There’s more than one way to be a Coeliac

Being a parent has taught me to be less judgemental about other people’s parenting choices. When you are barely surviving on a few hours snatched sleep you’ll turn to coping methods you thought you’d never entertain before you had kids (hello, dummy; hi, holiday kids club). You realise that you don’t always know the full story behind why someone has chosen to do things a certain way; we’re all finding our own higgeldy-piggeldy path to a happy life.

In a similar way, I think we should be less judgemental about the way people manage their health conditions – of course thinking specifically about Coeliac Disease and the way people respond to their diagnosis and manage their gluten free diet. What works for me, may not work for you; and may not work for Joe Bloggs.

I say this because I see a lot of, dare I say it, snobby content online from people who only bake their bread from scratch with ‘no nasties’; or who follow various restrictive; and let’s face it, privileged, gluten free diets; for example ‘Paleo’, ‘Whole 30’ or just ‘naturally gluten free’. I’m trying not to judge people who do this as I write; those people have clearly found a diet that works for them, which helps them to feel their best and that they fit into a lifestyle they can tolerate or hopefully enjoy!

It doesn’t follow that this kind of dietary approach to managing Coeliac is the best approach for everyone. It’s not affordable for some in terms of time as much as financial cost. To be honest, it’s not tolerable for many. A life without a ready-made packet mix to get tea on the table after work is more stress than is needed; sometimes you just want a damned doughnut; and a kids birthday party without cake is… well you catch my drift.

It may not even be the best approach for everyone’s health (remember health is about more than just your digestion, mental health is important too). The severity of reactions and complications with Coeliac varies enormously from individual to individual. Many of us seem hyper aware of co-existing intolerances or symptom flare-ups and adapt their diets accordingly; others can get on pretty much with normal life with a few switches. You just don’t know the back story.

It won’t be a popular view, but I don’t think we can even judge those who chose to ‘cheat’ on their gluten free diet; any more than we judge someone who chooses to indulge in the occasional tipple or cigarette. Assuming they have been given the right information that person has weighed up the potential health cost, and decided the odd beer/croissant, or not offending the elderly relative who’s slaved over a posh meal is worth the risk. “But it’s doing damage on the inside even if you don’t get symptoms!” you cry – well, maybe. That’s their decision to make. (But actually, research seems to show symptoms do not always equate to intestinal damage).

“But those people give us a bad rep. They mean the waiter in a restaurant will think it’s ok to serve me ‘just a bit’“. Yes, that’s true. The thing is, when we got handed a diagnosis; we didn’t also get handed our card to be paid-up coeliactivists. Not everyone wants to be ‘A Coeliac’, some just want to be a person who happens to have a condition, getting on with life and blending in as much as possible when someone orders pizza in on Friday in the office. And I think that’s ok. Those of us who feel it is important to interrogate the waiter can, we can also get involved in advocacy groups like Coeliac UK to bring about process change and raise awareness for the benefit of all; so that everyone can make informed decisions about their health and welfare. Surely people should be empowered to manage their own diet? People aren’t empowered if there’s only one ‘right’ way to do things.

What do you think?

5 responses to “There’s more than one way to be a Coeliac”

I think we can (and do) judge — perhaps even subconsciously on occasion — but how we act on those judgments for me is the issue. I don’t think we can berate individuals unless they are, for instance, encouraging others to cheat too, or obviously harming the (compliant) gluten free community by their actions or behaviour. I’m reminded of the Anthony Demetre saga of, what, five years ago or so. He confessed to gorging on gluten periodically on the telly, but it wasn’t that which was the problem so much, it was the confusing messages that came with it, and the trivialising laughter too. As our friend David J said, “They’re his villi!” I’ve seen research which suggests over half of coeliacs cheat: and I suspect cheaters are far less likely to be active on social media, which is why it’s easy to assume they are few in number.

Yes! Yes! Yes! My daily grinding exhausting existence is filled with self doubt and self judgement, I don’t need someone else to do it for me and to my hubby’s irritation I’ve perfected balancing on the fence when it comes to other peoples lives. My baking is convenient, I refuse to use fandangly ingredients that you’d have to remortgage the house to buy and I’m all for shop bought items that make my complicated life less complicated. I’ll worry about my shit, you worry (or not) about yours and we’ll all get along swimmingly.

Totally agree. Just because we all follow the same “diet” doesn’t mean we all have to eat in the same way or manage it in the same way. We all have to take our own personal responsibility and decide what’s right for ourselves, so long as we’re all aware of the (medically sound) facts.