Food Allergy and Intolerance Ink

Sainsbury’s, barley malt, cereals, gluten labelling: everybody’s confused

2012-01-17T11:47:00.006Z

Some confusion yesterday morning (16th January 2012) on Twitter from Sainsbury’s account concerning gluten levels in foods, which follows neatly on from my post of two weeks ago which has been so widely read and commented on (thank you all who have read, commented or emailed).

It began with Si asking Sainsbury’s about the paragraph on breakfast cereals on the first page of their brand new Product Guidance for People Avoiding GLUTEN (their caps – yes a bit scary, but I’ll press on as I’m made of stern stuff). I’ll paste it here in full:

The own-brand breakfast cereals listed are suitable for a gluten-free diet even though they contain barley malt extract and the allergy advice box states “contains gluten”. This is because they have been tested for gluten and only contain a very small amount of gluten (from the barley malt extract) which is at a level that most coeliacs can tolerate.

Si enquired whether this looked ‘odd’. Sainsbury’s offered their assistance quickly, and Si asked what that ‘very small amount of gluten’ might be. This was John from Sainsbury’s two-tweet response (combined and micro-edited for clarity):

Our own brand cereals are less than 10ppm, however due to legal changes we can't label products as gluten free if they contain any amount of gluten, items must be completely free before labeling.

We all know this is not the case. Items must be <20ppm, and not the immeasurable and probably unachievable ‘completely free’. Because I had tons of work to do I stuck my fat Italian nose in at this point and asked why a product could not be labelled gluten free if testing <10ppm. Chris from Sainsbury’s this time:

The legislation changed last year meaning we're no longer allowed the logo if the product has any traces of gluten.

He was presumably referring to the Crossed Grain logo and this is wrong again. You’re allowed the logo if a product has traces up to 20ppm (and you pay for the logo…). And the legislation changed several years ago – and became effective this year.

Still not giving much attention to the barley malt issue, I tweeted back, and was briskly directed to the Coeliac/Gluten-free labelling page on the Sainsbury’s site, which I’m not convinced the Sainsbury’s tweeters had themselves read. Later, Chris appeared to have done so, and said sorry for the confusion, and corrected himself, although I didn’t feel 100% reassured.

Perhaps wrongly, I’m less interested in mistaken customer service Tweeters than I am in the paragraph in the guidance document which Si thought odd, and which I thought odd too.

This is what I think the explanation is, from what I can gather. Barley malt extract is not gluten free and so must be declared on labels. If a product using barley malt extract has an allergy box, barley may be declared there too – which, we must remember, is also for the benefit of those with allergies, ie barley allergy, and not just coeliacs. But, because barley malt extract is so low in gluten and because so little of it is used in cereals, such products are often found to pass the <20ppm test – and therefore are safe for those on a GF diet, even if the manufacturer chooses not to label it gluten free and add claims about suitability.

Do I still think the paragraph odd? I think perhaps that ‘most’ in the last line should be removed (according to legislation, ‘suitable for coeliacs’ accompanies a <20ppm, ‘suitable for most coeliacs’ accompanies a 20-100ppm – as we’re talking <10ppm it could be argued it should be the former), but I think it would be better to make clear somehow that barley malt extract in cereals is just one of those exceptional cases – as evidenced by its specially devoted page in the Coeliac UK Food and Drink Directory.

So, problem solved? Sort of. Consider the following consequence of the labelling laws, which appears to fly in the face of common sense and logic:

A cereal with barley malt extract containing, as we’ve been told, <10ppm cannot be labelled ‘gluten free’ and can bear a label reading ‘contains gluten’.

And yet a theoretical cake containing, say, 15ppm, and therefore of a greater concentration of gluten than the cereal above, and also likely to be consumed in greater quantity per serving by weight, can be labelled ‘gluten free’ and will of course bear no such label.

Seems bonkers, doesn’t it.

As I don’t believe it to be compulsory, I genuinely can’t imagine why the ‘contains gluten’ warning has been included on the cereal, and I’m not at this point suggesting Sainsbury’s are mistaken in doing so, but all this does illustrate the imperfection of allergen labelling laws and the fiendish difficulty (impossibility?) of implementing a system which is both clear and flawless.

The maddening consequence of it all is that it casts doubt in our minds - even though we probably know more than we think. Yet just when we think we’ve understood labelling’s works, another spanner gets thrown in. We’re suddenly uncertain whether we get the rules at all, and we’re left with a paralysis of crushed confidence. Can I eat that? What does that mean? I’m not even confident what I’ve written above is correct, but that’s not the worst of it: the worst of it is that later today, when I’ve moved on to something else, I’ll have forgotten some of it again, and when someone asks me about something else I can’t immediately answer – what about ‘may contain’? what about ‘made in a factory…’? – I’ll be struggling to rebuild it all and rationalise it in my head and I’ll probably come to the conclusion that no, I don’t bloody understand it at all.

NB. Edited on 19th January 2012 to correct a statement made about the illegality of making a gluten-free claim on a product including a gluten-containing ingredient. This is not true, providing the product can meet sub 20ppm gluten thresholds. Coeliac UK's post below (comment 10) made this point, and I'm happy to put the record straight.

Welcome to 2012 and 20ppm: defending the new coeliac standard for gluten free

2012-01-04T14:49:00.003Z

You’ll be aware that new Codex standards concerning the labelling of gluten-free and low-gluten foods came into force on the 1st January – although in practice most manufacturers have been compliant for some time. In a nutshell, food products containing and testing at no more than 20ppm gluten (20 parts per million) can be labelled ‘gluten free’ – and those falling between 20 and 100 as ‘very low gluten’. Untested products without ‘gluten-containing ingredients’ can state as much – but no more.

Why 20ppm? I don’t have the scientific nous to dissect the studies and crunch the statistics in this post, and if I tried to it would probably induce a breakdown. But from what I can see from this study, which summarises (on page 6) findings of the few other studies in this field, there is evidence to suggest that up to 10mg of gluten a day is safe for the majority of coeliacs (but not all coeliacs – and I will come back to this later). This appears to be agreed upon by a consensus of the world’s top coeliac experts such as Alessio Fasano, whose open letter on the matter seems reasonable and well thought-out.

In order to take in 10mg daily, you would need to consume 500g of food at 20ppm every day. This is unlikely, but possible, and the Center for Celiac Research showed here how that might break down.

There is an important point to make here, though: in practice, foods’ gluten content will fall lower than 20ppm, some considerably so. This is because testing at these ultra low levels carries a margin of error, and in order to ensure a sub 20ppm result, manufacturers must in practice aim for quite a bit lower. Gluten free food often tests at 6-8ppm, thus making it unlikely you’d consume 10mg a day in this way.

Online, there’s been quite a bit of dissent about the new legislation.

Some are arguing that gluten free should mean zero gluten. We don’t have the technology to measure to 0ppm, so foods cannot be tested and confirmed to have zero gluten. Nevertheless, I’ve seen arguments put forward that only naturally gluten-free food should carry gluten-free (ie zero gluten) labelling. But that’s unworkable and seems perverse: we can’t test for it, therefore we can’t guarantee it, and it is effectively arguing against any form of testing for gluten-free food.

Wise coeliacs know – and need to know – that fruit, veg, meat, fish, dairy products, nuts and seeds are gluten free. Do you think they should be uniquely labelled as such? Would you also propose putting a nut-free label on a grapefruit or a milk-free label on a fillet of salmon? Zero-risk guarantees are impossible in the context of everyday living: an apple sitting on a shelf may carry a few microscopic particles of flour if there’s baking going on in another part of the supermarket. On the molecular level, this trace contamination is impossible to avoid.

The compromise is to have ‘gluten free’ mean ‘no detectable gluten’ – which stands at, I think, 3-5ppm according to the best detection methods. This is what Australia and New Zealand have at present – although the Australian Coeliac Society is asking to be brought in line with Europe.

The argument against this is that the threshold is needlessly strict, and difficult for many manufacturers to achieve. Just because we can measure this level – doesn’t mean our cut off point should be at this level, as Fasano argues. Manufacturers will be put off entering the gluten-free market, and as most coeliacs will tell you, they want more options, not fewer. It will probably also lead to more product recalls, not to mention increased prices and poorer quality products.

Passion vs dispassion
This is an emotional issue. Many have suffered years of non- or misdiagnosis, not to mention relapses and painful glutening episodes. Friends and family may not have always been understanding and sympathetic. There are relentless social difficulties in managing a gluten-free lifestyle. It’s bloody hard and every coeliac knows it.

But when it comes to matters of health and science, emotion cannot be allowed to dominate decision-making processes. It must be dispassionate.

As understandable as it is, a lot of the reaction against 20ppm I’ve seen has been emotional.

“I want no gluten. Coeliacs need no gluten.” Setting aside the fact that we can’t measure no gluten, specialists know that all coeliacs have a threshold and can tolerate a minute amount of gluten, which varies from person to person. As any toxicologist will tell you, it is a question of dose. Not only is zero gluten not a feasible practical option – to the best of our knowledge, it is not necessary, and disputing that is an emotional not scientific response.

“Gluten free should mean gluten free.” I think this too is an emotional argument. There is a precedent for ‘free’ to mean ‘almost but not quite free’ – alcohol-free lager can contain 0.05% alcohol, eg, and I understand it is a similar situation with cholesterol free, sugar free, calorie free, decaffeinated products and others.

To those against 20ppm, I would pose this: for whose benefit are you arguing for? It’s a sincere and genuine question. Your own benefit? The benefit of all coeliacs? The benefit of 95% of coeliacs? Which is it?

This is a very important question which anyone who disagrees with 20ppm ought to be clear about. Because, as has been pointed out, lowering the threshold will cause problems (limiting product availability, raising prices etc) which will hit many coeliacs quite hard, and may increase non-compliance with the GF diet among large sections of the coeliac population.

It’s a tough, harsh fact of life that we can’t please everyone, everytime. I was at a talk at Leatherhead recently on food allergens (the write-up is on the FoodsMatter.com site) at which the Food Standards Agency’s Dr Chun-Han Chan pointed out that thresholds for other allergens (nuts and peanuts, perhaps most importantly, but others too) were being developed. None of these will be zero. As Dr Chan said, the aim is not to protect every individual on every occasion against any possible reaction, but to manage overall public health as best possible. ‘Free from’ will translate to ‘no mild reaction in the vast majority of individuals’ – vast majority being 95-99% of people.

Tough decisions have to be made in order to move forward in healthcare – for instance, on the value and cost of certain drugs in relation to NHS budgets and the economy. We simply cannot do everything, for everybody, in every conceivable situation. Therefore, decisions must be made to benefit the most people – and on that apparent basis 20ppm has been agreed upon.

The ultra sensitive
Upstream I said I’d come back to the issue of acute sensitivity to gluten. The first thing I’d say is that unless confirmed by your gastro, I’d urge ultra-sensitive coeliacs to be open to the possibility that they could be reacting to another ingredient or substance, if only because it’s impossible to know the precise level of gluten in any food. I don’t know of any coeliacs who have a scientifically tested numerical value on their threshold, and while coeliacs doubtlessly understand their bodies very well indeed, there remain other possibilities (such as sugars in wheat starch, other intolerances, IBS) which I examined a little in my book and which could potentially mimic glutening symptoms.

The second thing is that, if you are or feel you are acutely sensitive to gluten at extremely trace levels, then it must be bloody tough and I can’t imagine the difficulties of it at all. I’m aware it seems heartless of any pro-20ppm’ers to be supporting this figure if you literally and metaphorically cannot stomach it – but I hope that you’ll understand from what I’ve said above why it seems this level has been set.

I expect it will feel a harsh decision to some, hence the emotion: ‘But what about me?’ Yet the further tough reality is that if we indulged in endless ‘whataboutery’, then we’d end up with no labelling regulations at all – and that would put us back to the sixties and seventies. For instance, what about people with mushroom or kiwi or strawberry allergy, for whom an allergy alert box is useless and whose allergy is not covered in the alerts the allergy charities send out? What about people with other dietary needs? Those with PKU, or favism, or gout? Or who avoid certain foods due to religious reasons?

As the experts acknowledge, we could do with more studies to better understand the picture of safe gluten thresholds. But there are ethical concerns here. Let’s face it, would you be happy to submit to gluten micro-challenges every day? That’s what science needs to get that clearer picture, and giving coeliacs measured quantities of gluten isn’t without its obvious problems.

If only in the interests of balance, there is what seems to be a very well thought-out and dispassionate counter-argument which you may like to read. I’ve briefly looked at it and not yet unpicked it, but I hope to find the time to do so in the future, and I may repost when I’ve done so, and taken on board any comments that follow here. It’s on the Ultimate Gluten Free site here.

In summary…
Perhaps ultimately it just comes down to who you trust, and I guess I trust the scientists and the coeliac bodies.

Here’s a concern. I fear for newly or recently diagnosed coeliacs. I’m worried that all the impassioned and occasionally alarmist talk on Twitter and blogs and forums about the need to eliminate every last trace of gluten and recommendations to avoid wheat-based glucose syrup and other gluten-free ingredients and the dangers of Codex is merely confusing already struggling new coeliacs, and potentially restricting their diets to detrimental levels. They are the most vulnerable.

It seems to me – and I admit this is just my own experience – that the loudest voices in this debate appear to be well-informed and often highly gluten-sensitive coeliacs who largely cook for themselves from scratch, maintain a high degree of health, and don’t rely much, if at all, on rendered gluten-free ‘free from’ foods.

I’d like to hear from others, from those for whom these foods represent a literal lifeline – including parents of coeliac children. Sometimes coeliacs write to me directly as they’re too shy or nervous of posting a comment publically on this or another blog: some are wary of challenging fundamentalist views and no longer know what to believe. We need to bear this in mind: not everyone is using their voice, and some of the stuff out there in webland (an alarmist video which I refuse to link to springs to mind) cannot, I’m sure, be helping the people who most need sane and evidence-based advice.

The best allergy-related food labelling there is in the world is for gluten. It beats nut, peanut, milk, egg and fish (which, remember, can kill) hands down. It’s remarkable we’ve got this far in a relatively short period – be aware that African and Asian countries don’t have anything that comes close – and it’s worth remembering too that the way we do it is not set in stone: if evidence is found to support a need for a lower gluten-free threshold, it will surely be considered.

You may not agree with it, but at the very least, a move from 200ppm to 20ppm is an enormous step in the right direction. That, at a minimum, cannot be denied.

Spicy Mesquite Chrimbo Chocookies

2011-12-18T12:15:00.000Z

I have been in possession of a small packet of mesquite flour since the Allergy and Gluten Free Show in May, when Joe Prest of the Pure Mesquite Company stopped by at the Foods Matter stand, at which I was working alongside its founder Michelle, and dropped off some display samples. I pocketed one of them faster than you can say “It’s the dried and ground bean pod of a leguminous plant which grows throughout much of Latin America and it’s gluten free” – and have been waiting for someone to kick me up the proverbial to do something culinary with it ever since.

The woman whose boot has metaphorically taken a swing at the HealthJourno lazyarse is called Caleigh and she writes an honest, oftentimes amusing and alltimes beautifully written blog called Gluten Free(k), about living not only with coeliac disease, but with Crohn’s too. It was her sweet idea to bring together a squad of GF bloggers to share seasonal reviews and ‘free from and festive’ recipes in a sort of collective online '12 Days of Christmas' gluten-free extravaganza, all in the run-up to the 25th. (If you’re only hearing of this now, then find a link at the foot of this blog to link-throughs to previous – and forthcoming – posts.)

Cookies was my allocated category and Google didn’t waste time in leading me to this recipe from Go Free Foods’ lovely Charlotte Pike – whose chocolate and almond brownies took home the 2011 Scones, Sweet Tarts and Brownies title in the Free From Food Awards – from her Hello Magazine ‘Free From’ Kitchen blog.

In my second confessed act of theft on this blog, I shamelessly stole her recipe and made a few seasonal adaptations…

Ingredients
* 200g butter
* 300g caster sugar
* 1 egg
* 50g cocoa powder
* 50g mesquite flour
* 180g plain GF flour
* Whatever falls out of the Schwartz jar of cinnamon that’s been sitting in your larder since 2008-abouts, waiting for this moment to shine.
* Nutmeg? Best before March 2010? That’ll do nicely.
* Is that an old jar of Schwartz ginger as well? Yes, bung some of that in.
* Some white chocolate (maybe)
* Some icing sugar (deffo)

If you compare mine with the original, you’ll see from the ingredients that I wanted to make it more mesquitey (that’s a real word) and more spicy. The mesquite flour taste is described as a blend of ‘chocolate, coconut, mocha and cinnamon’ and, as unlikely a combination as that may seem, it’s faithful of the aroma; I also think it’s slightly smoky too. It sort of catches you in the back of the throat a bit, but not in a bad way. I wanted more of that.

So, following Charlotte’s instructions, I creamed together the butter and sugar, and then beat in the egg. In went the cocoa and mesquite, and then it was time for proper Christmasification (that’s a real word). Some cinnamon fell in, as did a few sneezy shakes of ginger, and then I grated half an old nutmeg, still fragrant. Finally, the flour – Doves Farm GF – blending all the way.

(Let the records state that I did all this by hand. Where Charlotte’s "trusty Kitchen Aid struggled", my four-decades-old arm almost disembodied itself in protest.)

I dolloped small balls of the resultant mixture onto greaseproof paper-lined baking sheets, leaving good space between them to flatten as they cooked, and into a preheated 200°C oven they went, for eight to ten minutes. Smoky chocolate spiciness filled the flat. They emerged so:

I wanted to ‘dress’ some of them. The idea was to melt some white chocolate and drizzle it over the chocookies (yes, that’s a real word), and this was meant to represent settled snow. (I take my work seriously.) But as I melted the chocolate it took on a more custard yellowy appearance, and at some stage a spoon I used for the cocoa got involved in the stirring proceedings and contaminated the ‘snow’, further denting its ambitions towards whiteness. Sludgy snow, then - salvaged somewhat by dusting a smattering of icing sugar atop. Naturally, this represented freshly falling snow. (Like I said - seriously.) Here are some of the better examples:

On reflection, the experimental economy bauble was a decorative error:

They were delicious: chewy, chocolatey, smoky, rich, cocoay (that's a real word!). Charlotte takes total credit. Next time – the second time in my life I make cookies – I’ll put more spice in: it was there all right, but I wanted it to be really steeped with ginger and nutmeg, and the cinnamon predominated. Some orange – perhaps chopped peel or grated zest – might’ve been delicious.

Thanks to Caleigh (can we do this for Easter too?) for arranging this, and for inviting me - a GFer by honorary name but not by nature - to be a part of it, and please check out the great work of all other gluten-free bloggers here.

Merry Christmas, folks.

Sainsbury’s gluten free oats / recall: an update

2011-11-09T13:03:00.002Z

A coeliac consumer (CC) contacted me last week with a problem. CC had been eating Sainbury’s GF oats for about a year, and had been experiencing some symptoms. While CC knew, thanks to the product recall of September, that the effected batches carried a best before date of July, August and September 2012, CC did not know when these batches may have been actually on the shelves. With no packets left to examine but remembering when they were purchased, CC is unsure whether he or she may have consumed the affected batches, and whether these may have contributed to symptoms.

My first port of call was the FSA – the number given on the allergy advice notice. They explained that they didn’t hold this information, and advised I try the Sainsbury’s Customer Helpline (0800 636 262). This I did and spoke to a very helpful assistant called Evelyn who knew immediately what I was talking about and seemed very familiar with gluten-free issues. Ultimately, though, she couldn’t find out the information either, for certain, and gave me Sainsbury’s head office number, based in London.

There I spoke to Rhona, who was also familiar with the issue. She had to refer to colleagues in another department, but within five or so minutes established that the oats had been on the shelf in July, August and September of this year, and were taken off in early September, when the contamination issue became known.

The good news, as Rhona told me, is that Sainsbury’s GF oats which have been certified safe are slowly beginning to reappear back on the shelves, and she offered to find out whether my local branch had them in store yet. So, I presume, you can call Sainsbury’s and find out whether yours has them in stock.

Although she couldn’t tell me the level of contamination, she added that it “very, very small amount”, and that the issues and causes had been identified and now resolved.

I haven’t contacted other affected companies which I wrote about six or so weeks ago, but would imagine that we will be shortly seeing the availability of GF oats returning over the coming month, given the same supplier was involved in all cases.

I found this issue interesting, as I’d not properly considered before the possibility that a food sensitive person may consume a problem product and not be able to easily find out retrospectively whether he or she may have done so. It brings up issues of whether it may be sensible to buy in bulk, ‘stock up’ on foods with a long-shelf live, and avoid consuming recently bought foods in case a contamination issue comes up in the subsequent months or weeks. Or, indeed, whether it’s wise to hold on to packaging of some foods we consume – batch codes and BBE dates, for example, to refer to should we need them.

Please add a comment if you have new information about other brands, GF oats’ appearance back on the shelves, or thoughts about the issues.

Gluten free cosmetics and toiletries: an ongoing issue

2011-11-07T16:37:00.004Z

I have, at last, finished my article on gluten-free skincare products for SkinsMatter.com – please do go read it on the site here, if you can, before you read this post.

It’s taken me most of the year to put this one to bed – and poor Michelle, editor of FoodsMatter.com and all other sites in the Matter family, including ‘Skins’, has been more than patient. I’m sure some of you will have seen previous requests for information, sources, contacts and so on, perhaps through my Twitter feed – and I’d like to extend thanks to all of you who’ve gotten in touch with tips.

It was a tough piece to write. There were times when I couldn’t quite face the difficulties of the research, or get my head around the various degrees of opinion coeliac experts and commentators and sufferers were expressing. No two people shared an identical view, and there was not much science to rely on. I did a lot of Googling, and online reading, and the depth of confusion on the subject – even among those under the impression they knew what they were talking about – seemed substantial.

