Saturday, 9 November 2013

Gluten allergy: a question of semantics

“’gluten allergy’ … really doesn’t exist. It’s not really a recognized allergy. Wheat is a recognized allergy – but a lot of people will misinterpret that as gluten.”

So says Dr David Stukus, as reported in a Today.com article on allergy myths.

Gluten is a mix of proteins. Those proteins are gliadins and glutenins. Allergy to gliadins – and this has zero to do with coeliac – are recognised. For instance, this study on a rare but frightening condition called wheat-dependeant exercise-induced anaphylaxis (WDEIA – whereby eating wheat, followed by exercise, brings on a violent allergic reaction), clearly identifies the cause as a gliadin and advises a gluten-free diet (by default a gliadin-free diet).

Is this a gliadin allergy, wheat allergy or gluten allergy? Is it all three? Does it matter? It seems at least one allergist thinks so, and while the nerdy part of me would like to have this matter sorted once and for all too, and for us all to stick rigidly to watertight terminology, I doubt it ever well be. The naming of food hypersensitivities – food intolerances, allergies, coeliac disease, food aversions and all – is confusing, not always agreed upon by specialists, and poorly understood by the public. We can’t win this.

I tweeted Dr Stukus, confused about his claim gluten allergy didn’t exist. He responded swifly and politely.

“Likelihood of IgE mediated to 'gluten' by itself unusual,” he wrote. “It’s really about semantics ... components of gluten associated with IgE (gliadin), but not much literature re: gluten IgE … wheat allergy does not necessarily = allergy to all gluten.”

I agree: wheat allergy does not necessarily equate to allergy to all of gluten. But that’s different to saying ‘gluten allergy doesn’t exist’. I think I get what he was trying to say: that you’re highly unlikely to be allergic to all gluten proteins. But here’s the thing: you can be allergic to one or more.

So it’s semantics – and a point of pedantry. It’s not that ‘gluten allergy’ doesn’t exist, it’s just that ‘gluten allergy’ may not be the most ideal, medically accurate thing to call an allergy to one or more wheat gluten proteins. I like precision, but my colleague Michelle at FoodsMatter feels allergists should ‘lighten up’ about terminology: the average Jo uses the word ‘allergy’ to mean any ‘inappropriate response’, and that we should let them be, whether they have a genuine ‘allergy’, IgE-mediated and all, or not. Hers is a strong argument too.

Hello, media hounds
Some sections of the media only come sniffing around our collective ‘free from’ backsides when they sense something populist, controversial or with inflammatory potential – and by God did we feel their wet noses on our rear ends pretty damn quick with this one.

The preferred angle is a celebrity on a gluten-free diet who has lost weight, of course. But if that one’s been done to buggery lately, or no celebrity is presently available with a book / some perfume / new tits to promote, all is not lost, for the default fall-back is any hook which demonstrates that the free-from community is predominantly a / deluded, b / attention-seeking, c / both. Phantom ‘gluten allergy’ lends itself nicely to the reserve option.

For the Huffington Post – whose quality of coverage of food sensitivities is fucking diabolical – Dr Stukus’ claim is tantamount to your symptoms being “all in your head” (an odious claim when made negatively like this; it’s a future blog).

And witness this from – who else – the Mail. The title says it all. “Got a gluten allergy?” Then “You’re kidding yourself.” I’ll leave you to enjoy the comments.

So what started as an allergist pointing out that, semantically speaking, ‘gluten allergy’ isn’t an accepted term, has turned into headlines claiming, in effect, ‘people claiming to react to gluten are either wrong or making it up or both’.

Way to go!

Why it matters
Some will read, perhaps not beyond the screamer, and think ‘fussy eaters’, ‘pains in the arse’, ‘thinks it’s trendy’, ‘want to lose weight’, ‘imagining things’. It takes just one grumpy restaurant worker to read ‘gluten allergy doesn’t exist’, to then meet one coeliac who (forgivably) uses the expression ‘I have a serious gluten allergy’ in a restaurant, to then put that coeliac at risk.

Some people may errantly interpret ‘wheat allergy’ as ‘gluten allergy’, but more people will interpret ‘gluten allergy doesn’t exist’ as ‘gluten free is bollocks’, and it should be obvious to all which is the most damaging.

It’s been a rubbish week for ‘free from’ in the media, what with the Gluten Free Scam Telegraph article that I blogged on on a few days ago. So bad, that the brilliant blogger, Gluten Dude, in a post which also touches upon the damage from this story, as well as other incidents on US TV, has demanded the media to ‘Shut the Hell Up’, about gluten.

But ‘they’ won’t. And I use inverteds around they because the media isn’t ‘them’. The media is them and us. If you tweet, you publish, and you are the media. If you Facebook, ditto. If you are a blogger writing about food sensitivies then you absolutely are media. So keep writing about gluten, allergies, and anything else. Be a gluten – or peanut, or dairy, or nightshade – nerd. Get it right, get it wrong, live and learn. You’re working for the free from community, not sneering at them – like a disturbingly increasing number of others in the media seem to be.

7 comments:

  1. Well said Alex!

    And, for the record, I do think semantics and accuracy are important - but among the professionals only. It is important, if complex, for them to get the terminology sorted out but what I object to is them expecting the poor non medical sensitivity sufferer to have got it sorted out as well.

    We do not expect the ordinary purchaser of shares to understand the intricacies of the hedge fund market so why should we expect the ordinary sufferer from a food sensitivity to understand the intricacies of allergy/intolerance?

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    1. Thanks, Michelle. I think Dr Stukus' frustration came partly from having seen a lot of misinformation on the internet, subsequently taken on board by his patients - and of course, those new to the subject who use Dr Google are going to get very frustrated if they come across contradictory information. But that doesn't change the fact that even if all information online was accurate and perfect, people would still get confused - and still conflate allergy, intolerance and sensitivity ...

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  2. I don't know what I'm allergic to, specifically. I've had specific and noticeable reactions to products containing wheat, rye and barley - and I have specific, visible and medically imaged internal reactions to the presence of gluten in foods. From 30+ years ago.

    Moreover, post-diagnosis at 7, and adopting a strict gluten-free diet, I grew over 12 inches in a year, and eliminated symptoms of malnourishment that were previously present; solid supporting evidence of something related to gluten being the issue.

    I'll continue on that basis to describe myself as a Coeliac and having a gluten allergy.. Semantics and doubters can go take a flying leap off something high. With sharp pointy rocks at the bottom.

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    1. Sounds very much like you developed CD as a child, Chris, given the improvement on a GFD. Good thing about paediatric diagnosis is that body heals more quickly, and less chance of long-term risks that decades-plus exposure to gluten can make more likely ...

      Thanks for commenting - Alex.

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    2. Hi Alex-I too was frustrated with some of the latest media coverage but as I have thought more about it I have concluded that I would rather people be talking than not. I have had more questions in the last couple weeks from friends and family who actually seen interested and want to "get" it.

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    3. Thanks Tammy - interesting perspective - and something I'd not considered.

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  3. Commendable job with the post... Thank you so much for sharing the same.

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