Sunday, 10 November 2013

Coeliacs! Should We Lighten Up?

Ok, I realise that I might get an angry backlash from some about this post, but bear with me. Quite recently, I came to the conclusion that we Coeliacs take ourselves a bit too seriously.

Before you jump straight to the comments section, let me explain.

I'm all for getting mad when Coeliac Disease is misrepresented in the media. A recent Telegraph article called the GF diet a "scam", while The Daily Mail prefered the term "con" (because it doesn't help you lose weight). Caught up in pedantry, tell us that "nobody is actually "allergic" to gluten". Actually, we take a bit of a beating in the press, mostly because ill-informed journalists like to lump people with diagnosed Coeliac Disease and NCGI and faddy gluten free toe-dippers (and everyone in between) together and mock our dietary choices (or not-a-choices, in the case of CD).

What with the bashing we take in the press, you'd think that celebrity chefs might at least have a better understanding of our condition thanks to their training in food. Alas, no. When Coeliac chef Anthony Demetre admitted to gorging on gluten every few months the BBC refused to issue any kind of correction because, "in discussing his eating habits Anthony was expressing his own personal way of coping with the condition and at no point did he advocate it is a diet that others should try." (I'm still not convinced by that brush-off.) When Food Glorious Food judge, Stacie Stewart, described Coeliac Disease as a "lifestyle choice", at least ITV issued an apology. (Although, you might say that since it was pre-recorded the show's makers could have edited the comment out before it caused offense!) Even the usually lovely (tax evasion notwithstanding) Martha Stewart thinks that our dietary restrictions are due to us being fussy.

If that's not enough, we have to deal with poorly researched articles that only cause confusion. Then there's the free from food producers who perpetuate the myth that a gluten free diet somehow helps increase fitness and weight loss in the pursuit of better sales. Oh, and there's the constant need to remind all and sundry that spelt is NOT gluten free!

I think we should stand up for ourselves when the media attacks. We should pull journalists and editors up on nonsense reports and overly personal pieces on gluten free diets, and we should demand that bad advice be corrected. But (and it's a big but) we need to know when to fight and when to back off.

Recently, Paul Hollywood was asked (in a live radio interview) about gluten and wheat free baking. From his comments, some people got upset that he was suggesting that Coeliac Disease was often misdiagnosed. He suggested that people try sourdough and artisanal breads before cutting wheat from their diets completely. I listened to the broadcast and really felt for him, he was clearly "sceptical" about self-diagnosed wheat intolerant people (who, incidentally, really should speak to a GP or dietitian before cutting any food from their diet) and not about medically diagnosed Coeliacs.Angry blog posts, Facebook statuses and tweets ensued. He did take to Twitter that same day to defend himself and admitted that Coeliac Disease, NCGI and gluten free baking was something he needed to do more research on. All credit to him.

And, so, to my point...

I think the biggest reason why Coeliacs take offense to apparent slurs against the gluten free diet is because we're parcelled up with everyone on the GF bandwagon, diagnosed, self-diagnosed, not ever diagnosed and trying-it-because-Miley-Cyrus-does-it. We can't let an opportunity pass without reminding people that we have a MEDICAL CONDITION, it's not a choice (lifestyle or otherwise) and that eating gluten free is the only treatment for that condition.

The problem is, we end up coming across as over-sensitive, touchy and devoid of sense of humour.

When Marcus Brigstocke's 'The Brig Society' aired and episode on food, he was barraged with complaints from Coeliacs and NCGIs who missed the point, that he was mocking those half-hearted trend-driven wheat avoiders. Likewise, Sean Lock's jokes in the video at the top of the page. Where did our sense of humour go?

Should we be so quick to pick up on obvious jokes and genuine errors about Coeliac Disease and NCGI? Perhaps if we gave them a chance to retract, explain or generally apologise for misspeaking we'd be a little less stressed out? 

I roared with laughter at The Brig Society's portrayal of someone who can't eat gluten - unless it's really nice bread. We've all met someone like that, and agree that it degrades the seriousness of our own gluten free needs, so why can't we laugh when someone else points it out? The cartoons of Howard the Celeriac show us a funny side of our gluten intolerance that most of the GF community enjoy. So, can we only laugh at ourselves when 'one of us' cracks the joke?