In the absence of definitive evidence, I learned, most careful and aware coeliacs seem to play completely safe. And who can blame them? But from what we know, and as the article states, it seems unlikely that gluten can cross the skin barrier: it’s just too big a molecule. (Although that doesn’t mean it’s not a problem, either elsewhere, or in other ways… )

It’s easy to jump to the conclusion, if you know you react to gluten, of it being the probable culprit of any reaction. But just like when you experience diarrhoea or tummy troubles it may not necessarily mean you’ve been glutened – we all, coeliacs and non-coeliacs alike, experience those symptoms from time to time, and there can be lots of reasons for them – similarly, if you experience a reaction to a skincare product, which again we’re all prone to occasionally, it may not be gluten. As individuals, there’s just no way of knowing for sure.

(I know, I know – coeliacs often tell me that the tell tale signs of a glutening are so distinct and specific that they’re unmistakeable with anything else, and I don’t doubt this is often the case. But as I covered in my book, Coeliac Disease: what you need to know, there can be other reasons for glutening-like symptoms, and I do consider it important to be open minded about them because that fear of being glutened that coeliacs carry with them, day in, day out, is such an unpleasant burden, that other possibilities should always be pursued.)

Not everyone will agree with the view that you can’t know, or with everything in the article, I guess, and I’d really very much welcome your thoughts here or on the FoodsMatter.com Forum where I’ve posted on this subject.

There is definitely some way to go, but that the German Coeliac Society is looking at gluten-free skincare is surely a positive sign for coeliacs. Personally, I’m interested in exploring more deeply how wheat and oat-based cosmetics ingredients are processed and used, and hope to come back to this one day. The whole issue of labelling is incredibly complex, and this is something I’ll return to too – perhaps when I’ve recovered from writing this piece!

Finally, if you do know of entirely (and I do mean 100% – ie every product) gluten-free skincare companies which fall within our remit on the site, please do let me know. I was a little surprised, despite lots of mailshots, callouts and publicity, that so few companies got back to me about their GF status. You can see the list on the article itself, and we do hope to add to it in future, but it does seem perhaps this remains a very niche area of awareness. It’ll be interesting to see how it grows and develops.

Gluten-free Skincare on the SkinsMatter.com site and CoeliacsMatter.com site.

Who’s sorry about coeliac errors? Anybody?

2011-10-19T23:22:00.003+01:00

A lot of papers were wrong in the summer about the cost of coeliac bread prescriptions. £32.27 A LOAF, said the Sun, under the banner ‘Prescription Scandal’. Similar stories appeared in the Telegraph, the Mirror and the Mail. All these appear to have been taken down from the papers’ sites. You can read all about it, and see the Sun spread, on media journalist Roy Greenslade’s blog – though many of the links no longer work.

Only Wales Online, still seem to be live with the story, as far as I can see (this link may not work soon, though).

The Express corrected their piece the following day.

The Sun took two months, as the Sun – Tabloid Lies blog pointed out.

The Daily Mail issued a correction yesterday, mid-October. It’s a correction, it must really be emphasised, and not an apology, as this post on the Coeliac Chat Board suggests.

We appear to still be waiting for the Mirror and Telegraph.

(If you’re interested in the source of the story, and the mistake which led to it, I can recommend this Tabloid Watch blog post.)

We’ve also waited six months for the BBC to rule on complaints made to them from viewers (or ‘viewer’ – singular – as they have it for some inexplicable reason) of Saturday Kitchen regarding remarks made by guest chef Anthony Demetre, which I blogged about earlier in the year here and then here.

The complaint was upheld – and there have been a lot of expressions of (small) victory from coeliacs online, and rightly so, although many remain dissatisifed, such as the GF Guerrillas, and I don’t blame them.

As far as I am aware, the BBC hasn’t apologised, and neither has Saturday Kitchen / the production company behind the show.

The only apology, unless I’m mistaken, is from Anthony Demetre himself, issued through his agent, in April.

He says: “I apologise for causing any offence, and for being perceived as handing out bad advice, or for allegedly underplaying the seriousness of this condition.”

Allegedly? For ‘being perceived’? At the time I was unsatisfied with the wording, but in retrospect, in light of the fact that nobody else is saying sorry to the coeliac community for getting things wrong, perhaps we should be grateful for that small gesture – and let’s hope for more to come…

Coeliac stories wanted – in exchange for prizes, or fame…

2011-10-04T23:01:00.003+01:00

There appear to be a few requests for personal accounts of coeliac disease doing the rounds at the moment, so I thought it may be handy to do a quick round-up of the ones I’ve come across. Please let me know if you know of others.

Coeliac UK
The national charity for CD and dermatitis herpetiformis is looking for “positive and inspirational stories on how you have adapted to living with coeliac disease and/or DH for those special occasions. Whether enjoying a custom made gluten-free birthday cake, or visiting an establishment that makes an extra effort to make that gluten-free birthday special we want to hear from you.”

Deadline is 21st October for this month’s competition, to win either a Glutafin or a Juvela gift box. Click here for details.

Genius Foods
The gluten-free bread company recently issued a couple of tweets reading:

“Have you recently started a gluten free diet or been gluten free all your life? We’d love to hear your story. We’ll publish each story on our Facebook page. Every month we’ll pick our favourite and they’ll receive goodie bag and will appear on our blog!”

Email your story to info@geniusglutenfree.com.

Gluten Free Ireland
The nice chaps at GF Ireland are giving away a copy of my new book, Coeliac Disease: What you need to know, in their prize draw giveaway this month. (More information about my book can be found on the dedicated page on this blog here.)

They say: “Tell us your stories of gluten free success and every month you'll be entered into a prize draw to win a lovely prize, delivered directly to your door.”

Click on the site here or to enter the story click here.

Foods You Can
Readers' stories are also being sought by food allergy and intolerance information website, Foods You Can. Founder Bunmi Sobowale offers Amazon vouchers each month to a reader. Click here.

Erm, me…
If they don’t appeal, or if you don’t fancy writing your own story, as a health journalist I’m always on the lookout for interesting coeliac-related stories to put forward to editors of health magazines and papers.

For further details, see the Coeliac Case Studies page.

Finally…
If you know of any others – let me know and I’ll update this page.

Gluten free oat product recall - and unaffected oat products

2011-09-21T17:37:00.016+01:00

There has been a flurry of activity towards the end of September with product recalls due to contamination of gluten-free oats. Here are links to the effected products:

* Some batches of Sainsbury's Free From Oats. (Link to FSA here.)

* Some date codes of Tesco's Free From Muesli and Porridge. (Link to FSA here.)

* Some batches of Asda Free From oat muesli and porridge oats. (Link to FSA here.)

* Some date codes of Delicious Alchemy Gluten Free Rolled Oats and Original Gluten Free Purely Oaty Fruity Nut Muesli. (Link to the site here.)

* Some date codes of Co-op Free From Gluten and Dairy Free muesli are affected. (See link to FSA here.)

Unaffected Products

I have spoken to Rebecca from Glebe Farm, who grow their own oats and she has confirmed that it is *not* Glebe Farm oats being supplied to the above producers or supermarkets - so Glebe Farm products are safe.

Nairn's have told me they do not use the supplier of the batch which has been contaminated, so Nairn's GF products are unaffected too.

SimplyFreeShop have tweeted that they have received confirmation that Juvela GF oats are okay.

Hale and Hearty are unaffected as well - I have just spoken to them. Their GF porridge oats remain safe.

Alara products are safe.

Thanks also to Alex from Alara for confirming that Morrisons GF oats are unaffected too.

Additional information

I've been informed by one of the affected companies that it is the same supplier responsible for all. Another contact has confirmed that the supplier of the contaminated oats is Swedish. According to regular poster Charlotte on the GF message board, the problem has arisen from a packaging problem in Holland.

I am keeping this post regularly updated as and when I learn more information. If you can help with further information, feel free to contact me through my personal website, or leave a comment. Thanks.

Post last updated 11.50 Wednesday 28th September 2011.

(PS. Guidelines and info on oats in the gluten free diet are available from Coeliac UK's website here.)

Gluten free-ers … and gluten free Fria!

2011-09-19T21:13:00.005+01:00

I was at an informal and friendly gathering of gluten-free bloggers last week, which you can read all about at the Eat Like a Horse blog, written and nicely photographed by journalist and coeliac Eleanor Jones. Sian (Gluten Free Mrs D), Irene and Fiona (the Guerrillas), Annie of Supper Club and I joined Monika of Close Up and Fria, and Jonas of Scandinavian Kitchen for chat, Estrella Damm beer and Swedish nibbles and drinks – including an amazingly jaw-bracing blueberry drink - and a tasting of the exceptional Fria gluten free bread.

The token wheatie was me, but the assembled party was all pretty interested (I shan’t say obsessed – although that probably does apply to me…) in matters glutenous and gluten-free-ous in one way or another. It’s always fascinating for me to listen in on conversations between coeliacs – I always learn something new – and it’s amazing how much benefit they seem to derive from sharing ideas, moans, tips and general banter. I’m always grateful when I’m allowed in!

One of the things coeliacs appear to miss most is pizza, and some seem to have problems finding a gluten-free pizza base they like. Monika gave us some Fria frozen pizza bases and asked us to experiment at home with them. As an Italian, brought up on my mother’s made-from-scratch pizza, I’m always a bit uncertain about ready made bases – let alone gluten-free ones – but I was glad to give them a go.

My family hails from Parma in northern Italy – home to Parmesan cheese and Parma ham, two of the nation’s most well known food products. But there’s a third product our region is highly regarded for in Italy, and these are the cep mushrooms (porcini) which grow wild in the woods, and are said to be among the best in the country.

Eat at a pizzeria in the region, and on the menu you’ll probably find a number of pizza options offering these delights as toppings. I decided to abandon Mozzarella and go the whole hog: a ham, cheese and mushroom pizza made with our region’s holy trinity.

So, a Swedish base, Italian toppings and…. British style. I think the British way of pizza has become to have quite a lot of topping – a bit like the British way of pasta has become to have quite a lot of sauce. This is a bit un-Italian, but I think it can suit gluten-free options because with such an approach the base plays a less important role – so it matters a lot less if it isn’t ‘quite the same’ to your tastebuds.

Bluntly, then, I loaded it on. As you can see.

The mushrooms my father gathered in the woods and my mother preserved by boiling in vinegar, then drying, and preserving in olive oil. I chopped a generous drained spoonful atop. Underneath, the tomato sauce was made using fresh plum tomatoes simmered with garlic and herbs and some tomato paste to thicken it as I was losing patience with its wateriness. A few slices of Parma Ham and Parmesan shavings added further Parma flavour.

Ten minutes in the oven and I had a tasty pizza. The base is really very good. It remained a bit doughy in the centre, but that was probably due to my topping overloading. I really liked the way it crisped up around the edges and went a little flaky, almost like an ungreasy filo pastry. After a few bites, it just seemed like any other pizza. It really is worth getting hold of – although it does contain wheat starch, which some coeliacs avoid.

You can order Fria and Scandinavian goodies from the Scandinavian Kitchen direct. (Other stockists can be found on my previous post on Fria here. )

I shall of course be popping back to the Scandinavian Kitchen to pick up some Plopps in due course…

Andy Murray and his food intolerance tests: gluten free, dairy free, not coeliac

2011-08-30T11:23:00.004+01:00

I’d heard a few mutterings that Andy Murray, like his friend and tennis rival Novak Djokovic, had been making adjustments to his diet – and now we have some confirmation.

In a press conference with the media ahead of the US Open, Murray was asked about his diet and gave some curious replies. (Scroll down to the last half dozen or so questions for the relevant bits.)

He says he is not intolerant to gluten (the popular name for the proteins triggering reactions in coeliac disease patients), but does have a problem with gliadin (found only in wheat, also associated, but not exclusively, with coeliac disease – fascinating and telling, in itself, that he’s heard of it), so seems to avoid all common gluten products. He has also eliminated cows’ milk, and there are suggestions of other adjustments too.

In trying to fathom what kind of food allergy or food intolerance testing Murray may have undergone, I find the most revealing quote this one:

“…I retest after the US Open, and then you get your results back again because it changes. Like when you cut stuff out, hopefully it’s gonna come on the green list again. So maybe after the US Open I can start reintroducing those foods back into my diet.”

I’m uncertain, but from this I would speculate he has undergone IgG food intolerance testing – a blood test which looks for raised IgG antibodies to various foods, and is based on the idea that these could be the cause or indicators of reactions.

While I was writing my first book, Living with Food Intolerance, in 2004, the IgG theory was a bit newer and more interesting. There had been a study in York which showed that it may have some relevance to those with IBS, and some experts I spoke with thought it was an interesting avenue of research. Since then, no real additional evidence has emerged, and in my experience the experts seem to have become considerably more sceptical – as have I.

Has Andy Murray undergone a test for which there is little supporting evidence? It seems so to me. He says he feels better. Should it all matter?

I came across another interview with Andy Murray, given a few weeks earlier.

He says:

“Well, I just did some blood tests for allergies and some blood tests for basically food intolerances. I think it’s something that most athletes should do. I’ve always eaten pretty well, but when you get the tests back you can be a lot more specific with what you eat and what you shouldn’t eat and you're putting the things in your body that you need.”

This seems a bit confused, and aspects of the previous interview also suggest, as he admits, that he doesn’t really understand it well – which makes me wonder about the kind of advice he is being given, especially as he also says he wasn’t experiencing any particular reactions. The tests don’t reveal foods ‘that you need’, for starters. Possibly more importantly: is he really in a position to advise what ‘most athletes should do’?

To be clear, I’m obviously glad he feels better. However, should he win the US Open, and even partly attribute that victory to his intolerance testing, I think it could be a potential cause for concern.

Because we’ve been there before. Two months ago I blogged about Novak Djokovic and his gluten free diet. Not a day has passed since that the post hasn’t received a number of hits via online searches – so people are still looking for information on this. A lot of what I said there is relevant here, I think – particularly all the reasons mentioned concerning health improvement after eliminating gluten and/or the junk food in which it is found. If a similar thing happens with Murray, it could generate a lot of publicity – much more than Djokovic – and once again I’m not sure how beneficial it would be to the public’s understanding of food sensitivities.

Diabetic chocolate is not gluten free bread

2011-08-24T17:12:00.002+01:00

I have just read what is in my view a fairly ignorant piece by Merryn Somerset Webb, editor in chief of Moneyweek. It’s here.

Her view, also expressed on Twitter, is that coeliacs should no more get gluten-free food on prescription than diabetics should get sugar-free chocolate.

I would have posted comments to the blog but the terms and conditions of the site are to me as obnoxious as the piece itself. (I would strongly urge you to avoid it too – as it seems you agree to any legal liabilities arising from your comment whilst ceding copyright in it.)

I don’t have time to get too angry today, or for a long post, but I will say this: to compare diabetes / sugar-free food with coeliacs / gluten-free food is absurd. First, diabetics don’t need to avoid sugar, and second, bread is a staple, while chocolate is not.

Research shows prescription foods help coeliacs stick to their strict diet – preventing ill health in the long run. This is just one reason why it is so important.

The writer calls ‘free from’ food ‘generally pretty disgusting’ – but I suspect she hasn’t tasted much lately, as the quality has risen remarkably in recent years – so much so that the industry now has its own awards.

Insulting to ‘free from’ producers, then, and apparent lack of sympathy towards coeliacs, to boot. Way to go.

Coeliac and GlutenFree Tweetup, 22nd August 2011 – a summary of points

2011-08-23T12:09:00.005+01:00

A hat-trick of coeliac and glutenfree tweetups now after the previous two and I think we’re getting into the swing of it now – although I do feel we perhaps had too many strands of conversation going on, too soon, and things got a little confused (this wasn’t helped by my losing connectivity for twenty minutes). More about this later.

We kicked off with a talk about ‘free from’ food prices, inspired by a comment Si Cornwell made prior to the tweetup. His point was that increased demand for gluten-free food teamed with more competition among manufacturers would drive high prices of ‘free from’ down. A fine theory: but is this really happening in the market in practice?

* Babir thought it wasn’t, and that we should take up the issue with our MPs
* Si responded that MPs don’t drive the retail market and were unlikely to offer subsidies outside the prescription system we have.
* Annie of Supperclub agreed it wasn’t happening either – and suggested that the new GF labelling rules in 2012 will deter people from entering the market – she suggested e-petition, lobbying…
* Babir thought the market would continue to grow as ‘free from’ manufacturers feel there’s still money to be made to continue ‘fleecing’ the coeliac community!
* Dale concurred, adding that ‘free from’ is a great cash cow – just like diet foods… People can still make money from the ‘free from’ community.
* GFGuerrillas thought retailers ‘have us coeliacs over a barrel’…
* Annie thought it was mainly the cost of maintaining specialist facilities keeping prices high.
* Caleigh (GlutenFreek) thought cost of raw materials may be higher than for non-GF and agreed with Annie about specialist facilities.
* MalSannie added that testing is expensive too.
* Liz, The CakeCrusader agreed with this.
* Si maintained that basic economics would win eventually – supply and demand – and with all the major supermarkets now entering the market is sure to drive prices down.

This kick-off conversation did set in motion other threads of chat, some of which I’ll include here:

* Antony thought that promoting GF food’s health benefits would drive the market up and the prices down…
* I asked whether there were any…
* Antony and Si both thought there was a widespread popular perception of health benefits to glutenfree, thanks to a few ‘stars’ / that people feel more ‘energetic’ going GF

* Holly (CoeliacSniffs) mentioned her struggles as a student funding the GF diet
* Saara, our CoeliacStudent, pointed out that a bag of GF pasta is ‘too expensive and far too small’
* GlutenFreek said packs may be half size and twice the price – if GF food parcels were as large as gluten-containing products she wouldn’t begrudge the cost so much.

* Lucy (Luluartist) pointed out that labelling was poorer in the US, but restaurants were excellent, and added that wheat is used to bulk food in the UK (which keeps gluten-containing food cheap?), whereas glutenfree corn is used in the US. She thought it was an unneecessary addition to so much food here.
* Si spoke of Canada’s top glutenfree awareness.

* Holly thought there was potential to get a VAT band reduction, like the 5% used on some medical items, and offered to explore this. There were lots of calls of support – and Annie offered to lend a hand. Holly promised to report back.

* GFguerrillas asked whether anyone asked for more selection at supermarkets directly?
* Louise (Musntgrumble) said she does – by logging requests, then by email and following up with a manager – but never gets any joy!
* Dale has too – but is unhappy with Asda/Tesco’s choice. Sainsbury’s much better, he feels.
* Annie said has been asking her Sainsbury’s branch to move GF bread away from fresh bread for four years – no joy there either.
* Si would like to see ‘free from’ in every aisle – not isolated in one spot
* Fria supported the call to ask for Fria in supermarkets – they’re working on boosting their distribution.

We returned to health later and there was a discussion that I think we probably ought to come back to, concerning the types of goods for those on a gluten free diet. Lots of chat regarding more calorific free from food – higher in sugar and fat. And calls for a campaign for healthier free from! Lots of support here for this, and I hope our honourable cake-producing members weren’t made to feel uncomfortable…

* CoeliacAntics made the point that they would like to see more savoury GF goods – “we don’t all have sweet teeth”.
* This was echoed by a few participants: that there’s too much interest in cakes/ muffins etc
* TheCakeCrusader pointed out that store-bought packaged goods filled with additives, and that specialist GF bakers use natural ingredients, and that their products should be enjoyed as a treat.
* MrsChicks later added that cake definitely has its place for people who’ve had to avoid it for so long.

Other business:

* Dale made an amusing point: why do crabsticks have wheat but no crab!?
* CoeliacStudent thought there should be more choice in GF veggie ready meals – and Jo D-M (SakuraBlythe) agreed.
* There were some calls for GF to mean 0ppm from MalSannie, John (GFLifeIreland) and Annie – and I think this is something we must come back to (I will on the blog too)
* Why is gluten added to Sainsbury’s ketchup, asked VJ!?
* There was a lot of loving for Leon Restaurants – I will get in touch with their press officer and try to find out more for next time.
* There was a good conversation about GF beer – that increasing availability should not be difficult in pubs – so why was it? Mr EdTheHorse said he drank Foster’s with no ill effects, but the group was quick to point out that damage can be silent and this wasn’t a risk worth taking.

Finally, Caroline’s news…

* A Free From Food Festival will take place on Southbank towards the end of November. She called for feedback, views, thoughts, ideas… Follow on Twitter here.

Now, there were a few remarks concerning how difficult it was at times to follow the various threads of conversation. I think it was Sian who said it was like a ‘noisy pub’. I agree, and I have found it very difficult to do this write up – although partly that was because I lost connectivity for the central part of the event.

Obviously, by the chats’ nature, we are going to go off on tangents, but did we do so too early? Were there too many strands? Should we more strictly stick to one specific question for at least the first part of the chat, and then let the ‘noisy pubness’ arise organically towards the end of the evening, as it inevitably will? Do comment below.

Apologies if I’ve missed an important point, misquoted, misspelled, gramatically blooped, missed a link, or missed a tweet directed at me – there were just too many, so email me though my website if you want my attention, or comment here if it concerns the points raised. Thanks if you took part; join us next time if you didn’t (early-mid October?).

Coeliac and Gluten Free Tweetup: Monday 22nd August

2011-08-10T23:35:00.003+01:00

Another date for your diaries, coeliacs and gluten-free'ers: Monday 22nd August 8-9pm GMT is the time and date for the next UK and Ireland coeliac and gluten free Twitter chat - or 'tweet up'.

The hashtag, like last two times, will be #gftweetup. (For those new to such twitter chats, you'll just need to include that hashtag with every message you post, and follow it - essentially by clicking on it, and then updating it - to see all messages posted and follow the stream. You'll pick it up.)

