Coeliac disease - Graham's story

Graham tells us his personal story

Graham tells us about living with coeliac disease

I was diagnosed with coeliac disease in February 2016. But looking back there were signs that I probably had the condition long before that point.

For years I had regularly felt bloated and constipated without knowing why, to the point where these problems felt very normal to me. I first saw a GP about my symptoms around 12 years before being diagnosed. They suggested that it may be irritable bowel syndrome (IBS) or possibly stress I had been experiencing due to a new job.

One sign that I might be coeliac came the summer before my diagnosis, during a holiday in Italy. Like most tourists do, I spent a day enjoying meals of pasta and pizza. Until the evening that is, when I started having chest pains! That was followed by several days of constipation. It sounds obvious in retrospect, but at the time I didn’t manage to pinpoint exactly what was causing the problem.

Back home a few months later, I went to donate blood, which I had done in the past without any problems. After a routine pre-donation finger prick test, the nurse informed me that I couldn’t donate because the level of iron in my blood was too low.

Based on my low iron level and other digestive symptoms, my GP arranged for me to have two hospital tests. These were a gastroscopy (a camera into the small bowel via your mouth) and a colonoscopy (a camera into the large bowel via your backside).

It was a biopsy (a sample of cells) taken during the gastroscopy, combined with blood test results, that confirmed my diagnosis of coeliac disease.

Finding out I had coeliac disease

Finding out was quite a shock. I only had the vaguest idea what coeliac disease was, so had to learn quickly.

I found out that coeliac disease is a condition affecting your immune system. Your immune system is there to fight off illness, but if you have coeliac disease it attacks your own tissues whenever you consume gluten. Among other things, that can lead to your body not absorbing nutrients properly. That was why I had a low level of iron (anaemia) when I went to donate blood.

I also learned that gluten is a type of protein which is found in wheat, rye and barley. It’s in most types of bread, cereal, pizza, pasta and beer, but it can also be in a variety of other foods from sauces to snacks.

After diagnosis I needed to try to cut these foods and drinks out of my diet completely. I also had to avoid cross-contamination, which is where foods are exposed to gluten while being prepared or cooked (for example, by being fried in the same oil). The Coeliac UK website was an invaluable source of information as I was learning all of this.

Living with coeliac disease

Living gluten free certainly has its challenges. Gluten free foods from the supermarket are generally more expensive than the ‘normal’ equivalents. Perhaps the hardest part for me though, although it might sound trivial, is the attention being coeliac puts on you when going out for meals or socialising with friends, family members and workmates. Whether visiting a friend’s house for dinner, or going for a meal at a restaurant, people need to adapt and accommodate my needs. And I have to plan ahead and communicate clearly about my dietary requirements. Most people are very understanding, but sometimes there’s a sense that people think I’m following a fad diet or being difficult.

For anyone newly diagnosed with coeliac disease, I really want to emphasise the positive aspects too. Gluten free foods have come a long way in recent years and it can even be quite fun hunting down gluten free treats. I’m a member of a great Facebook group where people track down weird and wonderful gluten free beers, for example. It’s a bit like being a member of a club.

And the best thing is that your symptoms should be relieved after going gluten free. I’ve certainly experienced a very noticeable difference and I feel a lot better for it. It’s been a huge relief.

If you think you may be reacting badly to gluten, I’d recommend talking to your GP before changing your diet. That way, they can arrange tests before you go gluten free. Otherwise, the change in diet could affect the test results and a correct diagnosis may be missed.

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