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Coeliac disease: my story

4 mins read

Before May of this year, I had very little idea of what coeliac disease was. That very quickly changed.

For months, I had been feeling constantly exhausted and drained. Even simple tasks like doing the laundry, or walking my dog, left me sapped of energy. But it had been so gradual, I hardly noticed how ill I was.

After complaining about repeatedly feeling dizzy at work, my mam had had enough. She called the doctor for me, and after telling him my symptoms, he suggested I have a blood test. I used to be terrified of needles, but I’ve had so many injections and blood’s taken this year it doesn’t faze me anymore.

The blood results came back. I was severely anaemic. My doctor said I had the lowest iron levels he had ever seen. I was also deficient in calcium, folic acid, vitamin D and vitamin B12. My spleen function was abnormal, which meant my immune system was weakened. I had to get lots of booster vaccinations, B12 injections and was given four different types of pills.

But why was I so ill? Firstly, my doctor thought my heavy periods were to blame for the anaemia. I was prescribed birth control, but my problems persisted. So, I was tested for coeliac disease.

Coeliac disease is an autoimmune disorder. Basically, the immune system thinks anything containing gluten is evil, so it ends up attacking and destroying the gut. This prevents you from absorbing nutrients from your food which causes bloating, stomach pain and various other symptoms.

The test came back positive.

At first, I was shocked. I hardly ever had any stomach problems and had been eating gluten all my life, so surely, I couldn’t be coeliac?

Wrong, Freya of the past! It is possible to have the disease and never experience any of the gut-related symptoms. My symptoms were much more general, including fatigue and weight loss.

Once my confusion passed, I felt so relieved. Finally, I knew what was wrong with me. And all the damage done to my gut was easily reversible.

Just one catch: never eat any gluten again. Ever.

Seems simple, right?

To an extent, yes. Most supermarkets have a good selection of gluten-free products nowadays. With a coeliac diagnosis, you can even get some things like bread and flour free of charge from the NHS here in Scotland (thank you Nicola babes).

But it also means no more Pringles. No more Biscoff, no more croissants. No more noodles (yes, I’m aware that rice noodles exist, BUT THEY ARE NOT THE SAME). It means checking the ingredients on every single thing I buy because they sneak gluten into the most random things. Curry sauce, sweets, crisps, soup, you name it.

I won’t lie, I did cry a little after my doctor told me the test was positive. I don’t cope very well with change and gluten-free food is expensive. The thought of eating gluten-free whilst on a student budget was daunting, but it is definitely achievable.

The NHS’ gluten-free food service is excellent, as simple things like pasta and bread can be costly as a student. Staples like potatoes and rice are now my best friends. I would also recommend baking sweet treats yourself if you can, as GF biscuits and cakes in supermarkets are overpriced and honestly not very good.

If you think you may have coeliac disease, or just want to learn more, I recommend these websites:

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Film, media and journalism student. I like writing about my inability to eat gluten.

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