As before, I'll kick us off with a question on the night - but by all means DM me on Twitter or email me through my website if you want to put forward a 'starter for ten'...

Those of you on Facebook may want to spread the word there. Obviously, let's spread the word on Twitter too - and I'll issue reminders in the run-up.

I'll add any important updates to this thread over the coming weeks (eg in the event of Twitter overload on the night) and if you have any thoughts, please feel free to leave a comment.

Hope all of those who joined us last time or the time before can join again, and that some new faces show up too!

The Grumpy Guide to the Grumpy Guide to Food: let’s try to have a laugh about nut allergy and lactose intolerance

2011-08-04T14:36:00.007+01:00

Did you hear the one about the French coeliac? He could only count to seven because he was huit intolerant.

Groan. As feeble as you may think that joke is, hopefully it sort of demonstrates that I’m not someone who thinks some subjects must remain off-limits to humour, and therefore I don’t believe the topic of food sensitivities should be immune to gags... if you’ll pardon the pun.

So when I learned that the BBC’s Grumpy Guide to Food, which aired a few nights ago, had broached the subject, I tried to keep an open mind. Coeliacs Emma Pearson and Lee of the FreeFromG blog, had expressed some frustration on Twitter and warned me about some comments made. I felt annoyed, but let it pass before catching up on iPlayer.

The show featured a selection of averagely amusing celebrity rent-a-gobs sharing their occasionally diverting but ultimately unremarkable and unoriginal observations on matters gastronomic – all of which for me did little but reiterate the particularly poor state of food, food attitudes and food culture in this country.

Some of it I especially disliked. There was piss-taking of those who try to educate us about cooking. Obese people were targeted – coupled with those headless shots of them walking down the street, obviously minding their own business, but secretly hoping to have their wobbling midriffs filmed and paraded on TV for the nation’s entertainment. There was a joke about feeding lard to vegetarians – always hilarious, that. There was a general lack of appreciation of what makes good food good – perhaps best examplified by the segment on wine, in which the industry was panned, and which reminded me of issues I raised in a recent post of mine on the ‘no good or bad food’ lie.

Farmers’ markets produce was given a bashing: echoing its popular portrayal as overpriced just-as-good-as-supermarket fare, rather than higher quality produce worth paying a bit extra for, made by artisan producers and specialists who might just deserve our support, not least to try to divert some power from the all-conquering supermarkets. Is it only in our country that people who try to offer an alternative to the bland vegetables and over-salted ready meals of the major stores are sneered at in this way?

And so the food allergy and intolerance bits. “I’m intolerant of people who are intolerant,” declared somebody called John Moloney, which set the tone perfectly for what was to follow.

“Bullshitters” said Neil Morrissey of people who suspected they have monosodium glutamate (MSG) intolerance, recounting an anecdote in which some people who claimed to be MSG sensitive were unknowningly given MSG-free food (to which they claimed to react) and later MSG-rich food (to which they did not react). Assuming the legitimacy of this ‘experiment’ (I’ve not looked into it), it strikes me that these people might have a psychological aversion to MSG – which is a problem in itself, and something I’ll address in a future post.

Ed Byrne reported a Chris Rock gag: “Do you think there’s anyone in Rwanda with a lactose intolerance?” The joke here, of course, is on food sensitivity being a Western affectation, a ‘luxury’ that possibly food-deprived people in developing nations can’t afford to entertain. Yet the mundane truth is that most Africans are lactose intolerant (dairy farming being mostly absent throughout the continent) and that food allergies are an increasing problem there, something I only appreciated when I came to write Living with Food Allergies for the African and Asian markets. The recent announcement that coeliac disease may kill 42,000 children, mostly in Africa and Asia, every year may convince the sceptics.

It’s only chubby white people who have food allergies, I think someone else said. In reality, they’re “fat and lazy and eat too much”, I think it was. I could barely be bothered to listen by now. There was a remark questioning how bread can possibly be harmful. We were told to get ourselves an “imaginary illness” – a food sensitivity, of course – like we once may have had a childhood imaginary friend.

Humour is difficult to dissect and analyse. I struggled to find comedy in all this because there was so little truth or accuracy underlying the gags, and the attempts at humour seemed staged, occasionally laboured, tired, and too often yawningly boring. Perhaps I’m having a sense of humour bypass, but I could see it as nothing more than a one-hour parade of ignorance, and a depressing sign of how far we’ve still got to go towards understanding.

View the show here until Sunday 7th August 2011. (Scroll forward to 50mins for the five-minute food intolerance/allergy segment.)

Fria gluten-free products for coeliacs: notes on availabilities

2011-07-25T16:39:00.003+01:00

During the GFTweetup of a few weeks ago, there was a bit of discussion about Fria products, which many of us first came across at the Allergy Show, and have since been trying to source (often unsuccessfully). In my comments, I promised to contact the press officer for Fria in the UK, enquire about the availability of products and report back on any information. Here goes.

In the UK, Fria is currently available to purchase online from GFFDirect.

It’s also available in a few stores, mainly around London:

* Totally Swedish, 32 Crawford Street, W1 (a new store is opening in Barnes soon)

* Scandinavian Kitchen, 61 Great Titchfield Street, W1

* John Lewis Foodhall - Oxford Street W1 and Bluewater, Kent

For our Irish readers, I’m afraid it’s still not yet available in Ireland. But Monika, Fria’s PR, added this: “But if you know of someone who can give us advice of good stores in Ireland that handle frozen products well, that would be really helpful!”

Irish coeliacs: feel free to comment here if you want to recommend potential stockists in Ireland for Fria GF food, and I will pass on to Monika.

You can also stay updated on Fria’s Facebook page, and learn more at their website.

Coeliac and Gluten Free Tweetup, 11th July 2011 - a summary of points

2011-07-11T22:10:00.004+01:00

Well I thought the first one went well and I thought the second one went well too, and we had some new faces, which are always welcome.

We kicked off with a discussion about terminology and its misuse – coeliac disease being described as a ‘gluten allergy’, for instance. Should we make a point of correcting this?

* Ruth from WhatAllergy thought yes, as there is a big difference between allergy, intolerance and coeliac.
* John of GFLifeIreland, Annie SupperClub, and Sian GlutenFreeMrsD all found it frustrating.
* Sian confessed to using the word ‘allergy’ to get point across when abroad – and BooCakes agreed it’s effective in UK too.
* Annie thought coeliac should always be explained in auto-immune context.
* There was some agreement that it was a little hypocritical to use ‘allergy’ and then tick off the media for getting it wrong.
* VJ made the point that the word ‘disease’ in coeliac disease was offputting to many, and John agreed he would prefer another expression – although he wouldn’t want to have to spend the time to explain autoimmunity.

What kind of effect might terminology confusion / lack of understanding be having in society?

* Annie thought word ‘allergy’ has been devalued, in a sense – widely taken to mean ‘I don’t like’ something.
* Mark (Crazysmudge) pointed out that allergy is only taken seriously these days when qualified by ‘peanut’.
* Annie added that ‘glutenfree’ could be going the same way towards misuse / abuse: using the example of media bigging up tennis player Novak Djokovic’s performance thanks to his gluten free diet.
* Ruth said too many people claim allergies then order an allergen-filled dessert … and Annie agreed this caused problems wrt chefs/waiters
* A wise point from John: “If you have to explain the condition, you shouldn’t be eating in the restaurant” (because there’s always a cross-contamination concern)

BooCakes asked whether the increase in interest in GF a good or bad thing?

* On balance, said John – good, though he has mixed feelings
* Annie: “Raises public profile, maybe leads to more options, but also muddies water…”
* There appeared a general conclusion that the mainstreaming of GF had ‘buoyed the market’ and made life easier in terms of food choice for all.

There was lots of talk of a future meet up….

* A central London park / picnic, said Sian?
* Lots of murmurings of agreement from many gftweetuppers at that…
* Caroline Sugargrain said there’s a BBQ going on in South London early September…
* A weekend towards end of August / early September?

Favourite GF foods proved a popular discussion… Here are some that were mentioned:

* The Cake Crusader’s lemon drizzle cake
* Dietary Specials Pizza, Ciabatta brown rolls and Cornish Slices
* Honeybuns Bakery caramel shortbread
* Salute pasta
* TruFree custard creams
* Debbi & Andrew's Harrogate sausages
* Tesco’s Chocolate Macaroons
* Hale and Hearty Chocolate Breakfast Cereal
* Baked to Taste Cheese and Onion Pasty
* Isabels Doughballs Free From Pizza Bases
* Daura / Estrella lager
* Mongozo Beer (a new one to many)

Other random business:

* Waitrose boosted GF sales from Djoko effect
* The Cake Crusader put out a shout for #sbs (small business Sunday) on Twitter, from TheoPaphitis, and recommended it for other GF small businesses.
* Sian recommended Pod outlets

I think that’s it, but apologies if I’ve missed something out. Feel free to comment if so – and to discuss next tweet up – and a future meet up!

Novak Djokovic: Wimbledon champion, gluten free, probably not a coeliac

2011-07-04T14:52:00.005+01:00

New men’s number one and Wimbledon champion Novak Djokovic has lost one match this year, in the French Open semi final, to Roger Federer. He has won his other fifty matches, including two grand slam finals. In April at the Serbia Open, still unbeaten for the season, he explained to the press that he had been gluten free since late 2010, a diet to which he attributed his extraordinary run of success, and for which he had a new health advisor to thank. A Reuters report of it quotes Djokovic thus: “His name is Igor Cetojevic, he is a nutritionist and he's done a great job in changing my diet after we established I am allergic to some food ingredients like gluten.”

That is just about the only informative quote from Djokovic about his diet I can find, and there are several important points to note about it.

1. There was no mention of coeliac disease.
2. ‘Allergy’ to gluten is not coeliac disease.
3. Nutritionists have many abilities, but the means to confidently diagnose coeliac disease is not one of them.
4. ‘Some food ingredients’ – clearly there have been other dietary changes made, as well as gluten.

Naturally, this news spread rapidly and there followed the usual articles speculating over the benefits of a gluten-free diet to health and weight loss and fitness. The first specific and official mention of coeliac disease I have been able to find came in this article in the Independent from mid May, which repeats the quote from the Reuters report, but appears to leap to the conclusion of a coeliac diagnosis without offering further supporting evidence.

Since then, there has been much conversation and speculation online, including on chat forums and on blogs and in a gluten-free manufacturer’s newsletter and this morning on Coeliac UK’s FB page. Twitter has seen a lot of action, and many coeliacs have understandably expressed excitement and pride. There was a sweet tweet from a mum of a coeliac boy who was delighted she could now point to such a positive sporting role model.

But let’s rewind a little. Who is nutritionist Igor Cetojevic? I Googled him and found him here. He appears to be an advocate of ‘Energetic Medicine’, and to hold practices which orthodox medics consider unsubstantiated, such as homeopathy, magnetotherapy and Bach flower remedies, in high regard.

Of more relevance to the issue at hand, he says he uses a system called SCIO – which stands for “Scientific Consciousness Interface Operations System”. The official SCIO website can tell you more about it. Sample extract from that site: “The SCIO is a universal electrophysiological biofeedback system. It coordinates a complex electro-modal, biofeedback program with computer software in order to gather bioenergetic information of a client’s subconscious.”

At this point my internal alarm system is ringing loudly. I found this interview on a Spanish site called Quantum Medicine which appears to confirm that Cetojevic uses the SCIO to help identify ‘stress factors such as allergens, toxins, pathogens, viruses, mental and emotional disturbances…’ and implies that this is what was used on Djokovic.

What evidence do we have that SCIO is a valid tool? I cannot find one reference to it on PubMed – the online database of all published medical studies – which indicates it has probably not undergone any rigorous testing. This is hardly surprising, as it appears to be founded on a system of thinking which sits outside the medical orthodoxy.

I have found some references to it on sceptical scientific sites, however. Dr Stephen Barrett’s Quackwatch demolishes it and other ‘electrodiagnostic’ devices here and here, while Dr Ben Goldacre’s Bad Science blogpost of three years ago on the subject may also be of interest if you wish to learn more.

Their conclusion, essentially, is that the system has no foundation in science.

Where does this leave us?
Getting answers from the internet alone is, I admit, an unsatisfactory means of bringing us towards the truth, but it doesn’t alter the fact that I have been unable to find any reports that Djokovic underwent an endoscopy to confirm coeliac disease, or that he undertook an exclusion and reintroduction diet, which might help diagnose a non-coeliac gluten intolerance. I hate to draw a conclusion from what I’ve read on some, let’s say, unusual internet sites, but until we learn more, and from the information out there, it seems logical to reason that Djokovic was diagnosed with an ‘allergy to gluten’ by an alternative practitioner who uses a system which is at best scientifically questionable.

That Djokovic attributes his success to his gluten free diet cannot be argued with, but improvement in health following gluten exclusion does not necessarily imply any form of gluten sensitivity, as I have explained previously on this blog. Although I am not for one second questioning his honesty, he could be making the common but mistaken assumption that it does. In fact, there could be many possibilities for health improvement following gluten removal:

* psychological benefit, one mentioned in this Wall Street Journal article;
* benefit due simply to an improvement in diet that often comes with the elimination of the junk food gluten is typically found in, rather than a removal of the gluten itself;
* benefit from ingredients other than gluten which have been removed from the diet as a consequence of gluten removal, for instance bread yeast;
* benefit from the weight loss which can occur (and which occurred in Djokovic’s case);
* benefit derived from the replacement foods (and their nutrients) introduced into the diet to compensate for the removed gluten-containing foods.

I do understand why coeliacs and gluten sensitives have leaped on this story and looked to pop Djokovic on a gluten-free pedestal as the most famous coeliac on the planet. And while I cannot be 100% certain given the lack of reliably sourced information, I suspect he is not a coeliac, and I am personally not confident in any diagnosis of ‘gluten allergy’ or other gluten sensitivity either.

There are lots of reasons to like Djokovic: he’s a magnificent champion and athlete, he is talented and great to watch on court, he’s personable and he’s really very funny – as his notorious tennis impersonations testify. But perhaps the ability – or not – of his intestines to properly handle wheat protein should not be one of them.

Good foods, bad foods, good diets, bad diets: time for a rethink?

2011-06-28T11:08:00.006+01:00

“There is no such thing as an unhealthy food, only an unhealthy diet.”

I read this recently on Twitter, but it’s a regularly repeated statement in matters health and nutrition. It’s a variation, of course, on the “there are no bad foods, only bad diets” line we often hear too, and by extension, the implication has to be that there are no good foods either – “no good or bad foods, only good or bad diets”.

In this post I’d like to contest this, because I think it is both wrong and potentially damaging – both for people with food sensitivities, and the wider consumer. I’ll argue the case against, and then I’d really like to hear your thoughts. Consider, first, the following:

“There are no good or bad songs, only good or bad albums.”

“There are no good or bad football players, only good or bad teams.”

These are obviously statements we would not accept. So why do we give credence to analagous statements made about food? Can you come with another example where the “There is no good or bad…” line is used, and where it holds true? Maybe you can, but I can’t.

My contention here is that there are bad or unhealthy foods, but that you can eat them and still have a good or healthy diet. I eat them. I like occasional fizzy drinks, for instance, which are (I think) not healthy. I also like bananas, which are (I think) healthy. My take is that there are good and bad foods and diets, and there are degrees in between.

If you disagree, then I guess you must conversely agree that apples aren’t a good food, that you’ve never been served a bad meal, that you’ve been mistaken whenever you’ve referred to a food as healthy, that junk food is a misnomer, and that a fillet of wild salmon is on some level equivalent to a bag of crisps. To say that there is no good food is basically to say that there is nothing remarkable about any food – which anyone who has wrapped their chops around a choice and ripe and carotene-rich mango will surely know is just silly.

What is a good food?
It’s not just about nutrition, of course: the health or ‘goodness’ value of a food certainly does not only come from its minerals and vitamins and omegas and amino acids and antioxidants. There’s pure enjoyment, there’s taste, there’s the psychological and emotional wellbing certain foods give us. There’s also the tradition and celebration associated with foods and meals, the nostalgia of a homemade meal made by your mum, the feeling of community you get from food, and sharing it. There can be lots of factors which contribute to a food or meal’s goodness or healthfulness. And there are lots of factors which contribute an opposite, to my mind: heavy in preservatives, luminescent with artificial colours, artificial sweeteners, high in trans-fats, high in the salt-sugar-fat trinity, rubbish taste, highly processed ...

The widespread acceptance of the ‘no good or bad food…’ notion saps my soul a bit. Where did it even come from? How did it become a part of our everyday food dialogue? Everywhere you look, you’ll find it. Go Google it. You should come across the NHS, the FSA, assorted food companies, nutritionists, dietitians – and the organisations which represent them – all claiming that there are no good or bad foods.

You’d perhaps expect it from certain food manufacturers such as confectioners – it could be argued it’s a convenient shield for them to deflect accusations that they produce rubbish – but I find it depressing when experts are involved. I respect nutrition experts hugely and rely on them for my work and I’m sure not all of them feel the same way. But food advisors who don’t believe good foods exist? Nutrition and diet gurus who don’t see the health in a homemade winter vegetable soup or perfectly ripe avocado? Does this not strike you as strange?

This dictum has been challenged before, of course, but I’ve found it difficult to find many dissenting voices. Dr Andrew Weil, in his very readable and food-positive book, Eating Well for Optimum Health, calls the ‘no good or bad food’ mantra “remarkably unhelpful”, and gives counter-examples of both good foods (soybeans) and bad foods (margarine). In her critique of our food and nutrition landscape, Bad Food Britain, investigative food writer Joanna Blythman lists ‘There is no such thing as bad foods, only bad diets’ as one of ‘Britain’s Top 10 Bad Food Beliefs’.

Why do I also think this is a problem? Well, if we accept this supposed level playing field of foods, why should anyone bother to put pressure on food manufacturers to improve individual foods – for instance, by lowering salt content? If all food is equal, how do we teach our children to be selective about what they put into their mouths? If all tomatoes are equivalent, what’s the point in growing your own when you can go buy those bland ones at the supermarket? Why bother baking your own homemade fruitcake when the boxed-up one with the 2012 best before date is just as neither-good-nor-bad? Are we to forget about food campaigns, awareness and education, grow-your-own initiatives and cooking entirely, then?

Good food for coeliacs and food sensitives
This blog’s target reader is people with food sensitivities. For years, many people with long-standing food restrictions have struggled to find replacement foods which are both palatable and nutritious. Can we really deny that the beany soya milks of old were in no way ‘worse’ than the tastier soya milks of present? And that their fortification with nutrients that may be missing from a food intolerant’s diet is not an improvement, of sorts? Do coeliacs, who may have damaged intestinal linings and need to be very careful about what they eat, not need to choose ‘good’ and ‘healthy’ foods in order to promote healing and replace the absent nutrition caused by malabsorption during their undiagnosed years?

If there are no good foods, then it’s the death knell to BBC Good Food Magazine and time to boycott the BBC Good Food Show for mis-selling itself to us. It’s time to decommission Masterchef and we may as well abandon all food awards, including the Free From Food Awards. Let’s not bother celebrating and championing food – let’s instead leave the question of food in the hands of people who don’t even believe good and healthy foods exist.

“No good or bad food…”, to me, feels thoughtless and careless. It fails us and it fails the next generation of food consumers, it’s an insult to our food culture and to our instinctive senses of taste, sight and smell. It is an ‘up yours’ to the one-woman ‘free from’ producer baking and selling homemade GF cakes from her kitchen, and is a middle-fingered salute to the small artisan producers and local growers who take care over their output and try to deliver it to the wider public at food fairs and farmers’ markets.

And that’s my case against. Now over to you!

Coeliac / gluten free tweetup - Monday 11th July

2011-06-21T18:31:00.002+01:00

Thanks, John of GFLifeIreland, for suggesting this...

Date for your diaries: Monday 11th July 8-9pm GMT is the time and date for the next UK and Ireland coeliac and gluten free Twitter chat - or 'tweet up'.

The hashtag, like last time, will be #gftweetup.

Last time I kicked us off with a question to start us off on the night, which I'm happy to do again, but if someone else wants to, or wants to suggest a topic, by all means DM me on Twitter or email me through my website.

Those of you on Facebook will I'm sure like to spread the word there. Obviously, let's spread the word on Twitter too - and I'll issue reminders in the run-up.

I'll add any important updates to this thread (eg in the event of Twitter overload on the night) and if you have any thoughts, please feel free to leave a comment.

Hope all of those who joined us last time can join again, and that some new faces show up too!

Congress of the European Academy of Allergy and Clinical Immunology: food allergy, food neophobia, new food allergy tests and allergy to GM foods

2011-06-17T16:33:00.004+01:00

The 30th Congress of the European Academy of Allergy and Clinical Immunology was held this week in Istanbul, and here is a round-up of the more interesting pieces of food allergy research to come out from it – covering EpiPens, new egg allergy testing (and perhaps dairy allergy testing), bringing up a new baby to avoid allergy, food neophobia and social limitations in children, and allergy to GM food and novel proteins.

EpiPens may not be saving enough lives
Over 100,000 adrenaline auto-injectors like EpiPens have been given to people with severe food allergy (food anaphylaxis) over the past 20 years, but the death rate has remained at around five per year. New research from Dr Richard Pumphrey of the Central Manchester Hospitals has revealed why.

Dr Pumphrey looked at the circumstances around each of the 110 deaths that have occurred since introduction of the pens. He found that two out of three of those dying had not been given EpiPens because their previous reactions had been so mild.

Of those who had been given pens, around half used the pen late or not at all because they were not carrying them at the time of the attack.

The other half had used the pens correctly but still died, and Dr Pumphrey suspects that in a large proportion of these cases, the needle, when injected into the thigh, did not reach the muscle, possibly due to the patient being overweight and having a layer of fat above the muscle – thus reducing the likelihood of the adrenaline reaching the muscle where it is most effective.

