I always had a pot belly as a child which, in hindsight, could have been a sign of coeliac disease. However, I was relatively healthy until my late 20s. Then I began to suffer from stomach bloating and debilitating stomach pains. I had no energy but I didn't really do anything about it as I thought the symptoms would pass.
I also had quite serious constipation, so I started eating more fibre to alleviate the problem, but this actually worsened the situation. I continued to suffer from severe cramps, and throughout the day I found my clothes getting tighter due to my stomach being so bloated. In fact, I looked like a pregnant kangaroo. I didn't want to go anywhere and I often had to cancel meetings with friends in the evening time. It got to the stage that I was in pain all the time. There were times I couldn't stand up or sleep because the pain was so bad. However, it wasn't the type of pain which responded to painkillers. Things continued like this for a couple of years and I couldn't concentrate properly. Eventually, I went to my GP who referred me to the gastroenterologist, Prof Colm O Morain.
He took some blood tests and did a biopsy of my small intestine. I was found to be anaemic, and my calcium levels were also very low. My alpha-gliadin (the body's antibody to gluten) levels were also elevated.
The result of the biopsy showed my small intestine to be severely damaged in a manner consistent with coeliac disease. I knew what coeliac disease was but I didn't think I had it because I didn't have the classic symptoms of diarrhoea and weight loss. Immediately following the diagnosis, I was put on a gluten-free diet. This is initially quite difficult to follow, as it involves cutting out a lot more than bread and cakes. For instance, there is gluten hidden in some types of mustard, most soups, roasted but not salted peanuts and in mini-Mars bars but not regular-sized Mars bars. Basically, you have to avoid any food containing wheat, barley, rye and oats. The Coeliac Society publishes a handbook every two years which includes a list of all gluten-free manufactured products, which is helpful. The Coeliac Society also campaigns for improved ingredient descriptions on food. Modified starch can be made from wheat or maize, and coeliacs can only eat the latter. Some tablets also contain gluten as a starch, and people may think that such a small amount won't do any damage. However, if you are on a gluten-free diet, introducing a small amount can cause your gut to react.
Being on a gluten-free diet makes eating out difficult. You can never have soup and sandwiches for lunch, for instance, and Italian foods such as pasta and pizzas are full of gluten so they are out of the question. Soy sauce also has gluten and mayonnaise is likely to have wheat in it.
Non-compliance with a gluten free diet can cause cancer of the small intestine and osteoporosis. Also, having something with gluten in it can cause an acute episode of stomach cramps. I have had instances of the latter when, for example, I was accidentally served brown bread ice cream in a restaurant. I travel a lot for work, and I always order a gluten-free meal on the plane. However, even then, you have to be careful, because I have been given Ryvita biscuits and a Kit Kat in what was supposed to be a gluten-free meal. Essentially, you have to get your carbohydrates in other ways. I eat lots of potatoes and rice. Also, I eat gluten-free bread, rice noodles and corn pasta. There is the possibility of a genetically modified wheat (with gluten minus the gliadin component) coming on the market in the future which I would be keen on. Generally, coeliac disease is being diagnosed more in adulthood. People are sometimes discovering that earlier diagnoses of irritable bowel syndrome, chronic fatigue syndrome and colitis turn out to be coeliac disease.
I believe that everyone should have a medical diagnosis of a problem - with the relevant blood tests and biopsy if necessary - instead of turning to alternative treatments, allergy tests and fad diets. In that way, they can ensure that they receive appropriate dietary and medical treatment. Ireland has the highest incidence of coeliac disease in the world, with the highest concentration in the west of Ireland. One theory points to the potato famine as the reason for this, because after a long diet of potatoes, Irish people began to eat bread in vast quantities. Whatever the reason, it is known that there is a genetic component to coeliac disease.
Most people respond favourably to a gluten-free diet after three to six months. But I was still suffering from a bloated stomach and had distressing pains after a year on a gluten-free diet. It was discovered that because my intestine had been so damaged, I also suffered from a secondary lactose intolerance. This resulted in my having to go on a lactose-free diet, which meant no dairy products.
This new dimension made choosing the right foods very difficult. Now I had to eat gluten-free bread without butter and I had to plan in advance to take food with me anywhere I went. As time went on, I was still suffering from some pain, so I was prescribed Prepulsid tablets to take a half-an-hour before eating. These tablets facilitate intestinal motility, and I may have to take them for the rest of my life. Also, if you have coeliac disease, you need regular check-ups because things can change. In my case, things did change two years ago when, after a biopsy, white blood cells were discovered in my intestine. This was worrying at the time because it can be a sign of malignancy, but thankfully, following two months of corticosteroid therapy, the situation was resolved satisfactorily.
I still have unexplained episodes of stomach bloating, and air travel makes me feel worse but you learn to live with it. I don't think about having coeliac disease on a daily basis, and having to plan what and when to eat has become second nature to me.
In conversation with Sylvia Thompson
The Coeliac Society of Ireland can be contacted at 01-8721471