Category: Coeliac Disease

6 Phrases a Coeliac Sufferer Doesn’t Want to Hear

6 Phrases a Coeliac Sufferer Doesn’t Want to Hear

For reasons that truly perplex me, gluten free diets and the idea of ‘going gluten free’ is now a popular phenomenon among healthy eaters, and so many people now try to cut down on gluten when there’s absolutely no reason to do so. So many studies have shown that there is no benefit to being gluten free unless you are actually intolerant to it. Why do people throw away the chance of being normal, of being able to eat whatever you want, being able to eat food which tastes so much better and costs so much less? If I had the choice to be gluten free or not, I definitely would choose to be normal!!

Anyway, all this means that whenever I tell anyone I can’t eat gluten, I’m always worried that I’m going to be judged, that they’ll misunderstand and think that I’m just a health-freak, when that’s not who I am at all. I have to make sure they know that I’m genuinely a Coeliac and that it makes me very ill whenever I have it, and I shouldn’t have to explain that.

This post essentially hits the nail on the head with the stigmas that now surround gluten free diets:

Bee Free From Gluten

As it is Coeliac Awareness Week, I thought this would be the ideal time to write a quick post about those all annoying phrases that a Coeliac sufferer, such as myself, DOES NOT WANT TO HEAR!

1. “Gluten free is just a fad diet”

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Maybe for SOME people who do not need to be on a gluten free diet, but for Coeliacs, it is the ONLY ‘treatment’ that allows us to feel better and keep our guts from being damaged by gluten, a protein from in wheat, barley, and rye.

2. “Oh you can eat a little bit of gluten surely”

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Nope. Even the smallest amount of gluten can set our symptoms off. Believe me, a Coeliac knows when they’ve been ‘glutened’!

3. “Stop being fussy and just eat it”

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We are not being fussy! Coeliac isn’t like being a vegetarian or vegan, it isn’t a choice…

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Life with Coeliac Disease

Avoiding gluten for reasons to do with ‘healthy eating’ is such a common occurrence these days that I often worry about not being taken seriously as a coeliac, whose body genuinely cannot tolerate gluten.

When I have gluten it makes me physically ill; for me, eating gluten means that I will throw up a few hours later and probably have a sore stomach for a couple of days. Coeliac disease essentially has a different effect on every coeliac, though, and the results of having gluten varies from person to person, but often involves vomiting, diarrhoea, stomach ache, and potentially deficiencies in vitamins due to the damage to the gut making it difficult to absorb nutrients.

I’ve been a coeliac since I was 7 or 8 (10 years, now), so catering for myself isn’t really an issue; I know what I can and can’t eat. It’s when I rely on other people that I worry about. Although restaurants have got a lot better in recent times regarding food allergies and intolerances, with knowledge of gluten in particular rising because of the popularity of the gluten free diet but also especially because of laws which now mean that staff have to be able to tell us or show us which allergens are found in each dish. However, while it’s so positive that we can now freely ask or (even better) have notations on the menu or a separate menu, we are also still reliant on the knowledge of others. More times than I’d like to count, my family have been told that something is gluten free or asked for a gluten free version of something, and it has turned out that it wasn’t gluten free after all. And this means that the idea of going out to a meal makes me feel nervous and uncomfortable, because you don’t really know what’s in your food; the rules about what coeliacs can and can’t have can get quite complicated, and I have to wonder how well people who don’t live with this condition know these rules.

Being an eight-year-old child, still at primary school, finding out you have coeliac disease was pretty tough. Of course, there are so many worse conditions that I could have had and that other people do have, and I am in no way saying that coeliac disease is the worst condition out there, I simply want to raise some awareness of the issues which coeliacs deal with. Anyway, finding out that you suddenly can no longer eat food that you used to eat wasn’t easy. It didn’t really sink in at first, as there were quite a few gluten free alternatives to certain foods, so my child-like brain sort of assumed that I could still have those things. But when I started to go to parties, or have school dinners, or learnt to cook in school, I started to realise that I was different. I had to bring my own food, or have to ask if something was okay, or just not eat anything. People would ask about this from time to time (and still do) and I’d have to explain that I couldn’t have gluten. Essentially, I’d have to explain that I was different, that I wasn’t normal, that I couldn’t just eat food without thinking about it like other people could, like I wanted to. After a while, I think it started to make me self-conscious, made me not want to be noticed sitting in the corner eating my own sandwiches while everyone else enjoyed the food provided, so that I wouldn’t get more questions about why I was being odd.

And part of me started to feel ashamed. Ashamed of being different, of being difficult, awkward to cater for. Ashamed of having to hold up queues to ask if something was gluten free, afraid of people judging me for being difficult. I still sometimes feel like that now, to be honest. When I do go to restaurants and ask if something is gluten free, I feel like maybe they think I’m choosing to be gluten free, like I have a choice and that I’ve chosen to be awkward, a time-waster. I worry that they won’t take me seriously, that they will judge me, think less of me. I begin to over-think, to wonder what people think of me, to not want to be thought of at all. I grow into myself, wanting to be out of eyesight, out of the way of judgement.

I’m not saying that me being an introvert was caused simply by not being able to eat gluten, and I definitely don’t actively think now about being different to others in that respect, but I think that in some ways it definitely set me down the path of thinking in that mindset, to be pushed further down by other factors in my life.