This problem should be tackled – either with injectors with longer needles, or better training in the use of pens to identify points on the thigh with little fat in those susceptible.

There should also be more emphasis on patients taking the pens with them when they go into situations where they could be at risk. “The peak age for deaths from food allergy is between 18 and 24, and the advice needs to be tailored to them – this age group has varying views on risk,” said Dr Pumphrey.

A new test for egg allergy – and dairy allergy?
Those with egg allergies have always been told to avoid all egg, but it seems that some egg allergics can tolerate cooked egg – and yet currently available, commercial tests cannot discriminate between these different forms of egg allergy.

A new test is currently being devised by a team lead by Professor Philippe Eigenmann of the University of Geneva.

“Instead of saying to patients ‘you are allergic to egg, so you need to restrict all forms of egg in your diet’, we might be able to tell them they are allergic to egg but can eat, for example, egg pasta or foods cooked with eggs; in daily life this really makes a difference,” he says.

If the outcome of trials in people with egg allergy are successful and it is clear that the test will be useful, it will be made more widely available. Indeed, Professor Eigenmann is currently in discussions with some large diagnostic companies, and future work may involve developing a similar test for dairy products.

Bringing up baby: mothers unaware how best to avoid allergy
Only 10% of first-time mothers are aware of the link between allergy and the way babies are fed in their first year, a new study has revealed.

Despite it being accepted that breastfeeding and delaying the introduction of solid foods until a child is four to six months can help, this message is not getting through effectively to new mums and many more allergic children could result.

The study was led by Dr Kirsi Laitinen and colleagues of University of Turku, Finland. Dr Laitinen questioned first-time mothers from Finland, England, Germany, Hungary and Spain in the weeks after they had given birth.

When asked a general question about whether how an infant is fed was likely to affect future health, almost all agreed that it was. But only around 10% agreed that how the baby is fed is likely to influence the possibility of developing a food allergy. Interestingly, when the question was asked in a different way, whether childhood diet was likely to be linked to conditions such as allergy, heart disease and diabetes, the level of awareness seemed higher. “50% of mothers thought that child’s diet was important or extremely important for determining a lifelong risk of food allergy,” said Dr Laitinen.

There are a number of reasons for the poor awareness, Dr Laitinen believes. “Mothers receive information about feeding their baby from health workers and leaflets. These should be updated and the health workers need to be made more aware of how important the feeding of the child for future health,” she said.

Food neophobia and social fear in children with food allergy
Even at a very young age, children with allergies are afraid to try new foods, and many do not go to parties, according to an international study. And the parents’ own fears can have a profound influence on children too.

Dr Audrey Dunn-Galvin from Cork University, Ireland, has been looking at the quality of life of parents, children, teenagers, and adults, living with food allergy.

Her Research Group brought together information from 250 questionnaires and interviews completed by children and adults worldwide. Topics included food anxiety, social and dietary restrictions, general emotional impact, food labelling and coping strategies. Her study was part of EuroPrevall.

A study in Italy found that over 75% of children (5-11years) claimed to have a monotonous diet and that they were significantly less interested in tasting new foods than younger children. Because of their allergies, 18% of children never attended parties.

74% of parents reported that they were concerned by poor food labelling and that their child was afraid to try new foods. Allergy generates social limitations too: there are few restaurants that families can safely go to. Children with allergy were generally more anxious than other children of the same age, and feel different from children who do not have allergies. This feeling increases, particularly in teenagers.

“A better understanding of children and young people’s views on the impact of a disease on their experiences and relationships will allow us, as health professionals, to respond more appropriately,” said Dr Dunn-Galvin.

Allergy fears from new foods
People who suffer from – or have a genetic predisposition to – allergies may face risks from GM foods and new varieties of fruit and vegetables, say experts.

“The development of genetically modified plants (GMPs) and foods derived from those plants is rapidly increasing worldwide,” said Dr Jean-Michel Wal from INRA, the French National Institute for Agricultural Research.

Most GMPs are currently grown to generate a characteristic in the plant such as insect resistance or herbicide tolerance. Inserting the transgene may produce unintended effects due to interactions with plant’s own genes.

The risk of new sensitisation in people with a genetic predisposition to allergy, as well as an allergic reaction in people who are already sensitised to certain allergens, must be evaluated before the new GMP is approved for human and animal consumption.

Professor Wal said, “This situation is completely new – we have no history of allergy to GM foods and the potential for allergy should be assessed case-by-case.” How digestible newly expressed proteins in the GMPs are, how they may interact with a person’s immune system and whether the potential for allergy has been enhanced must all be investigated

It is not just GM foods that could increase the risk of allergy. Proteins found in new varieties of fruit and vegetables, such as kiwi fruit, may cause mild, unpleasant symptoms to severe life-threatening reactions. Understanding the action of separate proteins could improve the quality of life for people who have to avoid certain foods.

Coeliac and Gluten Free Tweetup, 2nd June 2011 - a summary of points

2011-06-03T10:33:00.005+01:00

Well I thought it went pretty well – and others appeared to enjoy it too. Around 30 or so coeliac and gluten-free tweeters – and a few stray ‘wheaties’ like myself – joined in for an hour of 140-character chat. This is quick and rough as I’m up to my neck, but here is a quick summary:

We kicked off talking about the recent coeliac awareness week, the gluten free challenge in May, and the coverage of both in the media.

* Ruth at WhatAllergy thought there was good coverage – but pointed out that it’s only a week and then it all *stops* for another year;
* Annie of Supper Club fame thought there was more mainstream coverage this year, but that a more ‘national presence’ to the challenge would have been good – as would some supermarket involvement;
* Dale (Manawydan) suggested supermarket involvement may be difficult to secure, as it’s tough enough getting them to stock a decent selection of GF – vegetarians are better catered for, he pointed out – and later added that we need to be more vocal about the need for more selection in supermarkets;
* Foodamentalists said it can be ‘talking to a brick wall’ when approaching supermarkets…;
* Tatooinechick wanted more recognised brands stocked. She said Asda are now doing own-brand GF – but she wanted to see more Doves Farm available;
* Annie would’ve liked to see a TV cookery show to coincide with coeliac awareness week;
* Nicola, as a dietitian, pointed out the value of doing the gluten free challenge for those with coeliac patients – ‘a great insight’ she called it.
* Musntgrumble made the point that we should all ask about GF, wherever we are. It all helps to raise awareness.

The issue of cookery demos was raised, and this is a topic we can perhaps revisit next time:

* Foodamentalists expressed an interest in this.
* Annie mooted the idea of a ‘roadshow’
* Charlotte at GoFreeCakes said she does a number of demos around the country
* Caroline at Sugargrain would like to do some in London – and has some plans she will let us know about soon.

There were assorted tips and points:

* Leon Restaurants – recommended in London
* Bruschetta – Kingston gluten free restaurant, also recommended
* Here is a useful Facebook gluten free chip shop page;
* The CUK AGM was mentioned – look up Foodamentalists if you’re going!
* Annie mooted a gluten free takeaway night…
* GFDoctor warned a little cryptically about agave… In the dark about this one, but may look into it. Perhaps Michelle at Foods Matter may know a little more?

Overall, most posters seemed keen for another one, and I suggested perhaps July or August. Hopefully, there were other ‘lurkers’ who followed the stream and will join in next time. Happy to hear your thoughts on future topics, timings, dates, how to spread the word etc etc. Sorry if I missed out any really good tips or observations last night. Feel free to add them to comments. I think Ruth may be looking into making a PDF of all the tweets – or some other collection of the stream? If anyone has ideas on this front, by all means add a comment.

Thanks again all who joined and contributed - I enjoyed it and found it useful too.

Coeliac disease in the Daily Mail: a response to comments

2011-05-29T14:55:00.002+01:00

I received a number of emails in response to my article in the Daily Mail last week, about coeliac Katrina Robinson, who experienced neurological symptoms for many years prior to diagnosis, and the failure of her doctors to suspect CD. They were mostly very positive. The reaction generally has been good from various quarters, but I thought I’d talk here on a few issues that have arisen from comments to the article itself.

First commenter, Jen from the Wilds of Scotland, argues that ‘gluten is a protein that EVERYBODY can well do without’ and that gluten ‘gums up the villae [sic]’. While it is true that gluten is not an essential protein, not everybody needs to avoid it, and the idea that it ‘gums’ up the villi is not an accurate reflection of what goes on in the coeliac-affected gut. It is possible that this anti-gluten commenter has fallen foul of the ‘it works for me’ fallacy: in this case ‘gluten exclusion works for me therefore it’ll work for everyone else’. I consider this notion a real and serious obstacle to the public understanding of health, and will be blogging about it further in due course.

Emily from Lymington advises that “If you suffer from IBS, multiple allergies, or just so many different complaints one after the other, just go gluten free and see if it makes a difference, you will know in about 3 - 6 weeks…” This is poor advice – action which you should not undertake without the supervision of a doctor or dietitian. As I have said many times, experimental gluten exclusion may well make you feel better, but this does not necessarily imply a gluten sensitivity or coeliac disease, for reasons touched upon here.

Furthermore, if you are an undiagnosed coeliac, removing gluten will make a future diagnosis difficult as blood tests may not reflect the true picture – you will need to go back on the gluten first. You may not want to – meaning a proper diagnosis may not be made, so you won’t qualify for prescription foods – and, if you do, symptoms could be more severe than before. “Wheres [sic] the harm?” Emily asks. There, Emily.

In the article, I explain that my case study Katrina undertook other food sensitivity tests “ironically, to be told she didn’t react to wheat”. Brenda from Wembley objected to this, rightly pointing out that “coeliac disease is NOT an allergy, but, an auto-immune disease. Therefore, this is why one would not react to an allergy test for wheat.”

Point taken, but I think this part of the piece suffered from a little editing. It was ironic that she was told she had no issue with wheat, and it was an important point to make, because most people don’t understand the various types of food hypersensitivity there are. As far as she was concerned, wheat was not an issue – so she thought no more of it, potentially steering her away from looking for the real answer, and allowing her to continue eating wheat without fear or suspicion.

Debbie from East Sussex also commented on the description (which appeared only in print, and in the ‘sell’ for the article) of coeliac as being a “worryingly common allergy”.

It’s worth pointing out to non-journalists that the journalist rarely, if ever, writes the headline, captions, sidebars or other ‘bits and pieces’ that complete an article – just the main story. The extras are written by sub-editors or section editors, and I can’t know why the word ‘allergy’ was used, but it’s possible that those involved weren’t aware that coeliac wasn’t a specific type of allergy, and also possible that they elected to use the word as a simplified (if strictly speaking inaccurate) means of conveying the general idea to the wider public. It’s not ideal, I know, but I’m generally of the view that we should let this one go, on the whole, as there are bigger coeliac fish to fry, so to speak.

Thanks for all your comments.

Coeliac / gluten free tweet up - 2nd June 2011

2011-05-26T14:14:00.003+01:00

Right, it seems that Thursday June 2nd 8-9pm GMT is the preferred time and date for a UK and Ireland coeliac and gluten free Twitter chat - or 'tweet up'.

The hashtag will be #gftweetup.

I'll come up with a topic or question to start us off on the night.

Those of you on Facebook will I'm sure like to spread the word there. Obviously, let's spread the word on Twitter too - and I'll issue reminders in the run-up next week.

I'll add any important updates to this thread (eg in the event of Twitter overload on the night) and if you have any thoughts, please feel free to leave a comment.

Coeliac / gluten free tweet up…. And a little piece in the Mail

2011-05-24T15:23:00.001+01:00

Right – there’s a bit of chat on Twitter from some coeliacs and gluten-freers about a possible tweet up. With so many cc’d in, we’re running out of space and negotiations for a convenient time are going to be tricky.

So can I get the ball rolling by suggesting 8pm-9pm this Thursday? And a hashtag of #ukgfchat ? Feel free to comment about your good / bad times and hashtag suggestions! All welcome!

In other news, if you’ve missed it, I’ve a story in the Mail today about a remarkable lady called Katrina Robinson, whose story of undiagnosed coeliac disease – manifesting in awful neurological symptoms and ill health – really deserved to be told. Read it here.

The Coeliac UK Gluten Free Challenge: Day 7

2011-05-22T22:48:00.004+01:00

When I started the GF challenge six days ago I’d imagined this day would be the easiest – I would have a laid-back Sunday and do a spectacular GF meal to round-off. Then I’d knock back a couple of Estrella Damms and toast all the coeliacs in the land.

But I hadn’t counted on a dear cousin of mine turning up in the city unannounced from Italy with a football squad (literally) of mates in tow, to take part in an Anglo-Italian vs Italian amateur soccer competition in south east London. I knew full well today would not be about the football – the team had already lost 5-0 in a preliminary round yesterday – but I was invited along to partake in cheering, banter and – there is no other more fitting word for it – gluten.

Beers, breads, sausages, burgers, pizzas. If it didn’t have gluten in it, it had lactose in it. If it didn’t have lactose in it, it was an olive. And so I ate an olive. And drank orange juice. ‘That’s very acidifying, you know,’ I was teased.

It was a bit of a shame. My cousin was unaware of my GF challenge beforehand and had expected to have a pint with me. We’re similar ages, we played together as boys in the long hot Italian summers of the late seventies and early eighties, and we see each other perhaps every two years. How could I not have a drink with him?

But I didn’t. I had fun nonetheless – it was great to see him and he didn’t pressure me to give in – but the sometimes concentrated difficulties of staying on the wagon are something I’m relieved and grateful I don’t need to experience again. Really, I am very lucky.

So after a long day out I’m afraid it was a quick and unremarkable dinner, then, of a (mostly) GF meal of veggie tofu stir-fry with rice noodles, which I adapted slightly to make totally GF (basically using tamari sauce instead of usual soy sauce).

Ingredients (for 2)
150g rice noodles
About 150g tofu pieces
1 large carrot
1 stick celery
1 small red onion
1 red or green pepper
Fresh ginger (a thumb), garlic (a clove or two) and chilli (a red or green one)
Some chilli jam
Lots of Tamari soy sauce
Smattering of herbs

Stir fry the ginger, garlic and chilli in a little groundnut oil for a minute and then add all the vegetables, sliced. Meanwhile cook the rice noodles according to instructions. Add a teaspoon of sweet/savoury jam (I used a sample of fiery chilli and pomegranate jam I’d been given at a food show), generous quantities of Tamari soy sauce and some dried herbs, if using. Add tofu, and heat through, then when noodles are ready, drain and combine with stir fried vegetables, adding any fresh herbs, if using. Serve.

Okay, I guess the time has come to sign off on the GF challenge. I’m only partially satisfied with myself. I’d wanted to cook with millet or amaranth, and I wanted to do something with polenta, which I grew up with and is such an interesting food to work with, putting paid to the myth as it does that risotto is the only GF meal Italians eat. One for the future, perhaps...

A fear this week was learning something that I’d failed to put into the book. I’m relieved that this didn’t happen – but the week did bring the truth of it all home to me to a degree which you can’t quite conceive of when you only dabble a bit in gluten exclusion and label scrutinising (as I did when researching the book). I mean – I knew it was expensive, I knew it was difficult socially, I knew options were limited. And coeliacs had always told me these things, and more, and I could see them myself too. But to actually live them, and not only experience them in some ephemeral or abstract sense, really socked it to me.

Despite this, I don’t feel I’ve really experienced the coeliac life. A one-week experiment, knowing that I won’t suffer any consequences if I slipped up, with that tantalising light of tomorrow at the end of the tunnel – a luxury coeliacs don’t have – can’t really compare to a lifetime of gluten exclusion with the reward of possibly weeks of ill-health from any slip up. It is impossible for anyone to replicate what coeliacs have to go through. And while I imagine it does get easier as time goes by, the temptation and/or presence of gluten can never quite be removed entirely – much like cigarettes to an ex-smoker, or a drink to a recovering alcholic. We live in a boozy, smoky and gluteny world – and people have to adapt to it.

What have I learned? That it is ridiculously easy to mess up – as I did with lactose – although I imagine if you subsequently suffer the physical consequences of such errors, you’d probably rapidly sharpen your game. Something that has stuck with me is the surprising fact that many young women appear to have never heard of gluten. I’d assumed that most would have read enough women’s magazines, filled as they are with detoxing and dieting stuff and nonsense, to have learned what gluten is, even if not in the context of coeliac disease. It wasn’t true, in my experience.

What did I miss? Occasionally the gluten-containing food I like, of course – but mostly I missed having unlimited options. I missed not having to think about what I forked or spooned into my mouth – the luxury of culinary freedom, denied to coeliacs and gluten sensitives.

I want to sincerely thank all the people who have read the blog over the last seven days – and especially those who have commented. Others have emailed privately. There’s been some smashing support on Twitter too – with RTs and encouraging messages. There are too many of you to name individually but I can assure you you all really helped me along. I feared being ignored – or being accused of being patronising – but it was great so many of you stopped by and were nice, even occasionally so about my recipes, like the squash rice pie.

So, the end is nigh – just a few hours – and I can almost taste tomorrow’s lunch of toasted rye bread. I have a last Estrella Damm before me, and I guess life for this lucky boy is pretty good…

The Coeliac UK Gluten Free Challenge: Day 6

2011-05-21T20:48:00.004+01:00

Today was probably the first day where I felt that I wasn’t doing anything out of the ordinary: the GF diet had just been a part of my day today like sleeping and breathing and bathing and writing. I just ate what I ate and didn’t think much about it.

It was also the first time where, just once or twice, I caught myself thinking, “I am actually going to succeed in doing this” – and I don’t mean that in a cocky way. I just assumed originally I’d mess up or sneak some gluten during a moment of weakness. It hasn’t happened. Of course I’ll maintain my guard, though: pride comes before a fall, and all that.

I had eaten half of my dinner before I’d realised I’d not photographed it, but I don’t think it’s much of an exciting recipe anyway, so a quick summary I’m sure will do you.

Throughout the week, as I’ve been concentrating on cooking a hot GF meal of an evening or eating a hot GF meal when out, what has failed to strike me is the fact that I haven’t been eating many raw vegetables, discounting a bit of tomato in my GF rolls. Today that realisation truly set in. I don’t want to sound all virtuous, but I did just fancy some crunchiness and greenness today, and the more I thought of it the more I felt my body really needed it, so I knocked up a quick cold potato salad with a piece of cooked salmon on a bed of romaine, spring onions, avocado, cuke and the coriander which was left over from yesterday's recipe. Dressing was olive oil, lime juice, mayo and mustard (all labels checked).

It’s obviously a simple GF meal, but it struck me while I was eating it that it was actually a very good meal for a newly diagnosed coeliac. B vitamins in the greens, calcium in the fish – and prebiotics in the cold potatoes. When potatoes cool, they form a type of starch called resistant starch, which is thought to be beneficial to gut bacteria – the health of which could be compromised in coeliacs, especially when newly diagnosed. This is something I touched upon in my book, Coeliac Disease: What you need to know, and it’s an area which interests me very much.

The end of another day, then. Tomorrow is the last. I would’ve expected it to be the easiest, perhaps, but it could turn out to be the toughest, as it looks like I’ll be hanging out with a large group of Italians at football. Most of us are born with a slice of pizza in one hand and a bottle of Peroni in the other, so avoiding glutine could be tricky if I get sucked into any eating or drinking shenanigans. Though in spite of its wheat-loving reputation, Italy is a terrific place for coeliacs, I’m increasingly realising, as Sian, AKA Gluten Free Mrs D, is exploring most interestingly on her blog at present.

So wish me luck for the final stretch. I’ll have a couple of Estrella Damms waiting for me when I get in tomorrow evening!

To learn more about Coeliac UK's Gluten-free Challenge, click here.

The Coeliac UK Gluten Free Challenge: Day 5

2011-05-20T21:46:00.004+01:00

Today’s recipe relies heavily on a number of ingredients it appears quite a few people dislike – quinoa, coriander and celery.

Quinoa is a gluten-free pseudo-grain from South America. People say it’s nutty but to my buds its averagely bland, with a pleasant granular texture. I like its appearance when cooked – transluscent beads, with a white tail or ring, like miniature little saturns.

Celery is far more interesting cooked than raw. My mother roasts it and I like it both braised and stir-fried. So even if you hate it in salads or stuck into a bloody Mary, try it in other forms if you haven’t already. If you can’t stick it, replace here with a fennel bulb.

Coriander is a lovely citrus-y fragrant herb – but if you hate that as well you can always use parsley instead.

Ingredients (for 2)
150-200g quinoa
150-200g cooked prawns
2 small carrots
2 sticks celery (or a fennel bulb)
1 small onion
2 tsp bouillon powder
1 lime
Lots of fresh coriander (or parsley)

Rinse and drain the quinoa then tip into a saucepan along with all the vegetables, chopped small. Add enough water to submerge the ingredients and add bouillon powder. Bring to a simmer and cook, adding more water as it’s absorbed or boils off. When the quinoa starts to change appearance and go transluscent, add the prawns and continue to cook until the white germs of the quinoa are detaching and the water has all been absorbed. Remove from eat and add juice (and some cells) of one lime and stir in lots of chopped coriander or parsley. Serve.

This is the first recipe I ever tried with quinoa, and although I sort of made it up myself, it was heavily influenced by Michelle at Foods Matter, a big fan of quinoa and coriander (and lentils and okra…) whose recipes are always imaginative and well worth trying. There's an interesting looking quinoa, courgette and okra one there at the moment...

To learn more about Coeliac UK's Gluten-free Challenge, click here.

The Coeliac UK Gluten Free Challenge: Day 4

2011-05-19T22:55:00.004+01:00

I’ve lost the hesitancy when asking for gluten free; it no longer feels as if it might be a kind of ‘whisper-it’ word. I’m asking everyone: including several newsagents whether they have any GF snack bars (they didn’t know what it meant), and the chap at the local off-license whether he stocked GF beer (he didn’t – but he knew what it was; hopefully he’ll get some in). Maybe I’m merely challenging and daring people to roll their eyes at me and be rude or sarcastic – sooner or later surely someone will? – and I’m curious how I might react.

