My Coeliac Story

Coeliac is one of these funny illnesses that affects everyone in different ways. No two experiences are the same. Some people can date their symptoms back to a specific date but for me it was never like that. I never even thought I was ill until I started noticing all the little things. But first, we’ll talk about the big thing.

My big symptom was mouth ulcers. I’ve suffered from ulcers since I was a kid. I have carried bonjela or tyrozet lozenges around in my bag since I was in high school. My mum once took me to the doctor to ask for a blood test to see if I was anaemic but the doctor said my ulcers were most likely hormonal and that I would grow out of them. In fact, the amount of uclers I would develop per month increased significantly over the years, to the point where I might have 8 plus ulcers in my mouth at any given time. The worst I can remember is an ulcer that my hygienist claimed was the size of a 50p on the back of my throat! I was in agony and there seemed to be no trigger. As well as the ulcers that would develop on their own accord, any little cut in my mouth would morph into an ulcer too. It formed a never ending cycle as I was plagued with ulcer after ulcer. Finally, at the age of 21, I asked my dentist to refer me to the dental hospital to try and figure out what was causing them. Here, I had my bloods taken, and after waiting a month for results, was told I might have coeliac disease.

I knew about eating gluten free as I worked in a restaurant at the time, but I’d never heard of coeliac disease. As the doctor listed symptoms I found myself nodding and agreeing. It wasn’t until someone pointed it out, that I understood how ill I was feeling. I was always tired, no matter how well rested I tried to be, and I frequently had headaches. I almost continuously had a mild cold that occasionally developed into a severe cold. I picked up little bugs so easily!

I think I can trace the typical symptoms back to my first year at university at age 17. At night when I was getting ready to go out with my friends, I would feel really bloated. I’d look at my stomach in the mirror and wonder why it had tripled in size since dinner! It made me look pregnant and I’d spend the whole night sucking my stomach in. I frequently suffered from terrible indigestion. From my fourth year at university onwards I can remember having an upset stomach almost every day. But I never made the connection until someone threw the word “coeliac” at me.

It was a long, horrible wait for a biopsy. And it’s not the most pleasant experience. I had a weird reaction to the sedative and although I felt perfectly fine, I cried for about an hour when I came out of the op for absolutely no reason whatsoever! But to hear the nurse say “obvious coeliac disease” to me was like hearing the answer to all my problems.

When I left the hospital, I had so many questions. What do you eat? How can you just stop eating things you used to love so much? The first step is clearing out the kitchen! We made a decision to keep as little gluten containing food in the house as possible. Throwing out the chicken noodle soup packets was HARD! It feels like the worst thing in the world, until you have to actually find something to eat.

Imagine looking at a display of food, and seeing loads of things you want to eat, and then facing the realisation that you can’t eat anything there at all. It’s horrible. Going to the supermarket became a nightmare. I felt like I was being taunted by all this delicious gluten containing food! I used to wander around food courts and restaurants looking at menus and seeing absolutely nothing that was gluten free or, if there was something, nothing I wanted to eat! I lost my appetite for a short while because not eating became easier than struggling to find something.

But you learn. It gets easier. Since my diagnosis, many more restaurants have expanded their gluten free dining options so we have a lot more choice than before. Finding something appetising to eat that is also going to be stomach friendly is always going to be a challenge but it’s one I face with growing confidence every day. It makes it all worth it when you start to feel better. Over the last few years, eating gluten free has become “trendy” on account of more celebrities choosing to follow a gluten free diet. This has both good and bad points, as although it has increased awareness, it has also made people take it a little less seriously as not everyone needs to be as strict with cross contamination as I do. Every time I see chips labelled as gluten free on a menu, I sense a battle coming with the waiter as to whether they are actually gluten free, or are they fried with other gluten containing food meaning they would not be safe for me to eat.

Despite the huge developments in recent years, there is still so much room for improvement. It’s almost impossible to eat gluten free safely from a takeaway, and finding Chinese food that I can have is always challenging. Coeliac UK are currently running a great campaign to encourage restaurants and takeaways to join the Gluten Freevolution so please have a look at the campaign and encourage your local takeaways/restaurants to join up!

I can’t even put in to words how much healthier I feel since I started eating gluten free. It’s like I had no idea how unwell I was until I started feeling better. I still gluten myself occasionally, and it’s never a pleasant experience, but on the whole I find my diet quite manageable. I don’t get anywhere near as many mouth ulcers, even my skin has cleared up tremendously (something I didn’t think would be related to gluten at all!) and I even managed to put on some weight. The coeliac community online is fantastic and there are so many resources out there for new and existing coeliacs.

People think coeliac disease is an allergy but it’s not. It’s a lifelong auto-immune disorder and can have serious consequences. If you have any of the symptoms I’ve mentioned, then it’s worth speaking to your GP about the possibility of being coeliac. It’s only a blood test to start and if left untreated, coeliac disease can cause osteoporosis, an increased risk of bowel cancer and can also cause fertility problems. Check out the Coeliac UK website if you are concerned about your own health and would like some more information.


NOTE: I wrote this post originally in 2013 for Coeliac Awareness Week and have now updated it.


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