Yes, sense of humour is a deeply personal thing and what's funny to one person isn't to another. I love that Sean Lock clip, but other Coeliacs said it was ignorant and that it shrinks a real issue into merely an inconvenience. Others thought it was a bit too close to the line between funny and offensive (but then, all of Lock's jokes are).

I read one comment about Sean Lock's jokes saying that, "making jokes about Coeliac Disease is as unfunny as making jokes about cancer or MS." Erm, no. I think that's offensive to people with diseases that require aggressive treatment. We're jolly lucky that we can treat our condition with diet! Having lived under various drug regimens (some with horrible side effects) for nearly 20 years thanks to Crohn's Disease, I found going gluten free empowering. We have the power to effect our own well-being with what we eat, it's great! Let's celebrate that instead of getting upset by harmless jokes.

So yes, pre-diagnosis Coeliac Disease is no joke. It's painful, exhausting and filled with many other health risks. Once we start our gluten free diets, though, life gets better. It takes a bit of getting used to, but it's an inconvenience at most. Eating out is tricky, but not impossible. Some people make insensitive comments, but they're usually insensitive people. It's nothing personal. The gluten free community is a wonderfully supportive bunch of people who are always willing to offer encouragement. Things just aren't that bad.

Isn't it time we learned to laugh at ourselves?


  1. I literally love this post! Completely agree with everything you say. It is frustrating the amount of misconceptions out there but then, having coeliac disease isn't the end of the world! Does it ever upset me? Nope. And as for Howard the Celeriac - that blog is absolutely genius!

  2. Excellent well balanced article. Back 22 years ago, they thought I had leukemia and luckily it was just coeliac disease, so cutting out gluten seems a small price to be alive. I think it is important to have a sense of humour and most of the time I do, with a few exceptions....

  3. Indeed - choose your battles. I don't mind the odd joke what I really object to is people who are inconsiderate - contaminating everything is sight. I'll learned to keep away from anything at work events like buffets at laving dos - somebody will have moved stuff around.

    I don't mind the jokes - "Say that again and I'll force feed you bread pudding" - as long as they make me laugh.

    Actually, what really hacks me off - you've got me started now- is when people bring in cakes for everybody, look at me sympathetically and soay "Oh dear, you can't have this can you?" No. I bloody can't, but just once you could get me an individual portion of something labelled gluten-free, couldn't you?

    And breather. And relax.

    1. Oh agree with that last point made by Claudio - that is soooo annoying!! As if they didn't think of that before!! Grr.

  4. What a great blog post. Very easy to get bogged down and bitter about having Coeliac...

  5. Great post! I was diagnosed with coeliac as a baby, over 50 years ago, and back then it was almost unheard of. I have seen the gluten free diet go from something that got blank looks and comments like "oh so you can't have potatoes would you prefer pasta" to "yes we have a gf menu" and the world really has changed that much in that time. It annoys me when people think it is a fad diet that you can come off of and go back on as you please. The slightest mistake made with what I eat sends me racing for the bathroom, without even realizing I have made a mistake. I try to ignore jokes and snide comments, rather than flying off the handle, even when I get called a "genetic freak" by a particular family member. I do wish I did not have the condition, but I would rather live with this than other serious issues that require pills and/or surgery.
    Sorry I have rambled. - Carol -

  6. Laughing can be good, but only in the right context. A chsin restaurant offering a gf safe experience recently poisoned my partner. To make up for it they offered us a free meal. However the waiter giggling and saying that he hoped my partner wouldn't be dashing to the loo after eating didn't really make for a fun night out!

    1. Absolutely, I've had similar comments from waiting staff and it's far from funny. There's a big difference in laughing at us, and laughing along with us.

  7. If it wasn't for all of us filthy undiagnosed 'faddies' also demanding gluten free, would there be so many gluten free choices in restaurants these days? Maybe diagnosed Coeliacs should be a little less disparaging of the undiagnosed. Otherwise, good article ha ha!

    1. The lifestyle gluten-free-ers are the one driving the free from industry and I tip my hat to them. Without 'faddies' we'd have less choice in supermarkets, too!

      I'm not disparaging of the undiagnosed, I have massive amounts of respect for people who can give up gluten with will-power alone, no medical imperative involved. I am disparaging of those who are gluten free until the dessert menu shows up - it makes life as a Coeliac a lot harder when people do that.