I spent the day with two of my favouritest friends. First up was H, who was hungry. I let her decide where we would eat and she chose Carluccio’s, pipping Yo Sushi. A chirpy young Neopolitan waitress served us, and I quite apologetically told her I required gluten free (why apologetically, I’m not quite sure).

“No problem – I’ll get the gluten-free menu.”

Now I’d heard a few positive noises about Carluccio’s on the GF front, but this still came close to making my eyes water. I was so chuffed I slipped enthusiastically into Italian. Turns out the waitress was a former employer of a major GF food company and she really Knew Her Stuff. I think she was the first non-coeliac all week who had used the word ‘coeliac’ with me (or ‘celiachia’ in this case), and also as if it were just another word (which of course it is).

Having expected to order a risotto, I instead ate a corn and rice pasta – beautifully yellow and cooked al dente – with a red sauce, and it was perfectly agreeable. My friend put away the bread nibbles and a lasagne. Credit where it’s due – Carluccio’s deserve it for a GF menu. But could they perhaps go a little step further and just get a little GF bread or crackers in too? I don’t want to be moany but I really fancied something with the olives!

We went elsewhere for sweet. But we failed, because at the coffee bar we randomly chose at St Pancras station, they had no GF cakes or desserts. I had tea only. And, I swear, it is only as I am writing this and remembering it that I have realised I have gone wrong – I put milk in my tea, thus failing the lactose-free part of my experiment. How very easy it is to slip up.

Later I went to visit my old mate M. He did, actually, roll his eyes and groan when I told him about the week’s diet plan – albeit good naturedly – and then proceeded to grill me on it. Can you eat cous cous? What about semolina? I’ll let him off the sarcasm, not just because he’s a pal and I didn’t want to boff him on the nose for his dissent, but also because he was genuinely interested and I taught him a lot.

That’s Awareness Week in action, right?

To learn more about Coeliac UK's Gluten-free Challenge, click here.

The Coeliac UK Gluten Free Challenge: Day 3

2011-05-18T21:09:00.003+01:00

“Gluten free, gluten free,” repeated the female checkout assistant at my local Co-op, after I’d repeated my request. “What is gluten free?” She turned to her male colleague. “Do we have gluten free bread?”

He in turn looked at me as if I were a recent visitor from the moon Weirdo which orbits the planet Oddio in the Galaxy of Fruitloop. Baffled looks were exchanged between the two.

Part of me wasn’t surprised at this – I’d been looking for a sniff of a ‘free from’ section for a few minutes, and had found nothing. The only visible members of staff were at the tills. The two had clearly never been asked anything like this before.

I am talking, it bears repeating, about a household-name supermarket in the largest city in Britain – albeit a smallish branch.

Male assistant, taking advantage of a break in customers, led me to aisle 1. We stopped at the wheaten loaves. He turned to me. He pointed at all the bread. “This is all the bread,” he announced, I suppose presuming I might have failed my Bakery Products Awareness ‘O’ Level.

“That’s wheat flour bread, though. I’m looking for gluten free.”

“What kind of packet does it come in?”

“Well it varies.”

“What is the brand?”

“There are many types. Look – if you’ve never heard of gluten free, I imagine you don’t have it...”

“I’ll check with the manager.”

He checked with the manager. The manager had no gluten-free bread either.

Had I been less drenched after being caught in the rain, had I been less tired after a trip into town (see below), had I been less hungry after about seven hours without food – then I’d have asked to see the gluten-free-bread-less manager and asked him why he and his supermarket were gluten-free-bread-less. But I wimped and trotted off, equally gluten-free-bread-less, very, very grumpily.

It had been an otherwise decent day: the first where I’ve felt I’ve eased into a safe and happy rhythm with my breakfast, lunch and extras. I’m established on a dairy free dessert with fruit and seeds for breakfast, GF bread rolls with salad-y or veg-y stuff for lunch, hemp milk or rice milk in my brews, and a Mrs Crimble's macaroon (just two so far) for when I need a sugary perk. All good.

This afternoon I was at the House of Commons for a reception with the All Party Parliamentary Group on Coeliac Disease and Dermatitis Herpetiformis, as part of Coeliac Awareness Week. It was nice to catch up with familiar faces from Coeliac UK, whom I’ve got to know over all the years I’ve been writing about coeliac disease, and some health journalists, as well as others on the coeliac ‘circuit’. Plus, it’s always nice to chat to the ever friendly Dr Chris Steele, Coeliac UK’s Health Ambassador, who also kindly wrote the foreword to my book.

Among well-known faces giving short speeches alongside Dr Chris was Esther Rantzen, who proved to be an entertaining speaker, teasing the photographer amusingly, and who told of the experience of her daughter (which I blogged about some weeks ago). Also speaking was Coeliac UK’s Food Ambassador Phil Vickery, whose passion for GF cooking and awareness came across strongly. Dr Chris, for his part, recalled the ‘celebrations’ he triggered in the Coeliac UK office when he phoned in the news of his diagnosis two years ago – cue much laughter.

The oddest thing, as far as the food went, was that there was a fine spread of gluten-free food around… and I didn’t have it. I can’t say why. Perhaps I felt it was not there for me.

However your roving reporter, ever with his ear to the ground, did pick up on a bit of industry gossip. This may or may not be well known or hush hush, but a little bird may or may not have whispered to me that, next year, The Allergy Show may or may not be branching off and heading to a major northern city, while still remaining in London too. Can we all handle two shows? My legs are jellifying at the mere thought.

You may or may not have heard it here first…

To learn more about Coeliac UK's Gluten-free Challenge, click here.

The Coeliac UK Gluten Free Challenge: Day 2

2011-05-17T21:31:00.006+01:00

I woke up early and felt lively. A good sign? If you were reading yesterday, you’ll remember I almost failed the challenge before I’d started it, but today was free of near misses. Turns out I was also being alarmist about the pea ‘yoghurt’ from Redwood (I’m also trying to go lactose-free) – a spoon of it went well with my morning fruit and nuts, although it was extremely sweet. Plus, hemp milk from Good Oil works much better in tea (and coffee) than Kara coconut milk, I found. Lunch was slices of GF sourdough bread from Sunnyvale which I’d picked up in Holland and Barrett – a bit dry but far more interesting and tasty than I’d imagined – with tomato and avocado.

The day was characterised by little fleeting moments of sharp highs and lows. Workwise there are lots of interesting things going on – but today a coeliac article of mine maddeningly failed to run. This was mirrored in my ‘food mood’ – one second I was dreading the next GF meal, the next excited to be eating in a wholly new way. I imagine, magnified by several factors, this is something a lot of food sensitives experience. I think a lot of it was to do with fretting about this evening’s meal, which all day I’ve been expecting to go horribly wrong…

But first to Sainsbury’s to pick up some xanthan gum. Mine is a small local one, and the ‘free from’ section is barely wider than me. They had the gum, but while browsing the Doves Farm flours, I noticed that their standard wheaten flour was sitting alongside two of their GF flours. The label for the product was in place too – so this wasn’t just a shelf-stacking misplacement. Clearly an error, then? While the ‘free from’ section wasn’t signposted as such, everything else around was GF and/or DF, so surely it must have been?

A key point of Coeliac UK’s Gluten-free Challenge is to boost awareness. With that in mind, I called for the manager. He was polite and open from the off. I led him to the free from section and explained the problem as I saw it: that a rushed GFer could easily pick up the wheat flour in error. He listened and nodded attentively and took it more seriously than I’d dared hope. He thanked me for letting him know, and promised he’d investigate at once. Ten out of ten. I’ll let Sainsbury’s ‘free from’ team know too, and pay another visit later in the week.

Supper was to be Parmesan Pumpkin and Rice Pie. This is a recipe, which I’ve slightly adapted, from the little corner of Parma Province in northern Italy which my folks call home. It’s basically an eggy cheesy pumpkin risotto (of sorts) baked in a thin and crispy no-fat ‘pastry’, usually made from wheat flour and water. I was nervous about this crust, but used Doves Farm plain white GF flour blend with a dash of xanthan and it worked surprisingly well. Sadly, fearing disaster, I chickened out of inviting a pal over and am now kicking myself. Still, enough for some tomorrow…

Ingredients (for 2)
For the filling:
Just under a mugful of rice – I used pudding rice, but any risotto rice (carnaroli, arborio) is also ideal (but don’t use other rices)
Half a butternut squash (or other pumpkin-y vegetable)
Some bouillon powder (I used one and a half teaspoons)
Some dried herbs
Two eggs
Lots of grated Parmesan and/or Grana Padano

For the crust:
100g Doves Farm plain white GF flour blend
Half teaspoon xanthan gum
Water as required

Grate the squash and fry gently in olive oil. Sprinkle in bouillon powder and herbs and add a little water as it dries. Keep cooking and adding splashes of water if required, until the mixture becomes a bit pulpy – around ten minutes.

Meanwhile cook the rice in lightly salted boiling water. Cook it to the point where it is still undercooked, but if you had to eat it, you just about could – albeit with a lot of chewing. Drain thoroughly.

Combine the rice and the cooked squash and set aside to cool.

Next, mix the flour and xanthan gum in a clean bowl and then add water gradually, until you can work the mixture into a dough. Roll out thinly to desired scale. (I used a non-stick baking tray 12 inches x 9 inches and under 1 inch deep.) Transfer dough to tray, pressing down firmly and filling in the inevitable tears and gaps.

Once the rice / squash mixture is cooled to around body temperature, add the grated cheese – a massive handful – and two eggs. Mix until fully blended. Add a bit of tepid water if mixture seems too dry. Dollop the mixture into the lined tray, spread evenly, and bake on a fairly high heat for around 10-15 minutes, or until the crust or some grains of rice begin to char and the pie looks done.

Slide the pie off onto a rack and cool for ten to fifteen minutes before cutting into squares for serving.

The crust, as can see, was a little ragged, and a little chewy on the underside, so perhaps a minute or two in the oven before adding the rice-squash filling and popping it back would help if you're attempting this. But it tasted really good. Thanks to both Micki Rose and Michelle Berriedale-Johnson for GF flour and xanthan gum counselling!

No recipe tomorrow, as I’ll be finishing off the pie (cold, it’s excellent picnic food, by the way), but before that I’ll be at the House of Commons for a reception with the All Party Parliamentary Group on Coeliac Disease. A report right here tomorrow night…

To learn more about Coeliac UK's Gluten-free Challenge, click here.

The Coeliac UK Gluten-free Challenge: Day 1

2011-05-16T20:52:00.009+01:00

I almost messed up within a minute of rolling out bed, bleary-eyed. Having brewed up my morning caffeine, I reached into the fridge for my usual milk-replacement of… Oatly. And then realisation jolted me awake: It’s probably not made from GF oats. It was a handy little warning against complacency. I can’t even excuse myself with an admission of having accidentally dropped my guard: I hadn’t even erected the bloody guard in the first place.

A bit mortified at how close I’d come to shameful catastrophe nine hours after midnight, I dug out another whitener in the shape of a sample of Isola Bio rice and almond milk I’d been given at the Natural Products Show – pleasant, but very sweet – and I was away.

Breakfast is typically fruit and yoghurt. No gluten there, but yoghurt, I decided last week, should also be off-limits, on the basis that some newly diagnosed coeliacs are also lactose intolerant. I know this is about awareness and understanding, but I also want to challenge myself, and eat differently. I used Kara’s excellent coconut milk to make a kind of fruity squishy coconutty compote with berries and banana, with pumpkin seeds atop for bite. It was good and I felt virtuous.

I had kept pre-planning to a minimum, and got little food in in preparation. This morning was designated for a GF supermarket shopping trip. All the things coeliacs I’ve interviewed over the years have told me are, of course, utterly true, but it’s sobering to experience it properly: yes, it is much more expensive, and yes, it does take much more time, and yes, it is maddening when you can’t find what you want.

I went to Waitrose and Holland & Barrett. I bought some very odd-looking yellowish bread – the weight of which would make your average brick feel undernourished – and some Dietary Specials ciabatta mini rolls (£2.49 for 4!) which I know are good. I bought a pea protein ‘yoghurt’ from Redwood, about which I have low expectations and high dread, and some Tamari wheat-free sauce to replace ordinary glutenous soy sauce. I bought some eggs, lots of vegetables, Doves Farm GF flour, limes, herbs, ginger, tofu, and, naughtily but with total pleasure, a little salami. Naughtily because I am supposed to be vegetarian; with pleasure because I am Italian. If you’re taking my pasta and my pizza, then I need to claw something back from the gods of banned foods.

Lunch was warmed rolls with homemade cabbage and carrot slaw and some tomatoes. It was tasty but even after I’d eaten all four rolls I remained hungry. I usually eat dense, filling rye bread for lunch, and I can’t deny I missed it.

Afternoon was spent working on book promotion and fielding queries - and discovering that coconut milk and tea Does Not Work. The support for the book so many people have shown me looks set to be eclipsed by that being demonstrated online for the #gfchallenge, as it’s been hashtagged on Twitter, and those taking part. I’ve been really cheered today by Twitterers geeing one another up, and encouragement and advice has come from many people, so big thanks already to Annie of the eponymous Supper Club, Pippa ‘Intolerant Gourmet’ Kendrick, the teams from Coeliac Kids and 24Vend, dietitians like Nicola and Emma, and others I’m omitting because a rollcall of thanks any longer than this on your first day is perhaps a bit OTT.

Anyway, to supper, which was rice and quinoa penne with spicy tomato sauce. Deliberately simple for day 1. The sauce is one I knock up quickly with ordinary pasta, and have served lots of friends over the years. Among Brits the first impression is, usually, ‘Where’s the sauce?’, but if you use intense flavours you only need a little. I love the way the British accept foreign cuisines and incorporate them into their own meal-plans without fuss or question, but I’m less keen on how they sometimes adapt them. Pasta swimming in lakes of red sauce is, I’m afraid, a culinary phenomenon unique to these shores, and I’m not sure where or how it might have started. It really isn’t the way to best serve it. Go for quality not quantity of sauce. Think intensity of flavour, and don’t drown the pasta.

Ingredients (for 2)
200-250g Hale and Hearty Rice and Quinoa Pasta
A punnet of fresh baby plum tomatoes
Two cloves garlic
1 red chilli
A chunk of salami
Pinch of sea salt
Lots and lots of dried marjoram

Chop up the choppable sauce ingredients and set to simmer in a pan (you can fry the chilli and garlic in olive oil first if you like). Add the salt and herbs. Meanwhile, boil pasta in salted water. As the sauce starts to cook, it will dry, so spoon in some of the pasta water. When pasta is cooked – about 8 minutes I think – drain and return to pan, adding the sauce. Cook through and serve.

As you’ll have seen, the pasta does break up a little, but perhaps I cooked it too vigorously and a gentler simmering would help prevent it.

That’s it from Day 1. Although I flirted with GF cooking and shopping when I was researching the book, I suspect this is my first proper GF day since I was weaned, not counting the four days spent in hospital with suspected appendicitis about five years ago, when I was nil by mouth. Thankfully, I’ve certainly enjoyed it more than that experience, and enjoyed it more than I thought I would generally, as I have writing about it too. Would love to hear about your Day 1s too…

To learn more about Coeliac UK's Gluten-free Challenge, click here.

The good, the bad and the lovely: signing coeliac books at the Allergy Show

2011-05-12T10:59:00.001+01:00

Today sees the publication of my book, Coeliac Disease: What you need to know. It has slightly crept up on me, as it was unclear when exactly in May it would hit the shelves, but my publisher has confirmed that today’s the day.

As I recounted a few days ago, last weekend I was at the Allergy Show, selling advance copies. It was my first ‘book signing’ (of sorts) and it was great fun. When my first two books on food intolerance and on food allergy came out, I didn’t get the chance to engage directly with readers, and probably wouldn’t have had the confidence to do so even if I had, given I was new to authoring. But with several books now under my belt it felt surprisingly natural to both meet and talk to potential readers about my book, and promote it.

The event was extremely busy – ten thousand visitors over three days – and our modest stand did get a bit overwhelmed at times. But it was invigorating to be so stimulated and questioned by curious coeliacs. Lots of people flicked through the book when invited, and many made positive comments even if they didn’t buy a copy. “It feels good in my hands,” was perhaps the oddest complement I got!

I was asked a lot of questions about why I wrote the book and what it contained that was new and important – and rather than repeat what I’ve already said elsewhere, see my article on Foods Matter in response to those questions, and which seemed to satisfy most sceptics.

I was also asked what qualified me to write the book. There were raised eyebrows when I told visitors I wasn’t coeliac, but I’ll repeat what I said: it’s an advantage, to my mind, to write a self-help book on a condition you don’t have, because it compels you to research it in great depth and interview many sufferers and experts – and you’re unable to fall back on your own thoughts and experiences, which may not be representative of those of others.

Not everything went swimmingly and there were some amusing moments… I forgive the lady who thought I was a woman (before she’d met me, I might add); I forgive those who were clearly fishing for a free copy (if only you knew how much I earn…); I forgive the lady who took one flick through the book, went “Urgh – no pictures!” and promptly dropped it like a nuked potato (I laughed all day); and I forgive the girl who got sticky chocolate fingers all over a copy (we’d given her the chocolates, after all).

But I can’t yet forgive the lady with sticky fingers of a different kind. A writer colleague of mine, Simon Whaley, had warned me that, very occasionally, books were prone to go missing in action at such events, and one dutifully took its leave. It’s fair to say I was pretty upset, given I’d paid for the copies, was making little on them on the day, and put four or five months of my life into writing the book. If you’re reading this, madam (for I was surrounded by madams at the time, without a sir in sight), I hope you find what you’re looking for and then realise that a donation to Coeliac UK might be in order.

Enough of that. Everyone else more than made up for it. I felt humble when some took the time to thank me for taking an interest in the ‘unsexy’ subject of coeliac and for raising awareness of the disease. And the delight of people when I offered to sign their copies will stay with me for a long time. I was really quite touched – especially by those too shy to look me in the eye.

My highlight? Undoubtedly the lady who mistook me for the author of the book’s foreword, Dr Chris Steele. I thought she seemed a little too happy to see me…

You can buy the book from FoodsMatter.com for the special price of £6.99 (p&p included) – or for other UK and international points of purchase, click on the 'Buy My Books Here' page.

Three days at the Allergy and Gluten Free Show: a few thoughts

2011-05-09T21:58:00.005+01:00

I am in the process of recovering from the Allergy and Gluten Free Show, where I worked for three days at the Foods Matter / Free From Food Awards stand, promoting both – as well as the spin-off site, Skins Matter, of which I’m deputy editor. Michelle (the owner and founder) and I, it’s fair to say, had fun, and while we succeeded in getting hundreds of signatories to our free Foods Matter / Skins Matter newsletter, in showcasing some of the winners of the Awards, and in tasting some delicious ‘free from’ products, we were also reminded of a number of more serious matters too.

I’ll quickly deal with the food first. I tasted nowhere near as much as I’d have liked, but very much enjoyed the M&S’s GF rich fruit cake, The Cake Crusader’s carrot cake, Steph’s GF Battenburg, Estrella Damm’s beer and G Free / Baked to Taste’s goat’s cheese and caramelised onion tart. There were a number of unfamiliar companies exhibiting, including Joss and Fria, which may become more familiar to us over the coming twelve months.

Let’s move on. In my role as a health journalist, I often attend exhibitions and shows as a visitor and so it was an eye-opener for me to attend as, effectively, an exhibitor. You quickly realise, when you’re on the other side of the fence, that shows of this nature are not about the products being exhibited at all – they’re about the people coming to see them.

I was cheered by the remarkable numbers of nutritionists and dietitians. They took the issues seriously and were out to find information for both themselves and their patients. I applaud the lot of them. Sadly, this only served to magnify the gaping absence of doctors visiting our stand. Unless they didn’t announce themselves, there was only one hero, who happened to be one of the best known in the country – Dr Chris Steele – but more about him later in the week. The dearth of GPs was, I’m afraid, extremely disappointing – especially given the negative stories of unsympathetic and unhelpful doctors that I was told about, one of which is coming up.

As for ordinary punters, meeting so many of them was sometimes invigorating and often illuminating. I must have chatted to hundreds. Each had their own unique story. Several stuck in my mind.

The lady with a wheat allergy AND suspected coeliac disease
Possibly the most extraordinary catch-22 sensitivity situation I’ve come across. She’d excluded wheat and gluten due to her wheat allergy, and was asked by her specialists to reintroduce it so that she could be tested for coeliac. Were she to do so, she’d risk her health and potentially her life. She rightly refused – meaning a diagnosis for coeliac could not be made, so she could not qualify for prescription food. A useful reminder that other testing procedures that do not require the reintroduction of gluten are urgently needed.

The lady with an olive allergy and olive oil sensitivity
Perhaps not the toughest allergen to avoid – although it is now, as she told me, very widely used in this country – but nevertheless I imagine a frustrating one, given this one is clearly so rare – and the lady in question seemed sad at feeling ‘unique’ in some respects, not knowing anyone with the same problem. I felt for her.

The children with multiple allergies
I did find this worrying because there were so many of them. Wheat, soya, nuts, eggs and dairy were but a fraction of it. Bananas, potatoes, sesame, corn, tomatoes, lentils, peas, chickpeas… the list in some cases seemed endless. So sad, and such a stress for the parents.

The father with a coeliac dad and a coeliac son…
.. both recently diagnosed, who’d been told by his GP that neither he, nor his daughters, need be tested for coeliac. They each have a 10% chance of having coeliac disease (possibly higher). NICE guidelines specify that first degree relatives should be tested for coeliac. All doctors should know this. Clearly not all doctors know this. It makes me a bit annoyed. The last line was an understatement.

