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Me and My Coeliac Disease

Five years ago, I was diagnosed with Coeliac Disease, defined by the NHS as ‘a condition where your immune system attacks your own tissues when you eat gluten’. You probably haven’t heard of it – I know I hadn’t when I received a letter from the doctors at the age of 15. 

What is gluten?

Gluten is found in wheat, barley, oats, and rye.

1 in 100 of us have it, but most people don’t get diagnosed until their 20’s/30’s, (once I met a man in Sainsbury’s who had just been diagnosed in his 70’s!). It is often mistaken for IBS, general bloating, or a gluten allergy. Though it does have similar symptoms to all of these aforementioned conditions, it can have long-term side effects if it isn’t treated properly. 

The only treatment is to stick to a strict gluten-free diet. I can’t have a ‘cheat day’ or be careless, as my dietitian will know or I will be bed-bound in pain. I can’t even eat products that ‘may contain’ gluten, use the same toaster as my family who eats normal bread or share cutlery due to cross-contamination – even the tiniest crumb can have an effect.

Imagine telling a 15-year-old that they can no longer eat the carby goodness of pasta, pizza, or cake without it damaging their gut? It was crushing, I’m not going to lie. Some days I still lie awake dreaming of noodles…

Before I was diagnosed, I found myself being ill quite often and for long periods of time, I would generally feel weak and exhausted, which in hindsight was because eating gluten killed my Villi (the place that absorbs your nutrients). I was iron deficient, vitamin D deficient, and certainly energy deficient.

Five years is a long time to be gluten-free, and if I am honest, I still struggle with a lot of these things. The biggest struggle for me, which is often overlooked, is the social struggle. I always feel so guilty when I must ask people to choose a restaurant that serves gluten-free food instead of their other choice, or when someone offers me food and I have to politely decline as I cannot risk being ‘glutened’ at all costs. And obviously, there are times when I have been accidentally ‘glutened’, which just makes eating out a bigger stress. 

Beer isn’t gluten-free, and some spirits aren’t either. At literally any moment I have to be so alert as accidents can happen so easily, and a nice cold one with the gals can turn into being bed-bound for a few days in just one sip. I feel so awkward that sometimes I must miss out on things with friends because I don’t want to be a burden. 

However, most people are so accommodating and understanding; they offer to make me an alternative and usually are very apologetic! 

Overall, it hasn’t been as hard as I expected. But it has brought new stresses beyond comprehension. Looking to the future, I have officially got my first in-person dietitian appointment in over two years (wooo!). It seems my Tissue Transglutaminase IgA antibody levels are playing up at the moment, so we are trying to get to the bottom of this. As I am typing, I am beginning to cut out ‘gluten-free oats’ and ‘gluten-free wheat’ too because, despite the fact they are gluten-free, they still can trigger some coeliacs! Hopefully, this will help with the physical struggles I have been facing and allow me to have much more energy despite being an auto-immune disease carrier.

As for my social anxiety- it will get better. Today, more restaurants than ever provide gluten-free options, so that’s more choice for me and my friends now we can eat out again. And if all else fails, I still have cheese!

You can click here for the NHS page on Coeliac Disease, explaining possible symptoms:

https://www.nhs.uk/conditions/coeliac-disease/

And if you require any information and support from a recent diagnosis, you can click here:

https://www.coeliac.org.uk/information-and-support/

Words by: Anna Duffell

Edited by: Harsheni Maniarasan

I am a Communication and Media Student at the University of Leeds, who enjoys writing about Taylor Swift, Feminism, and Theatre! President 2021/2022
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