Coeliac Disease – you have a choice

I’ve been thinking a lot about ‘choice’ lately.

There have been a few blog posts and social media debates recently about those who make dietary ‘choices’. Those with coeliac disease, in case I was in any doubt I am told, “have no choice”. There’s even a hashtag doing the rounds every so often: #NoCureNoChoice.

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Granted, yes, no-one chose their numbers in the genetic lottery. I didn’t ask for my coeliac diagnosis. And if you’re reading this and finding that diagnosis hard, as many do, I’m sorry. You might be feeling overwhelmed, sad or angry. It’s normal, and in lots of ways akin to grief for the loss of a lifestyle you are familiar with, or opportunities lost. For you I say don’t worry, it does get easier, you will find new opportunities, foods to love and a supportive community online or through your local coeliac group. Hang in there.

But it does seem there is a lot of anger amongst some members of the established coeliac community too, about the injustice of their situation. That anger is at its most ugly when it is turned on other groups with dietary restrictions. “I don’t have a choice but to eat gluten free” is often levelled at vegans, vegetarians, or those who dare to have eluded a formal diagnosis for their diet-related ills. I’ve probably said it myself at some point, frustrated that someone would impose an ‘unnecessary’ restricted diet on themselves.

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The thing is (and I’m going to be roundly berated for saying this) that I have no choice is not entirely true. Those with coeliac do have a choice in if, or how well, they manage and adhere to their diet.

If your symptoms are severe and your health poor, I agree, the choice feels like a no-brainer. You will take extreme lengths to avoid even the tiniest fragment of gluten and probably compromise your quality of life in other ways to achieve it. Maybe you sacrifice the freedom to eat out unplanned, maybe you don’t eat out at all. Maybe you restrict your diet to ‘whole’ foods and exert control by always cooking from scratch. I think most of us try to practice some balance – taking measures to protect ourselves, but sharing houses with gluten-eaters, eating out and enjoying travel. I’ve written on this before here.

But in fact, there is another end of the spectrum. The many unspoken people who don’t make an issue of their coeliac disease or seek out a new ‘community’ online. People who have made the choice not to take so much care, who ‘cheat’ on their diet, and probably, people who don’t follow their prescribed diet at all. Maybe it’s due to lack of symptoms, maybe they judge the sacrifices too hard to make. Possibly they can’t afford or understand how to stay gluten free. You don’t hear from those people – in fact if they are interested at all in being a part of the community of coeliacs, they probably get scared off by evangelistic rants about there only being one way to live, recover and heal; and symptom one-upmanship “oh that’s ok for you, but I’m really sensitive.”. There are certainly not many people sticking their hand up and saying ‘actually I still eat the odd croissant and share a toaster’. That doesn’t mean they don’t exist. They might not even be a minority.

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To be clear, I don’t really advocate that choice (don’t worry I didn’t eat the products pictured, but I do prepare them for my gluten-eating family). We know that therein lies the route to gut damage and ill-health later in life: the spectre of nutritional deficiencies, osteoporosis, and possible cancers. (I say possible – because I feel the most vocal advocates often overstate the long term health risks associated with occasional accidental gluten consumption).

But neither, to draw a parallel, do I advocate smoking. Do I turn on the family members and friends who enjoy the occasional cigarette at a social occasion? Do I pop off about the evils of smoking online? Nope. Doing so would alienate them. They’ve made a choice to manage their health risks and balance their enjoyment of life in that way in full knowledge of the facts, and that is their perogative. We can still be friends (just so long as they respect my choice too and keep their second-hand smoke and gluten away from me!).

Even if I did want to try and ‘help’ them by encouraging them to change their behaviour, it’s notoriously hard to get people to adhere to health-protective behaviours if the pay-off comes so much further down the line. Recent informed debates about the Cancer Research UK ‘OB_S__Y’ (obesity) campaign should also have taught us that yelling “you’re doing it wrong” in someone’s face is rarely likely to result in behaviour change.

So please don’t say you don’t have a choice but to eat gluten free. You do. You chose to take action to protect your future health. Good for you. Let’s allow other people to make the choices that work best for them too, and certainly not try to shame people who have made different types of dietary choices for reasons of their own, be they medical or ethical.