There were many others. Some were clearly distressed at their conditions, many of whom just wanted to talk at length about them – I got the sense that, in some cases, it was the only reason they were at the show, for there was no one else prepared to listen for so long. Others were upset that the medical establishment had, in their eyes, and one way or another, somehow failed them. Others that life had dealt them a really tough card. “Why me?”

I certainly don’t want to give the impression that food sensitives are a morose, self-pitying lot because, as I learned, it is not true. There were a lot of positive, dynamic people, out to source as much info as possible in order to best deal with their or their children’s sensitivities, pointedly refusing to feel sorry for themselves and just getting on with the job in hand. Nobody exemplified this better than the girl diagnosed with coeliac – get this – the day before the show, who was out on a real mission to vacuum up as much as possible. I hope she’s reading – and I salute her attitude. So many visitors to the stand were laughing about their circumstances with great humour – it will, I’m sure, stand them in great stead as they move forward.

There was a huge turn-out, and if I had to pick one stand-out emotion from all those I witnessed – it was that of relief. Thank Goodness, in other words. Thank goodness that there is all this information, thank goodness that there are all these foods, thank goodness that there are all these people trying to help us – some of whom don’t even have any dietary restrictions themselves.

While at the stand, Michelle also kindly allowed me to sell advance copies of my new book, Coeliac Disease: What you need to know, and I’ll tell you all about that in a few days’ time.

Were you at the show? What did you think of the visitors and exhibitors? Let me know.

Statement from coeliac Anthony Demetre re: Saturday Kitchen remarks: still missing the point?

2011-04-19T19:59:00.003+01:00

Unless I missed it, the hoped-for apology following the comments made by Anthony Demetre on the 9th April’s Saturday Kitchen never materialised on the episode broadcast on the 16th, but last Thursday Demetre did issue a statement via his agent’s blog, which I only spotted Saturday evening, hours before a trip away, leaving me unable to comment sooner. Some may still not have seen it, as it appears very little noise accompanied it. I found it mostly disappointing, and I’ll comment a little on it here.

He opens:

"I am a coeliac and like others, I need to control my intake of gluten."

And already I feel the frustration rising. Coeliacs need to do more than control their gluten intake – they need to minimise their gluten intake.

He goes on:

"My understanding of this disease is that different people have different levels of tolerance, and I am one of the “lucky” ones who can succumb to a craving for pasta or the occasional croissant, once in a blue moon."

Speaking symptomatically, some coeliacs may not be able to get away with a crumb while some may be able to get away with a bite of bread – but that doesn’t necessarily reflect the internal harm that might or might not be going on. It appears from this that Demetre is unaware that lack of symptoms may not necessarily mean lack of damage.

As for “succumb to a craving for pasta”… well, this isn’t what the chef said on Saturday Kitchen. His words were: “I go on this diet.. no gluten for about three months and then for two weeks I just eat as much pasta and pizza as I can get hold of…”

To me, a two-week feast of pasta is clearly something more than giving in to some ‘craving’, and I’m not sure ‘once in a blue moon’ is equivalent to ‘once every three months’ either, although this is of course more subjective. Now I don’t mind what the truth is – as others have said, it is his business what he eats and when – but I don’t understand why, instead of clarifying his statement on his gluten-consumption, Demetre has chosen to replace it with something which appears to at least partially contradict it.

Next, he makes some apologetic remarks, and these do seem sincere. He points out that his comments were not intended as advice, and I do feel this is reasonable, as he was not recommending his approach – yet all this still fails to address the confusion his remarks may have caused some people new to the disease, or to any children watching.

The last thing I want to comment on is this edited line:

"I apologise for …. allegedly underplaying the seriousness of this condition."

Let’s be clear: he laughed. His ‘allegedly’ seems to me to imply that he doesn’t feel he did underplay the seriousness of the condition with that laughter, and I think it is this apparent denial, ultimately, that will leave a slightly bitter taste in the mouths of many coeliacs.

I still don’t feel he fully gets it. Do you? Or am I being unfair?

Restaurant staff and food allergy: still a way to go

2011-04-14T18:07:00.002+01:00

I have just received a press release from Wiley Blackwell entitled “Many Restaurant Staff are Undertrained and Misinformed about Food Allergies”.

It speaks for itself, really. The release concerns a study published in Clinical and Experimental Allergy and the bare facts are concerning for all with food sensitivities.

Research was led by Professor Helen Smith of Brighton and Sussex Medical School. Her team of researchers telephoned 90 table-service restaurants in Brighton to assess staff knowledge of food allergy and to determine how comfortable they felt providing meals to food allergic customers.

Here are some of the results:

* In one in three kitchens, common food allergens (e.g. eggs, peanuts, wheat, milk, nuts, fish) were not separated from other foods.

* One in five staff members thought an allergic customer consuming a small amount of allergen would be safe, as would removing the allergen from a finished meal (for instance, picking the nuts off a dessert).

* Only one third of respondents had received any sort of food allergy training – but 80% reported confidence in providing a safe meal for their food-allergic customers.

The release concludes with a note from Smith advising diners to remain vigilant and not assume staff are knowledgeable about food allergies and calling for more ‘rigorous and accessible training’.

This focused on food allergy, where lives can be at stake, but could easily apply to coeliac disease and food intolerance too. The coeliac community have recently been up in arms about a chef who appeared to show so much disregard to the condition that he claimed to have deliberately fed gluten-free diners gluten, but this research is perhaps a useful reminder that they – and others sensitive to foods – are more likely to be put at risk by carelessness, false confidence, ignorance and lack of training, than any deliberate act.

Coeliac chef Anthony Demetre admits to gluten gorging on Saturday Kitchen

2011-04-10T13:53:00.002+01:00

He’s not the UK’s Damian Cardone by any stretch of the imagination, but coeliac chef Anthony Demetre has hardly endeared himself to British and Irish coeliacs this weekend by revealing on BBC’s Saturday Kitchen on the 9th April 2011 that he maintains a strict gluten-free diet for three months and then “for two weeks I just eat as much pasta and pizza as I can get hold of” – insert inappropriate smiling from Demetre and inappropriate laughter from presenter James Martin – “because I can’t cut it out… completely fully because the body just rejects it when you do have it”.

You can see it on YouTube here.

As with the Cardone affair, the bloggers have started to come out in force. The GFGuerrillas have posted this morning, as has the Gluten Free Traveller, and both have complained to the BBC, as have many members of the gluten free message board.

For the sake of discussion, I will try to defend him. The gluten-free diet is difficult. For a chef, it must be particularly so – being exposed to tempting glutenous treats constantly. He is allowed to stick to the diet or stray from it as he chooses. As coeliac David Johnstone said amusingly on Twitter – “It’s his villi!” It could be argued he is entitled to air his views as much as anyone else, and that he was not encouraging coeliacs to abandon their GFDs.

That’s probably as much as I can offer him. I won’t repeat any of the comments and criticism that I’ve seen online (I agree with most of it, but not all), but I will add the following to the discussion pot:

1. Did what he say actually make sense? It was a non sequitur to me. He can’t cut gluten out because the body rejects it when he has it? So if his body didn’t reject it he could cut it out? What? Er, seems to me that he’s unable to cut out gluten because the temptation for pizza and pasta is, for him, too great. The Sated Coeliac is of the view that he mistakenly believes he needs to eat it occasionally, but I'm not so sure.

2. He – or someone – should have made it transparently clear that coeliac disease is very serious, and not some lifestyle choice or fad diet. We know that it isn’t, but others watching may not know that it isn’t, and may now assume that it is. Not good for general awareness. And what if newly diagnosed kids were watching? “If he eats pizza, mummy, why can’t I?”

3. That laughter was inappropriate. Perhaps from James Martin it was surprised nervous laughter, but this subject is no joke and it is this, ultimately, which I think the BBC are going to have to apologise for next week. I hope they do.

I expect this one will run for a bit. As I’m about to post, gluten-free champion Phil Vickery has given a strongly worded comment to Coeliac London. Possibly more later.

Damian Cardone vs celiacs / coeliacs and the gluten free: a very modern food intolerance

2011-04-08T10:06:00.004+01:00

Internet-savvy coeliacs will be aware of the recent furore that kicked off online concerning an American chef by the name of Damian Cardone, who on his Facebook page earlier in March made some unsavoury comments about gluten-free diners at a restaurant at which he worked, claiming to have fed them gluten-containing food. I think I first read about it here.

He wrote: “Gluten free is bullshit!! Flour and bread have been a staple of life for thousands, THOUSANDS of years. People who claim to be gluten intolorent dont realize that its all in there disturbed liitle heads.”

He goes on to describe how he reguarly serves gluten intolerants pasta made from high-gluten flour: “NOTHING ever happens! People leave talking about how good they feel gluten free and guess what, They just had a full dose! Idiots!”

I won’t bother with the falsity of his argument or foolishness of his logic – or poverty of his spelling. It’s been adequately covered by coeliacs in the chat forums and even on some of the news sites – mostly Stateside.

Because when spotted and the news spread, coeliacs the world over were understandably enraged. Twitter and Facebook feeds were given a thorough workout – a #damiancardone hashtag was even mooted on Twitter, but never really took off. The blogs came – then the comments came. There was even a video on YouTube.

I suspect a lot of people learned a lot about coeliac in those days – that the message about the disease got out to quite a few who’d never heard of it. Unquestionably, that is a good thing.

Cardone’s FB page has since, I understand, been taken down. The restaurant at which he worked has denied the deliberate poisonings could ever have happened (though they appear, as an innocent party, to be suffering the consequences regardless). No one to my knowledge has come forward to claim they were made ill by having dined there. Last I read, his whereabouts were not known.

Just writing that last line makes this whole affair feel like a bit of a witchhunt, and I’m sorry to say that last week that’s really what it felt like at times. One or two appalling commenters aside (wishing coeliac disease on him, calling for him to be poisoned), no single individual was responsible for making me feel like this – but in combination, as I watched the events unfold, the mass of angry voices did make me feel uncomfortable, irrespective of the educational benefits that might have ultimately come out of it. It’s good that this seems to have calmed down now, and suppose that the relevant authorities will take whatever action, if any, they need to take (first – interview him, I guess, but that’s for them to decide).

But this post isn’t really about him and what happens next. I’m more keen on exploring an issue that has come out of the whole affair, namely the views which people without food sensitivities have about people with food sensitivities.

In the mind?
We have to assume the chef’s rant faithfully represents what he thinks. (This is a real assumption, as he later acknowledged in comments that gluten could be a problem for some. And I don’t believe we’ve heard from him since.) Even if so, my point is he is far from unique. There are others out there who think like he thinks or appears to think. What is it in society that produces these views in certain individuals? Why do some – even those working with food – still think gluten-free is all in the mind?

Gluten-free is not all in the mind of those diagnosed with coeliac disease.

Neither is it all in the mind of those with coeliac disease, but still undiagnosed (at least four out of five of those who have it).

Neither is it all in the mind of those with non-coeliac gluten sensitivity, increasingly recognised as a genuine physiological condition.

But – and we cannot simply sweep this possibility under the carpet – it could well be in the minds of some people.

Food aversion is a little-known psychological response to food. It’s not especially common, but it happens. People react when they knowingly eat a food. They don’t react when they unknowingly eat it. The cases I’ve heard of have involved foods such as eggs and beans, not wheat, but I’m merely exploring possibilities.

There is another group of people we need to consider, and it is those who are self-diagnosing mild gluten intolerances. I’ve written before on this blog about how unsafe self-diagnosis is in the field of food sensitivities – and I suspect it happens a lot. I read an American piece online not long ago (maddeningly, I can’t now find it), in which a chef stated that he believed some in the food industry don’t take gluten issues seriously because some diners request a gluten free starter, a gluten free main, and then order profiteroles or cake for dessert, on the basis that they can manage a little gluten without side effect. It’s not hard to imagine a picture where some people, over time, come to view this sort of thing with some scepticism. And, from there, not hard to imagine a few of those getting very, very irritated…

Throw into the pot those people who avoid or try to avoid gluten for perceived health benefits (maybe they feel less bloated, or whatever) and you’ve got quite a diverse mix of people for whom gluten is an issue.

And the spectrum is wide – from those for whom a contamination of a single crumb can trigger days of exquisite pain and diarrhoea, to those who can and do consume a piece of cake. Each member of each group is an individual, presenting their own gluten requests and requirements uniquely, wrapped up in their own personality quirks, and informed by their own exposure to gluten-related information – whether accurate or inaccurate. And every impression formed after every gluten-related conversation will be different too. It’s sprawling and uncontrollable, and not all those impressions will be the ones we want.

Gluten confusion
Why is it such a mess? Well, how long have you got? Coeliac isn’t fully understood. Gluten intolerance certainly isn’t. Labelling isn’t perfect. People use different definitions for gluten. Coeliac is a weird word, which some can’t pronounce and many can’t spell.

That’s just the start of it. People say gluten makes them fat. Celebrities say they give up gluten to detox. You can roll your eyes about this but we live in a world in which people believe in astrology and crystal healing. Mumbo-jumbo exists and breeds and every one of us has a part to play in whether it continues to thrive or veers towards extinction.

I’m going to stick my neck out and perhaps be a bit controversial here, but I’d love your views on the following.

If gluten is a concern in your world, at whatever level, then my feeling is you need to be informed of gluten concerns across all levels – and, more importantly, how you present yourself on this front to the outside world.

If you’re mildly gluten intolerant, don’t call yourself a coeliac and then order a pastry – it is confusing to staff.

If you’re a coeliac who has been told your meal will ‘probably’ be free of gluten contamination but that this can’t be guaranteed, don’t take the risk and eat there – “it can’t be that serious a disease if they're prepared to risk it,” staff will think.

If you’re neither but dine with or serve people who are, then respect their decisions and requests and dietary quirks or needs and be supportive if needs be. Plenty of people have issues with plenty of foods for plenty of reasons – nut allergics, some religious groups and pork, vegetarians / vegans, those who find some foods unpalatable (eg sprouts), those who find some foods unethical (foie gras). Gluten issues are just another. We all have the right to eat and not eat what we want and what we can or can’t. And to be served food that we asked for.

People who work with food need to be taught, not only about coeliac, but that some people are gluten-free for other reasons. The word celiac / coeliac has to become mainstream. (Interestingly, Cardone does not appear to have used it.)

People need to stop being intolerant to food intolerances and other sensitivities. But that’s an obvious one.

Learn, teach, share, engage, discuss, argue and disagree, including with me. But let’s do it civilly, and try not to rant or lose our cools, even if the www has made it so easy for us to do so. Because Cardone’s comments are just one manifestation of an underlying problem which remains out there, and which is a collective responsibility to resolve in the best manner possible.

‘Free from’ food for allergy and intolerance – thoughts on a Mintel trend briefing

2011-03-26T17:01:00.003Z

Early spring is the season for food and health shows. I attended the International Food Exhibition in mid March, partly to hear a presentation by Mintel – who always give good presentations, in my experience – partly to look around for new and innovative ‘free from’ foods, and partly to shovel samples of tasty grub into my face. Yes it is a tough life being a food journalist.

Although a show for all kinds of food, I was a little disappointed at the dearth of ‘free from’ food – or ‘allergy friendly’, if you prefer that term (I definitely do not). There were some familiar names – the well regarded and excellent Doves Farm, the nut-allergic’s great friend It’s Nuts Free, the fun guys from Natural Balance Foods offering their tasty wholesome Nakd fruit bars – but overall I found little that was new to me.

Sania Rice CousCous was one exception, although I did not get a chance to taste it. Still as a gluten free alternative to wheat cous cous, it looks promising and it would be great to see it in the UK.

It was also a pleasure to meet the nice chaps from the delicious Kara coconut milk. I like this product a lot – much nicer than the awful coconut water you can get out there – and it offers a really tasty milk alternative for vegans or dairy or soya allergics/intolerants. A winner through and through.

And I also stumbled across ‘No Nut Nutty Choc Spread’ which appeared to be a really good new product for the nut-allergic. It’s from Clark’s, but nothing on their website about it yet. One to keep your eyes on, if you have nut allergies.

The Mintel presentation on ‘free from’ foods, by Jane Barnett, Trends & Innovation Consultant, was worth the trip alone. By way of introduction, she told us that gluten-free, lactose-free and lactose-reduced products have seen significant growth in the last few years, and that around 11% of all new food products introduced in the UK are now labelled as “low/no allergen” – which, when you think about it, is quite extraordinary.

In 2002, retail value sales of ‘free from’ foods here was just over £50m. In 2010, it was £195m. In 2012, it is forecast to be £350m. Again, extraordinary.

When it comes to gluten free products, UK leads the way in Europe: 29% of new GF products released in Europe over the last 12 months were from the UK, with nearest ‘rivals’ Spain with 15%.

With regards to lactose-free products, Finland – with a large lactose-intolerant population – leads the way with 28% of new lactose-free foods launched in the last 12 months. Austria were second with 14%, Germany third with 12%... and UK seventh with 5%.

This growth, say Mintel, has been driven – and will continue to be driven – by increased awareness, media interest and celebrity endorsement, wider availability of ‘free from’, greater spending on advertising, and perceived ‘health’ benefits of ‘free from’.

This last category deserves special attention, as it basically refers to people without food sensitivities buying into food for people with food sensitivities, much in the same way as carnivores may buy specialist vegetarian foods.

When shoppers were surveyed on whether they buy ‘free from’ and, if so, why, the following was found:
* 5% buy ‘free from’ because they or a family member have food allergies
* 5% buy ‘free from’ because they or a family member have food intolerances
* 18% buy ‘free from’ as part of a general healthy lifestyle
* 72% do not buy ‘free from’

In other words, almost twice as many people buy ‘free from’ because they want to than because they need to.

Those with genuine and properly diagnosed sensitivities are often – and, arguably, fairly – frustrated at people who aren’t sensitive to foods either claiming to be so or somehow living the ‘free from’ lifestyle.

The argument usually put forward is that because these people don’t fully understand and grasp the difficulties and realities of living with a severe allergy or intolerance, they don’t faithfully represent the issues to the wider world and aren’t the best spokespeople for or ‘faces’ of the cause to the general public and businesses. Examples I’ve read or heard about include those who insist on gluten-free starters and mains at restaurants – then order profiteroles for dessert because ‘just a little as a treat is okay’.

And as for celebrities? Who isn’t sick of another E-lister claiming to have shed the pounds after giving up dairy or gluten – promoting the idea that it’s all about weight loss and faddy diets?

Yet, according to Mintel, it is these groups who are driving growth in the sector – and, in consequence, at least partly ensuring that those with genuine food sensitivities get wider choice and improved foods in the years to come.

Do you think, then, we should be thanking them not moaning about them?

NICE, Allergy UK, food allergies, and unproven allergy tests

2011-02-23T21:29:00.010Z

So this week’s news is that NICE has published the first evidence-based guidelines for the diagnosis and assessment of food allergy in young people and children. Here's a link.

The papers have it covered, and pretty well. Here’s The Telegraph, here's The Mail and here's the Guardian.

Not surprisingly the media has chosen to run with the angle that NICE are recommending alternative food allergy tests should be avoided. To say this is not a new idea is an understatement. As Twitter user Andy Lewis of The Quackometer put it: “In other news, Elvis is dead.” I have, of course, discussed food allergy tests here before.

Again we’re faced with the question of semantics and definitions and the difference between food allergy and food intolerance. The former is well defined medically but the latter – other than lactose intolerance and a few others – is less clear cut. If it’s not a type I (IgE) or IV food allergic reaction, and it is not a lactose intolerance (or other sugar intolerance), and it is not coeliac disease – what else can it be? This is where the nebulous concept of food intolerances lies on the food hypersensitivity map. Many suspect they exist but what they actually are medically remains a puzzle.

Allergy UK’s Food Intolerance Awareness site warns readers of the lack of evidence for the effectiveness of some of the alternative tests available, and acknowledges that the evidence for IgG antibodies' involvement in food intolerance is “not clear”.

Elimination/exclusion diets and keeping a food diary, all under the supervision of a dietitian, are the way to go for suspected food intolerances, but Allergy UK add: "We recognise, however, that for many people it is quite simply not possible to keep a food diary. In cases where the person concerned wishes to take a test we refer people to Yorktest."

YorkTest is a private testing laboratory offering IgG testing. Remember, the evidence base for the IgG test in relation to food intolerance is "not clear" and NICE have just today warned it should not be used for food allergy. In fact, NICE felt IgG testing should be singled out for a particular mention, "given the science-based marketing of the test".

If it shouldn't be used for allergy or intolerance, why do Allergy UK refer people to YorkTest?

I understand that the charity represents the people, and I understand that an awful lot of people are struggling with health problems they attribute to food. With a poor allergy healthcare service, and doctors sometimes sceptical about food hypersensitivities - and not always that aware of them - they play an important role in supporting those suffering.

But it seems to me that they somehow feel obliged to refer their members to a private test - even when the evidence base is not sturdy. The reasons are given on their site here, and basically boil down to the mildly positive Whorwell study of 2004. But this is just one study, and this study only looked at IBS, and the authors themselves stated that IgG antibodies may only be relevant in a subset of IBS patients, and "they may not be relevant in food intolerance in general".

Yes, there are positive stories too, from people who have taken an IgG test, acted on it, and felt better. But as I have said before "it worked for me" reports are virtually useless, and prove as little as "it didn't work for me" reports. I addressed this in a previous post, The Lottery of Food Sensitivity Testing. We need good scientific trials, blinded, and placebo-controlled.

My view: Allergy UK should not refer their members to a test they appear to admit is unproven and which the NICE guidelines they claim to welcome declare should be avoided.

Esther Rantzen's flawed gluten 'proof'

2011-02-14T17:37:00.009Z

Esther Rantzen has written an article in the Mail about her daughter, Emily, who for many years has suffered from the debilitating effects of ME/CFS, and which until recently continued to effect her energy levels, despite ongoing improvement.

