Living with coeliac disease

Living with coeliac disease During my third year at medical school in Caridff I gradually became unwell, with depression, lethargy, exercise intolerance, muscle weakness, a lack of motivation, and a general lack of wellbeing.

When I finally consulted my GP, I was told that I was anaemic and should eat a proper, balanced, healthy diet. But I had been "anaemic" for the past 12 years since regular attendance for blood donation had invariably resulted in a failed pinprick test, a full blood count, followed by a letter from my GP saying that I needed iron supplements and should eat a proper balanced diet. I had come to the conclusion that I just "ran on a low haemoglobin" and lay in the 2.5% of the population whose normal haemoglobin was below the normal range.

It was my flatmate, a registrar, who suggested that my haemoglobin level was not normal and that my diet was not responsible. In the absence of blood loss, he suggested that I was malabsorbing, might have coeliac disease, and should have my endomysial antibodies checked.

After some thought, I remembered a bout of irritable bowel syndrome during the finals exams of my first degree that was put down to stress, but coincided with a period of substantial weight loss (10kg) when I went on a (then trendy) high fibre diet, consisting mostly of brown bread and wholemeal pasta.

My flatmate persisted, giving me articles on the presentation of coeliac disease in adults, including the one that appeared in the BMJ in January 1999. The study reminded me that I had been prone to mouth ulcers for a long time and that this had also been put down to stress by my GP in Banbury. Ironically, the BMJ study was based in Banbury and it is likely that I would have been included in this study had I not moved to Cardiff. Furthermore, I had missed out on a "random screening study" at Cardiff where all students in the year below me were tested for antiendomysial antibodies.

Eventually, last spring, I got fed up with feeling ill and being nagged by my flatmate and went to my GP for the antiendomysial antibody tests. A week later I heard that the results were positive, much to the surprise of everyone except my flatmate.

Subsequent endoscopy and biopsy showed subtotal villous atrophy. I was sent to see a dietician and started on a gluten free diet.

All this was happening during my inter. mediate MB exams and I finally got the diagnosis one week before leaving for a three month exchange in Nantes. I had spent all spring looking forward to baguettes, croissants, and pain au chocolat.

I am now unable to eat anything that contained wheat, rye, barley, or oats. It has surprised me how complicated that can be. I can eat potatoes, but not chips - they are contaminated with gluten from the batter on the fish fried in the same oil. I can eat some brands of baked beans, but not others. There is rarely anything I can eat at drug lunches and the average hospital canteen seems to require gluten to be an ingredient in any food served.

Eating out has become a near impossibility and eating at friends' houses involves vetting the menus, advising on ingredients, and giving advice on avoiding contamination, such as asking them to use a fresh pack of butter because a used pack may have crumbs of bread or toast in it. It does not make me the easiest of dinner guests. Often I just turn up with my own food to make life easier.

Travel has become more complicated. One of the hardest things about going to France was getting a three month supply of gluten free ingredients. In the end, half my luggage was flour, bread, and pasta. I then arranged for visitors to bring items I needed and for things to be posted to me.

Getting to grips with my new diet has been challenging, but now, after a year, I feel as though I have mastered the basics. I have a small repertoire of recipes and rarely eat cake or biscuits. Thankfully, I had never eaten much in the way of processed foods, which almost all contain gluten, usually because of the use of modified starch as a thickener or emulsifier. Even yogurts can contain gluten. A new food labelling regulation is about to be introduced, making it compulsory to state the source of any starch used in food manufacture, which I hope will widen the range of foods available to people with coeliac disease as the dreaded "modified starch" will disapear from packaging around the supermarket.

I feel so much better on this diet that I can hardly believe how run down I was before. My energy levels have soared and I am now able to exercise regularly. Every time I am tempted by the look of a cake or the smell of freshly baked bread, I just try to remember how I felt before my diagnosis.

Jo Bramall, medical student, Cardiff


studentBMJ 2000;08:395-434 November ISSN 0966-6494