A few weeks ago Emily tried a no-carb diet – no grains or sugar. In days, a persistant troublesome rash on her hand had cleared. Her brother speculated on undiagnosed coeliac disease, and suggested she reintroduce gluten into the diet so she could be properly tested. Emily declined, but subsequently accidentally drank a smoothie which had gluten in it. Back came the rash. Rantzen deems this ‘proof’ – presumably that gluten was the cause.

It might well be the cause, but it is far from any form of proof. There are other possibilities when a diet is changed drastically. As I’ve written before on this blog, you could be experiencing the benefits of a more nutritionally diverse diet – we are not told what Emily consumed in place of her disallowed foods, and these could have provided her with previously missing nutrients that triggered health improvements. Eliminating carbs means eliminating junk foods, and that reduces intake of dairy products and additives, for example, which could be a problem for some. Wheat intolerance is another possibility.

Esther Rantzen does not appear to be entirely popular among the ME community, and interested parties can easily find some criticisms of her online in that regard, both in the comments to her article, and elsewhere.

I’m interested in the coeliac disease. This morning, Coeliac UK tweeted a link to the article, in words which implied that Rantzen’s daughter had been properly diagnosed with CD.

But nowhere in the article is that stated. In fact, the implication is to the contrary. Emily refused to go back on a gluten-containing diet in order to get tested.

I queried Coeliac UK and they corrected themselves promptly, although I must confess to being slightly uncomfortable about the fact they are linking to the story from their website.

Quite often, when newly diagnosed coeliacs who have begun a gluten free diet consume some gluten accidentally, they react very badly indeed – much more severely than they ever did when consuming gluten regularly.

Here’s my concern about this article: that readers experiencing symptoms will read Rantzen’s piece, and experimentally try a gluten-free diet to see whether they feel better. This is not the recommended advice, which is to continue with gluten and arrange to have blood tests. Stopping and then having to restart gluten consumption to get a proper diagnosis (which qualifies you for prescription gluten-free food) could make you feel very ill.

Why risk it?

Coeliac and allergy friendly food – easier eaten than judged

2011-02-10T22:51:00.003Z

I’ve spent a good part of the last fortnight sitting on the judging panels of the Free From Food Awards – founded by Michelle Berriedale-Johnson of www.foodsmatter.com, and which was set up to reward the innovation of food manufacturers who cater for those with coeliac disease, food allergy and food intolerance.

It’s my third year in the squad, and my second among the final select judging panel. It is, of course, great fun. It was a pleasure a year on to be reunited with my colleagues on the final day’s judging, all of whom far more important than me: Janie Suthering, president of the Guild of Food Writers, food networking queen, Jane Milton, Jeffrey Hyman of FDIN, Simon Wright of Organic and Fair Plus, and Sue Cane, one of the most well-informed coeliacs I’ve ever met. We laughed, we disagreed, we debated, we pondered, we ate. Mostly we ate.

It was interesting and it was challenging. Appraising food sample after food sample, meditating on taste, texture, appearance and aroma, in order to deliver an accurate and by necessity quite rapid assessment, requires surprisingly intense concentration. It forces you too to ponder on the process and mindset of eating and the realities of living on a restricted diet.

But most of all it’s a privilege and responsibility: not only are we charged with rewarding manufacturers, and, especially in the case of a small producer, possibly changing the course of their business forever, but also the onus is on us to come up with a selection of winners which those on restricted diets may look towards as possible candidate replacement foods on which to subsequently subsist.

I suspect I’m preaching to the knowing, but life is obviously difficult for intolerants and coeliacs. There is much to adjust when first diagnosed. The immediate instinct is to seek out replacement products for familiars, as alike as possible to the just-abandoned ‘allergy unfriendly’ versions previously consumed. These may turn out to be merely ‘stepping stone’ products to establish oneself as painlessly as possible on a gluten-free (or whatever-free) diet, or they may become staples for years to come.

There is a lot of experimentation involved: much purchasing of foods. One of the down-sides to the expanding ‘free from’ world is that the wide choice can sometimes be temporarily paralysing. Which – of dozens – to choose?

While it is generally agreed that quality has vastly improved, there is no accounting for diverse tastebuds. One man’s meat etc. You may hate what you buy first, and you may hate what you buy second and third. Repeat this for several foods and you have spent quite a sum on food you dislike. Enquire of any food sensitive – coeliac especially – and he or she will willingly tell you of trial and error purchases of dozens of breads and pastas before a suitable replacement was identified. Baking mishaps with new flours and flour combinations? The gluten-free amateur chef has experiences in spades.

So anything that can help facilitate or shorten this process – to steer people in a direction towards more palatable, agreeable, successful foods – is really important to them. And that was our job, at least as I saw it.

Coming to decisions is not easy. Michelle has just blogged about one of the dilemmas we all faced: in a nutshell, whether to lean towards rewarding excellence in taste from a purely gustatory perspective – or to give more weight to innovation in imaginatively and skilfully overcoming a ‘free from’ hurdle.

As I wrote in my comments, it is a human dilemma – much more than it is a food/health issue it appears on the surface to be. It is not dissimilar to choosing between people: between the gluten-free gourmand who wants to enjoy a fine guaranteed GF chocolate, and the mother unfortunate enough to have to cater for a family with multiple sensitivities (eg wheat, dairy, egg, and soya), who may more highly prize a safer, and more convenient, but taste-wise inferior, product.

How, with only one set of feet each, do we put ourselves into the many pairs of shoes of the disparate groups of people who rely on ‘free from’?

There is no obvious solution. The passion shown by all the judges proved to me that strong arguments were put forward representing all possible standpoints. While some may argue that we have a greater duty to the most severely at risk – nut allergics and coeliacs – in the inevitable mulling-over of the day after, I can’t help feeling that, most of all, the Free From Food Awards must consider everyone who is, well, ‘free from’ – from peanut anaphylactics to lactose intolerants.

And I think we achieved that.

For more on the Free From Food Awards, see www.freefromfoodawards.co.uk
A shortlist will be announced in March. The winners on the 6th April.

No more digestives for Lancashire coeliacs?

2011-01-31T12:00:00.002Z

Following on from my previous post about restricted coeliac prescriptions in Yorkshire, it seems Lancashire is following suit. News today in The Bolton News says that treat foods are being ‘axed’. Is this part of a larger trend, then? Will we be seeing more PCTs curbing cake mixes and biscuits?

It’s been two months since I uploaded the previous post, and still I can’t make up my mind confidently on the issue. David – a coeliac and GF blogger from Ireland – posted in response last time, pointing out that there are no ‘treat’ prescription products in Ireland, but they do offer breakfast cereals. As he rightly points out, it’s the most important meal of the day – and that goes for coeliacs as well as non-coeliacs.

I’m beginning, I think, to lean towards the view that perhaps it would be better for so-called treat foods to be severely restricted, if not removed altogether – and perhaps replaced by cereals. As I suggested last time, it may undermine the ongoing efforts to have coeliac disease taken seriously. Is the risk worth it for a few digestives?

I suspect now that the ball appears to be rolling – there may be no stopping it. The nation’s purse strings are tightening, after all.

I think we need to be careful, however, to justify this possible move by highlighting examples of excessive weight gain supposedly because of prescription foods. The report in the Bolton News highlights a case of a patient receiving high levels of products, who subsequently gaining a lot of weight, becoming clinically obese.

It’s important to bear in mind that newly-diagnosed coeliacs can tend to put weight on, and this is because their healing guts are absorbing more nutrition and energy.

This, I feel, should not be used as an excuse to ‘punish’ either these individuals or coeliacs in general. Let's face it, they need support and advice. We need, I suspect, research into additional factors which contribute to weight gain in coeliacs – and if prescription treat foods are among them, then it’s certainly time to take action.

More ‘Facts’ from the Daily Mail

2011-01-11T15:37:00.009Z

Ah, another food sensitivity article from a national, this time the Mail. It’s boring and tells us nothing new, but manages to make mistakes while doing so. Spotting the inaccuracies in such stories can feel as challenging as looking for hay in a haystack, but here we go anyway.

“[coeliac disease] … is not a contagious illness but is often genetic. Coeliac disease affects one person in every thousand.”

No, it is always genetic and it affects one in every hundred.

“Unlike classic allergies, if you are allergic to wheat….”

But wheat allergy is a classic allergy…

“The only proper diagnosis for wheat intolerance is a test called a food challenge, carried out in a hospital. The patient is blindfolded and tested for wheat under controlled conditions.”

No, the proper diagnosis for wheat intolerance is achieved through an elimination diet. A food challenge is a gold standard for a food allergy. I’d always understood that food challenges for intolerances were rarely used as they were difficult and time consuming. Any allergists or dietitians reading care to help or enlighten?

Elsewhere, the writer omits to clarify the gluten-in-oats situation and omits blood testing for coeliac disease – an essential first screening.

There are no links to further information or support groups.

I’d really like to know why it’s so hard to get some of this stuff right. 1% of the population has coeliac disease – the Coeliac UK website can confirm that with two clicks. Where does the figure one in a thousand come from?

Food Allergy and Intolerance Week is looming. I expect more of this stuff as the bandwagon press releases start rolling in and journalists who are at best pressed for time and confused and at worst disinterested and lazy respond by churning out filler like this.

ETA: This has been edited on 15th January to correct a previous error.

No more digestives for Yorkshire coeliacs?

2010-11-24T16:28:00.002Z

We tend to get occasional waves of media coverage of food intolerance, food allergies and coeliac disease, usually centred around a celebrity claiming to have lost weight by giving up wheat, or perhaps around an awareness week or campaign.

Not all coverage is accurate, as previous posts on this blog have outlined, but most of it I think is useful – if only to trigger debate and raise wider awareness.

A lot of it, though, covers ground which has been well trodden over the years, so it’s always refreshing to see space given over to an aspect of living with a food sensitivity that gets little coverage.

This report from The York Press is unusual in that it concerns NHS prescriptions for patients with coeliac disease – an aspect of coeliac life rarely given more than a passing mention in general articles on coeliac disease.

In a nutshell, coeliacs are entitled to a certain quantity of core gluten-free food items on prescription through their pharmacist. These include breads, bread / flour / cake mixes, baking aids, crackers, pizza bases, pasta and plain biscuits.

The news that the local PCT is stopping prescribing prescribable ‘treat’ products – ie the cake and biscuit products – is noteworthy. I’ve not come across it before, possibly because it is by nature a local story and I tend only to follow the nationals’ coverage of food sensitivities.

I can’t make up my mind about the rights and wrongs of this.

Some coeliacs have expressed quiet concern to me about so-called treat products being available on prescription, as they feel that prescribable foods should be healthy or staple essentials only, and not foods such as biscuits which healthy-living advice from the Government has suggested we should all limit or cut back on. They feel it undermines the ‘cause’ in a sense: “You get biscuits from the doctor? Blimey – your disease can’t be that bad!”

On the other hand, having spoken to many coeliacs over the years, I have some degree of understanding of how tough it is to manage without many of the staple foods non-coeliacs take for granted, and how useful prescription foods are to coeliacs. Yes, food should be healthy – and prescription pastas and breads form an important part of the diet. But what about psychological health? We know that depression can be a huge problem for those with coeliac disease – are we to deny them the odd treat or two on the state?

It’s an argument which will run. I’m glad the subject has made the pages of a local – though suspect that most ordinary readers who don’t understand coeliac disease or what coeliacs have to live with may not be sympathetic. Would love to read your views.

Are you interested in taking part in a research project about coeliac disease?

2010-10-23T11:10:00.001+01:00

This is a request from Cardiff-based researcher Helen Boyce:

Are you interested in taking part in a research project about coeliac disease?

The research aims to find out whether dietitians gain knowledge of what it is like to live with coeliac disease, through their interaction with coeliac patients. The research started as a dissertation for my Masters degree at Cardiff University, but I am now conducting further research in order to get the results published.

Participating in the research involves answering a few questions via email about what it is like to live with coeliac disease and providing some basic demographic data.

You can participate in this research if you have coeliac disease, are over the age of 16 years old, and have been diagnosed by endoscopy (tube passed down the throat into the stomach and intestine) at least one year ago.

If you meet the criteria and would like to take part in the research, or would like more information, please reply to: BoyceHL@Cardiff.ac.uk

Warburtons GF / Coeliac book

2010-10-20T20:09:00.002+01:00

Quick update on the announcement last week from Warburton’s that they’ll be entering the free from market next year, with a gluten-free range.

I’ve been in touch with the publicists for Warburton’s today and they’ve told me that “The new products will be produced at a dedicated site recently acquired by the company in Newburn” – but they couldn’t say more than that, or tell me anything about the products planned.

They promised to keep me posted – so I’ll add to this post (or repost) as soon as I have further news – and will tweet it from my Twitter account too.

In other news – still busy working on my new coeliac book, and still looking for input too. If you’re interested in sharing your views on what you’d like to see in a new guide to coeliac disease, out next year, then see this post and feel free to comment.

Allergy, Intolerance, Testing... and the Express

2010-10-13T10:42:00.003+01:00

A quick post as I’m up to my neck writing my book Coeliac Disease: What you need to know, but yesterday’s story here in the Express about unorthodox food hypersensitivity tests frustrated me a bit.

Once again it’s the unsatisfactory tactic of using an inappropriate patient as a case study. In previous examples, such as the example in the Times earlier this year which I wrote about here, we’ve seen someone without any apparent health problems taking the tests. This time, it’s a food allergic child being employed to discredit already discredited food intolerance tests. It’s a flawed premise.

These tests are nonsense, of course – that much is known. Yes, it’s important this message gets out there – though the ongoing availability of these tests and the fact their practitioners remain in business would suggest it’s doing little good.

It may be doing no good because the public is confused – mostly about the difference between allergy and intolerance, I’d hazard. I don’t blame them for this – we can’t expect them to know. But I do think the core differences could be explained simply and basically in a few words. Roughly:

* a food allergy is usually rapid, sometimes alarming, very occasionally life-threatening, and is characterised by symptoms such as rashes, watery eyes/nose, wheezing, swelling etc
* a food intolerance is slower, rarely serious, and usually causes gut-based symptoms.

Articles like this fail to adequately draw the distinction between the two, and do little in my view to clarify it in the minds of readers. I don’t necessarily put the blame on the journalist Jane Symons for this: I’ve no doubt at all she want to see sham tests exposed and dissed as much as I do. But when practitioners of these tests talk of ‘allergy’ what they really mean is ‘delayed allergy’ – their term for ‘intolerance’, essentially. This does need to be understood and explained.

Further, when the title of an article is “Allergy Tests: What works” then I feel a major national newspaper has a duty to deliver on that promise fully and communicate clearly what does work in allergy testing – that is, orthodox (IgE) blood tests, skin pricks, and possibly challenge testing – and what does work in intolerance testing – that is an elimination and reintroduction diet under dietitian’s supervision, or breath tests for lactose intolerance, or blood tests and biopsy for coeliac disease (auto-immune gluten intolerance).

And the evidence for alternatives is absent. It’s that simple really. And you don’t really need a poor little kid with a nut allergy to make that point.

The Lottery of Food Sensitivity Testing

2010-10-07T11:17:00.003+01:00

Following on from my post this week, Food exclusion: a dangerous game, about why experimental food exclusion or elimination could cause you unwanted problems, even if it does make you feel better, I’d like to expand a little on the issue of controversial testing methods for food sensitivities.

There are a lot of them out there – hair analysts, kinesiologists, Vega practitioners and so on – and none has been validated scientifically. One or two others may be less suspect and more interesting and worth further research but the majority of specialists say the evidence is not yet there even for these.

This is an extract from one of my books, and it refers to alternative tests and diagnoses:

“Results follow a strikingly similar pattern. One or both of wheat or dairy are commonly cited as culprits, and to these will be added other supposed allergens, often including obscure foods (broad beans appear a favourite), in order to the lend the whole operation a convincing air of precision. In fact, multiple and unrelated food allergies are comparatively rare, and the restricted diets demanded by the results of such tests can put you at risk of under-nutrition.”

“Oh, what a clever test!” you may think. “It even detected my eel / kiwi / macadamia nut intolerance!”

I think it pays to be more sceptical than this.

In the course of my work I’ve interviewed lots of experts – dietitians, gastroenterologists, medics – and many have related tales of women (it’s usually women – typically late 20s to early 40s) getting into a dreadful mess with their dietary intake: excluding foods which are probably quite safe, restricting their nutrition, possibly suffering from anaemia and other consequences as a result, attributing this ill-health to further food sensitivities, then further restricting their food intake – until they’re eating a hopelessly inadequate diet and have spiralled into a state of conviction that they should avoid dozens of foods. Dietitians are often charged with unpicking this tragedy, trying to rebuild women’s shattered confidence in food, which can be a struggle when individuals have been living on restricted diets for some time and their bodies can no longer properly cope with an ordinary diet.

What might be better instead of copying the latest celebrity or listening to a friend who has lost weight by excluding gluten or acting on the results of a toenail clipping analysis:

a/ ask yourself whether you’re eating healthily – if you’re eating sweets and junk, try a more wholesome diet – you’d be surprised how much it can help;
b/ if that doesn’t help, see a doctor; have a chat with him or her; your problem may not even be food related;
c/ if it is possibly food-related, it will be probably worth having coeliac disease and lactose intolerance excluded as possibilities (there are good tests for both);
d/ if you must pay for something – pay for a dietitian specialising in food reactions, and under their guidance (possibly) try a proper, supervised exclusion diet, which can uncover a sensitivity.

Remember, choosing your lottery numbers the same way last week’s winner chose his will not necessarily work for you – and neither is it true to say that the winner has found a way to identify winning lottery numbers.

Equally, undertaking a test or consultation which your friend undertook and found productive will not necessarily work for you – and neither is it true to say that your friend or his alternative therapist has found a way to identify problematic food triggers.

It’s really that simple.

Food exclusion: a dangerous game

2010-10-04T10:06:00.002+01:00

I keep coming across people – in person, on chat forums, word-of-mouth friends of friends – who are excluding foods from their diets experimentally.

Some seem to be just having a go to see whether they feel better, perhaps because they’ve read an article.

Others have visited medically untrained complementary therapists or taken unvalidated food intolerance tests, and are acting upon their recommendations. Perhaps they have friends who say ‘it worked for me’ – as if the testimony of a pal somehow overrides the considered scientific analysis of the international medical community.

And so they start to eliminate. They’re quite clued up. Wheat/gluten and dairy are the big two. They read labels, know rye and barley have gluten too, realise that ‘lactose’ denotes dairy, understand that both can be hidden in surprising places, like stock cubes, chewing gum, medicines, soy sauce, charcuterie, as well as obvious ones, like cakes, biscuits.

And what happens? They often feel better. Their conclusion? Typically: “I was feeling ill when I was eating gluten and/or dairy. I feel fine when I’m not eating gluten and/or dairy. Therefore I am intolerant to gluten and/or dairy.”

Possibly, but not necessarily – and, arguably, probably not. Cut out gluten and dairy and you’re constrained to cut out all the junk food in which these two foods happen to be found – doughnuts, hot dogs, burgers, the rest. You’re also compelled to consume, inevitably, more vegetables, and alternative treats to fill the gap – fruits, dried fruit, nuts, dark chocolate. Often, it is the inclusion of these wholesome foods – not the exclusion of the unhealthy ones – which is the main reason for improved health. Your diet just got better. A change is good as a rest. But how many draw those conclusions? Very few, if any.

You may be thinking – So what? As long as I feel better, does it matter?

It matters because you could be unnecessarily avoiding healthy gluten-containing and dairy foods – pumpernickel bread, pure wholewheat cereal, natural yoghurts, for instance – which contribute important nutrients.

It also matters because you could be failing to properly uncover a genuine problem with food. One such could be coeliac disease (CD), an illness about which I’m currently writing a new book (Coeliac Disease: What You Need to Know). CD is a serious autoimmune disorder, triggered by gluten, which effects 1% of us, and is largely undiagnosed among the population. Alternative tests cannot diagnose CD. We have proper tests which can. Trouble is, if you stop eating gluten before you’re tested with these proper tests – then the proper tests may not work.

It matters furthermore because you could be affecting the way your digestive system works. Stop eating dairy and your body begins to scale down its production of lactase – an enzyme needed to digest lactose (milk sugar). Try to eat dairy again after some months’ unnecessary avoidance and you may get tummy upsets – typical symptoms of lactose intolerance, caused by reduced lactase levels. This may convince you that the original test was right – you *were* dairy intolerant after all – and that you should avoid it. Again, possible – but probably more likely is that you never had a problem with it to start with, and if you started to eat it again gradually, you could train your body to retolerate it. Many people don’t do that, dietitians have told me, and osteoporosis in later life is their occasional reward.

Just three examples of why casual, “oh it’s worth a go” food exclusion may not be worth a go at all.

Calling coeliacs… what would you like in a book on CD?

2010-09-13T10:37:00.003+01:00

I am writing a book about coeliac disease. It is aimed at several groups of people:

a/ those who suspect they may have the condition and want to find out more about it;
b/ adults or parents of children who have recently been diagnosed with the disease, and need a supportive, practical guide and reference book;
c/ long established coeliac patients and their families, who are interested in learning more about the more recent developments in coeliac disease, and how these may effect them.

It will be published by Sheldon Press (the publisher of two of my previous books on food intolerance and food allergy) in around February 2011. Before that, I’m looking for help from coeliacs...

What would you like to read in a book about coeliac disease? Which questions would you like answered? What useful resources would you like included? Would you like more information on diet, nutrition, health issues, emotional health, children’s health, treatments, or something else?

Also: what don’t you want to read about? Complicated descriptions of villi in the bowel eroding? Detailed medical blood testing? Is there anything in coeliac world which goes over your head and you feel you don’t need to know?

Obviously, I’d like to produce a book coeliacs would like to read and which can help them. Over the coming month, I’ll be interviewing coeliacs, gastros and other coeliac experts who’ve volunteered to give up their time to chat to me, but I’d like to open up the question to as many coeliacs out there as possible – particularly from UK and Ireland, at whom the book is primarily aimed - as input and feedback is something of which we health writers receive so little.

Would love to hear your thoughts through the comment function. And if you have any questions for me (or indeed the experts) let me know too. If you prefer to contact me privately, try emailing me through my personal website. Thanks!

Living with Food Allergies (Indian Edition)

2010-05-20T20:59:00.007+01:00

I’m delighted to announce the release of my new book, Living with Food Allergies, published by B Jain Publishers, in India.

It’s a practical and informative guide to managing and coping with food allergies – as either a sufferer or as a parent – and is aimed at the Indian, Asian and African markets, where food allergies are an emerging problem.

Here is some blurb:

Food allergies are on the rise. In the last ten to fifteen years, there has been approximately a five fold increase in adverse reactions to foods such as nuts, fish, cereals, milk, eggs and – increasingly – raw fruits and vegetables. Estimates suggest up to 3% of adults and up to 6% of children now have food allergies.

Living with Food Allergies aims to support people with food allergies and parents of children with food allergies, equipping them to cope with everything from the day-to-day practicalities of dealing with the condition, to the longer-term implications of allergic illness triggered by food.

Topics covered include:

• What food allergies are and why they occur
• Reaction management and medication
• Food safety, diet and nutrition
• Practical issues – home life, employment, education and travel
• Coping emotionally and psychologically
• Allergy prevention and long-term health
• Food allergies in infants and children
• Tests, diagnoses and treatments
• Non-allergic food intolerances and coeliac disease

There is also a comprehensive resource section, filled with useful websites, support organisations, producers, allergy bodies and much more. Food allergy can cause great misery, but the good news is that informed and careful self-management can keep you or your child in optimal mental and physical shape.

‘Great practical advice which shows real understanding, especially of the emotional aspects of coping with allergies, which are often overlooked. If you have an allergy, or know someone who has, Living with Food Allergies should be your bible.’
Faye Rowe, Editor, Allergy Magazine

‘… offers the reader a chance to finally get to grips with food allergies, from minor symptoms to full blown reactions… Plenty of practical advice, emotional support and nutritional advice… this is an invaluable read for anyone.’
Natural Products Magazine

‘A very informative and well researched work, I would recommend it as a must read for anyone who has a child with a food allergy’
Dr Anita Sikand Bakshi, Consultant Pediatric Intensivist, Apollo Hospitals, New Delhi

Living with Food Allergies (B Jain Publishers, Rs 99.00 / US$6.95 / GB£3.95)

To buy the book from my publishers, click here

'Gluten is Good'

2010-05-19T13:21:00.008+01:00

I suppose we should perhaps be grateful that the Daily Mail didn’t claim that bread causes or cures cancer yesterday, but the news here that giving up bread ‘can make you fat’ and that ‘gluten is good for you’ nevertheless deserves a response.

The author Peta Bee is a terrific health journalist but this piece left me a bit unsatisfied.

Let’s start with this:

Coeliac disease is diagnosed by taking a biopsy of the intestine or via blood tests. Sufferers must be strict in avoiding gluten.

But this is different from so-called ‘gluten intolerance’, which is linked to IBS, headaches and mood swings.

CD is actually diagnosed by blood tests and then a biopsy, but no matter. The point here is that the writer is making a distinction between coeliac disease and gluten intolerance. But later:

Gluten intolerance was one of the ‘make-believe allergies’ highlighted by Portsmouth University researchers in January, in a study that showed a fifth of adults wrongly believe they have a problem with certain foods.

Bee is referring to the Wheat Hypersensitivity Report, which I wrote a lot about a few months ago. So gluten intolerance is make believe, is it? Not according to a BDA expert:

‘Gluten intolerance certainly exists,’ says Tanya Thomas, a dietitian and spokesperson for the British Dietetic association.

‘But we know that the amount of people who truly have coeliac-like symptoms is a lot less than the number of people who are cutting it out of their diets. A real intolerance to gluten can be diagnosed easily with the tests for coeliac disease ...’

By ‘A real intolerance to gluten’ does the speaker mean coeliac disease or gluten intolerance? It isn’t clear. Only coeliac disease can be diagnosed ‘with the tests for coeliac disease’, and if we’re talking about a non-coeliac gluten intolerance, then the only means of diagnosing that is via an elimination diet.

As for the argument that giving up bread can make you fat, this seems flawed to me. It’s not what you omit that makes you fat – it’s what you eat. And if you rely too much on processed foods – whether ‘free from’ or not – you’re likely to take in more calories than you need. If you do need to cut bread out for medical reasons, the key is to keep your diet largely wholesome and to continue cooking gluten-free meals from scratch.

Another extract:

But in the long-term, switching to a gluten-free diet, which involves replacing gluten products with those using flours made from rice, cornmeal and buckwheat, can lead to weight gain. It is not unusual to put on two to three stone.

This is true, but deserves explaining. Undiagnosed coeliac patients have gut damage and suffer from poor food absorption because of it. When diagnosed, and they eliminate gluten, the gut heals and absorption of food improves – as does calorific uptake as a consequence. This is why coeliac patients giving up gluten can put on weight. And I doubt the added difficulty of having to overhaul their diets helps either. Learning to exclude gluten strictly can be very stressful, and you can hardly blame some newly diagnosed patients for possibly comfort eating of gluten-free treats. This doesn't mean someone without CD giving up bread will suffer the same consequences...

As for gluten being good for you - which the title-writers at the Mail have apparently fabricated out of nothing – not especially. It’s just an averagely nutritious protein, as far as I understand it. Humans can’t digest it very well, but in people without coeliac disease the undigested parts just pass through the system and end up you know where. It’s possible that some people are more sensitive to this – wheat-related IBS, and so on – but generally most of us are fine with it.

So, no, giving up bread can’t make you fat per se, and gluten is fairly average for you. But that’s not quite as eye-catching a title is it?

"It is unclear..."

2010-03-22T13:43:00.009Z

I want to reproduce a summary section from the Wheat Hypersensitivity Report here, in full:

What are the gaps in our knowledge?
It is clear from a recent survey that a number of people consider themselves to be intolerant or allergic to wheat and subsequently avoid wheat or wheat containing foods. Research suggests that wheat allergy or intolerance may not be that prevalent, with slightly more people having coeliac disease. However, more research is needed.
However, the above data clearly indicates the following gaps in our knowledge:

• It is unclear what the general public understand about food allergy and food intolerance.

• It is unclear how many adults have a wheat allergy or intolerance, although we do know that:
o Only 1.4‐1.8% of adults have an allergy or intolerance to any food.
o Wheat allergy is less prevalent than allergies to peanuts, tree nuts, egg and milk.
o It is however, unclear in particular, how many adults have food or wheat intolerances.

• It is unclear what effect the avoidance of wheat, either supervised or unsupervised, has on the nutritional content of the diet and the quality of life of the person.

• It is unclear how many of those diagnosed with wheat allergy or intolerance may outgrow their allergy/intolerance.

Not a lot is clear, then, according to the researchers. In fact, only two things.

The first is that wheat allergy is less prevalent than allergies to nuts, egg and milk. This is correct. Wheat rarely causes immediate, IgE-mediated food allergies which are characterised by rapid inappropriate reactions such as hives, wheezing and worse. This is hardly a revelation.

And the second thing that is clear is that 1.4-1.8% have an allergy or intolerance to any food.

Or is it? Those figures are almost 20 years old. The authors of the report from which these figures are taken said something telling in 1994:

“Our results give prevalence of intolerance for eight test foods studied of 1.4% with stringent criteria and 1.8% with less stringent criteria. These eight foods accounted for 49.3% of reported reactions but we also identified other foods causing symptoms. Our prevalences are, therefore, an underestimate.”

So, they were considered an underestimate then, and surely are now. Why? Because:

a/ coeliac disease, an autoimmune disease caused by a specific form of gluten intolerance, twenty years ago was thought to affect around 1 in 1,000 or fewer. We now know it’s 1 in 100.
b/ oral allergy syndrome (OAS), virtually unheard of twenty years ago, may now affect 3-5% of the population.
c/ lactose intolerance affects 70% of the world’s population, but in the UK, various estimates range from 3% to 15%.

And then there are the regularly reported rises to childhood nut (and other) allergies, for instance, over recent years to take into account too.

So how many people have one or more food hypersensitivity in 2010? It is difficult to come to a single reliable figure, for a number of reasons. For instance, some sensitivities may coexist (coeliac disease patients are often lactose intolerant, for example), but given the above I doubt whether it can possibly be less than 5%.

You may be interested to know where OAS’s 3-5% prevalence comes from, by the way. It’s described as a ‘likely’ figure by OAS researcher and dietitian Isabel Skypala in a superb book, called Food Hypersensitivity, published last year, which I reviewed here. You will notice Skypala’s co-editor is Carina Venter. It is a brilliantly referenced book and there are many studies quoted – well worth investigating, and I admire the book hugely.

I’ve asked to speak with Carina Venter via the press office at the University of Portsmouth a few times over the last weeks, and it hasn’t happened yet. I’ve also offered her a response on this blog – and she of course is free to comment like anyone else. What I most want to ask her is why she used 1994 data in the Wheat Hypersensitivity Report on which to base her key finding – and seemed to exclude the many more recent figures quoted in Food Hypersensitivity? Why maintain 1.4-1.8% of the population has food hypersensitivity when the combined evidence collated in the book suggests it may well now be considerably higher?

I do hope for a response and clarification.

So. Where does this leave us?

In summary, we have a report, funded by a body representing the interests of the flour industry, using 1994 data of debatable current relevance to support the notion that food hypersensitivity – and wheat hypersensitivity in particular – is largely a British delusion. A strong PR campaign and a seemingly unquestioning media ensures publicity in several major newspapers and elsewhere, as reported in my previous posts. Some of this coverage effectively portrayed people as hypochondriacs, which surely only serves to drive them towards discredited and expensive alternative tests (e.g. Vega) and away from their GPs – especially, I suspect, if they feel they may run the risk of encountering the attitudes expressed such as those of the Telegraph’s Dr Max Pemberton here.

Bit rubbish, isn’t it?

The Wrong Stuff

2010-03-02T12:36:00.004Z

Excellent and promising news that a major peanut desensitisation study is being launched after a successful pilot in Cambridge. Here’s a good report. It has generally been well covered.

Excuse the pun, but in a nutshell, the scientific process involves inducing tolerance in peanut allergic individuals by exposing the immune system to minute but gradually increasing doses of peanut protein, and finally establishing a ‘maintenance’ dose of several peanuts.

This morning on The Wright Stuff, Supernanny Jo Frost was talking about her severe peanut allergy and how it affects her working life. Matthew Wright mentioned the peanut desensitisation study, and described it as being “rather like homeopathy”.

No, Mr Wright, it is nothing like homeopathy.

Homeopathic remedies contain no trace – not a molecule or atom – of the substance on the label. They are sugar. Or they are water.

The peanut vaccines – which is what they effectively are – do. If they didn’t they wouldn’t work.

It is dangerous and irresponsible and ignorant to liken homeopathy to a vaccine. It encourages the anti-MMR lobby. It encourages people to take homeopathic malarial tablets which are known to be ineffective. It encourages homeopaths to spout nonsense about HIV. Simon Singh summarises the important points here.

Homeopathy is in the news a lot at present. Homeopaths are up in arms that a Parliamentary Science & Technology Committee has recommended the NHS cease funding for homeopathy, on the basis that there is now a body of evidence to suggest it is no better than a placebo treatment.

It is important that every bit of nonsense spoken about homeopathy is corrected. There are others, like the people behind The 10:23 Campaign, doing sterling work in this regard.

Matthew Wright’s silly little comment is probably too trivial to be picked up by the big guys, so this is my little contribution to the cause…

Times gets it right on food allergy tests… mostly

2010-02-25T14:19:00.018Z

Testing for food hypersensitivities is a confusing business. Here’s a summary of what the medical profession can do:

1. Coeliac disease can be tested for effectively through a number of blood tests and a biopsy.
2. Food allergies can be diagnosed clinically using a combination of several of the following: blood testing, skin prick testing, challenge testing and examining clinical histories.
3. Of the food intolerances, only lactose intolerance can be tested for – by using the hydrogen breath test.

Set those three aside, and we’re entering controversial territory. There are no tests for other possible intolerances which are accepted by orthodox medicine. The only way to reliably diagnose them is through an elimination and reintroduction diet, under the close supervision of a specialist dietitian.

As most people are aware, there are other tests available privately whose manufacturers maintain can help identify intolerances, and there are many alternative therapists who claim to be able to diagnose food sensitivities using their unproven techniques.

This Times story this week does a reasonable job of warning the reader about many of them.

My key quibble is that the article, like many before it, uses the slightly unsatisfactory tactic of recruiting a non-food-allergic journalist to discredit procedures which claim to test for food intolerances and not classical food allergies. And besides, we all know one example isn’t enough to prove or disprove – even the widely accepted food sensitivity tests I mentioned above can produce false positives too.

But the key matter is whether these tests work or not. Is there a body of evidence supporting them, based on randomised double-blind placebo controlled trials, published in peer-reviewed medical journals?

No.

The exception is IgG testing, for which there is one trial, which was mildly positive. IgG testing is offered by two organisations – YorkTest and Cambridge Nutritional Sciences. Despite the endorsement of Allergy UK and, in the former case at least, of some well-known individuals, these tests are not considered suitable for diagnosing food intolerances by most independent experts working in the field, who believe the theory on which they are based – that raised IgG antibodies indicate possible food intolerances – is at present unproven. Vigorous (and ongoing) PR has seen both get some positive coverage (including, I’m afraid, in the past, from me) and some high-profile “it worked for me’s”, but the case for IgG testing has been dealt a severe blow by people brighter than yours truly elsewhere on the web, and I certainly can't improve on it here. If you’re interested, this is a fairly good place to start, but I'll post up others when I find them.

As far as Mr Joe Public is concerned, I feel he needs to ask himself who to believe.

Does he believe people such as kinesiologists, most of whom have no medical training, and who think they can diagnose food sensitivities by placing foods on people’s bellies and checking their physical strengths?

Does he believe people who are trying to sell him very expensive tests?

Or does he believe independent medical professionals with no vested interests?

I hope it’s the last of the three. Because the people who really matter – that’s allergists, immunologists, gastroenterologists and dietitians – with very few exceptions do not accept these tests. And although sometimes these experts may be unsympathetic to people experiencing chronic problems – as my last post concerning Dr Max Pemberton’s article in the Telegraph exemplified – it doesn’t make the alternative any wiser an option, at present.

Think you’re food sensitive? You’re probably deluded, says Telegraph Doc

2010-02-18T22:10:00.005Z

In posts earlier this week, I questioned the validity of the Flour Advisory Bureau’s Wheat Hypersensitivity Report, written by a team at the University of Portsmouth, and criticised the media’s reporting of it.

The most dislikeable follow-up piece of writing I read was this, by Dr Max Pemberton in the Telegraph, in which he can’t even seem to decide whether food allergy and food intolerance are the same, or different, or whether one forms a subset of the other. Still, why let silly little medical definitions get in the way of a good moan about the nation’s hypochondriacs?

He writes:
“Now research conducted by Portsmouth University has shown that of those people claiming to have an allergy or intolerance, only 2 per cent actually did.”

This is quite wrong. The ‘research’ he is referring to here is research you or I can easily do. It involves reading the abstract of a paper entitled ‘A Population Study of Food Intolerance’, published in the Lancet in 1994, and identifying a figure. Click here to do so.

Well done! You just did some ‘research’. As a bona fide researcher, you’ll have seen that that 2 per cent (actually 1.4 to 1.8, but reasonably rounded up by Portsmouth) refers to the whole population, not ‘those people claiming to have an allergy or intolerance’. I suspect the lack of clarity on the matter in Rebecca Smith’s Telegraph piece here, two weeks earlier, led to this error.

Moving on, and Pemberton refers to ‘the false belief that something is wrong with you’ – a ‘mass delusion’. (He’s talking about people who feel ill, in case you’re wondering.) He asks:

“Why do people restrict their intake unnecessarily by falsely claiming to have a medical condition?”

Falsely claiming? Do you mean lying, Dr Pemberton? I think he probably does. Even an acquaintance isn’t spared:

“Only last week, a friend with recently self-diagnosed lactose intolerance came round for a cup of tea. “Do you have any soya milk?” she asked as the kettle boiled. I confessed I hadn’t and felt awful. It was then that I realised she was on her third chocolate biscuit. “Oh, milk’s OK in chocolate biscuits,” she said hastily. How convenient, I thought.”

Many people with lactose intolerance can easily tolerate small amounts, and when the milk is processed, or consumed bound within another food, it is typically much more tolerable. All lactose intolerants know that fresh milk is the most likely to trigger symptoms, and hence are far more wary of it.

Still, who cares if they get the trots. It’s only deluded people who are labouring under false beliefs, after all.

How the papers got it wrong on food allergy and intolerance. Again

2010-02-16T12:36:00.007Z

My first post on February 14th explained how a press release from the University of Portsmouth about their Wheat Hypersensitivity Report, which was commissioned by the Flour Advisory Bureau, a body representing the British flour and milling industry, was faithfully translated into news stories in several of the nationals – despite the fact that the Report’s key claim relied on data almost twenty years old and – as I hope to show in future posts – of questionable current relevance.

Rebecca Smith, medical editor of the Telegraph, we start with your news story.

“One in five adults think they are allergic to food, with most stating a wheat intolerance as the problem.”

“However, when they are actually tested just two per cent have a genuine allergy or intolerance, a report from the University of Portsmouth said.”

Who is ‘they’ in this second line? All adults? Or the one in five adults who think they are allergic? The reader might assume the latter, but it’s actually the former. According to the Lancet prevalence study of 1994, 20% of the population think they have a food allergy or intolerance, and yet only 2% of the population actually do.

I’ll come back to an unpleasant consequence of this lack of clarity in a future post.

It’s also worth noting that in the same 1994 study, the food which the most people claimed caused symptoms was… chocolate. Wheat was not in the top ten, and sat behind the likes of citrus fruit and tomatoes. Just 0.9% reported a sensitivity to it.

Next up, the Mail’s piece, by Fiona Macrae. At least their headline represents the figures presented to them correctly – pity about the ‘all in the mind’ dramatics.

Those inverted commas puzzle me. Who is saying 90% of food allergies ‘are all in the mind’? Nobody in the article (or press release) is credited with these words.

Are they all in the mind? Consider this: if 20% of people have a sore throat and think they have influenza but when tested only 10% of those people really do, would the remaining 90% with merely a common cold have it ‘all in the mind’?

We cannot be surprised that the general public are unable to differentiate between food allergy, food intolerance and food hypersensitivity – not least because experts and medical bodies sometimes disagree over their definitions and classification too. People don’t understand immunology or gastroenterology. They conflate indigestion and maldigestion. They speculate about belly troubles. They call their guts their stomachs.

We can’t punish them because of this. Some people feel they react adversely to one or more foods. Some will be wrong, some will be right. Some call it allergy, some intolerance, some “it’s sort of an allergy, but maybe just a bit of intolerance or tummy trouble”.

What they’re telling you is that they don’t feel well. Telling them it’s ‘all in the mind’ is damaging, is my view, and can only serve to deter people with possibly embarrassing – and potentially serious – bowel symptoms, for instance, from seeing their doctors.

But perhaps I’m wrong and it in fact makes them get a bloody grip.

Old news is new news in food allergy and intolerance

2010-02-14T15:22:00.006Z

21st January 2010 saw a press release fall into my in-tray from the University of Portsmouth’s press department.

It opened:
"Too many people are self-diagnosing food allergies and could be restricting their diet unnecessarily, according to a new report by the University of Portsmouth and commissioned by the Flour Advisory Bureau."

It went on:
"Research shows that up to 20% of adults think they suffer from a food allergy or food intolerance. However evidence suggests that the real prevalence… is less than 2%."

The Wheat Hypersensitivity Report, as it is called, is authored by Dr Heather Mackenzie and Dr Carina Venter from the School of Health Sciences, Portsmouth.

Here is Dr Mackenzie:
“There is a clear discrepancy between the number of people who report that they have food allergy or intolerance and the numbers whose food allergy/intolerance can be confirmed by a medical diagnosis.”

That same day, the Daily Telegraph ran with it.

The day after, so did the Daily Mail, with a headline clearly derived from the 20% / 2% figures.

And the Express too.

You’d be forgiven, as a lay reader of any of the pieces – or many similar reports you can find online – for assuming the research fairly new.

The research is not new. It was published in 1994, in the Lancet. There’s no mention of this in the papers or indeed in the press release. When I initially queried the 20% ‘think they are’ / 2% ‘really are’ figures, one of the many PRs involved in promoting the Report freely informed me of its origin. You can find it in the list of references in the full Wheat Hypersensitivity Report.

All this raises a lot of questions to my mind.

Why do the University of Portsmouth and the Flour Advisory Bureau consider data which is pushing twenty years of age relevant and worthy of news? Why did the papers pick this ‘story’ up and run with it so uncritically and apparently unquestioningly? Is 18% of the public really guilty of food allergy and intolerance ‘delusion’? Is there a culture of food hypersensitivity denialism in medicine?

There are many others. Over the coming days and weeks I will try to answer them using the evidence we have, and also examine the follow-up pieces printed in the papers last week, and which will doubtless carry on making occasional appearances for some time to come.

I can’t promise to have all the answers, or to always get it right. I’ll welcome ideas, criticism and debate – and if you hear of any news stories concerning food allergy, food intolerance or coeliac disease, in print or other media, please let me know.