My journey through the lives of patients with coeliac disease.

I never read about coeliac disease during my MBBS or MD days. It probably did not exist or even if it did, we never made a diagnosis often enough for it to be considered an important condition. However, it became clear in the 1990s that coeliac disease was not restricted to Europe—the so-called world capital of coeliac disease— but was prevalent in the USA, Canada and many other countries, at rates similar to those found in Europe. Then came the realization that children and adults living in the wheat-eating belt of northern India were suffering from the same condition and the prevalence rates here were almost the same. It was in 1999–2000 when I started my practice in paediatric gastroenterology in Delhi, having completed my Fellowship from Mount Sinai Medical Center, New York. There, too, the diagnosis of coeliac disease was relatively rare at that time—most children with anaemia and diarrhoea had inflammatory bowel disease. As a result of an increase in awareness, coeliac disease is being diagnosed more often, though it is sometimes confused with Crohn disease. Most of the patients I initially saw in Delhi had a history of recurrent non-bloody diarrhoea. These children had stunted growth, distended abdomens, were irritable and often had haemoglobin levels of 3–5 g/dl. Almost all these patients had received several courses of antibiotics and at least one course of antitubercular treatment, and had a label of ‘Failure to thrive’. Convincing the parents to let the child undergo an endoscopy and a biopsy was a challenging task (and still is, though definitely less). Getting good serological reports was also not easy. At that time, the serological test available for coeliac disease was anti-gliadin antibody. This test was known to yield high false-positive and false-negative results. Some laboratories had started doing the anti-endomysial antibody—a test that used the immunofluorescence technique and was inherently difficult to read. One reference laboratory set up by a Malaysian group was sending samples to Australia for assessment of tissue transglutaminase antibody—probably the best bet, but the most expensive. However, the diagnosis was relatively easy once considered, as the biopsy changes were those of severe disease. And if there was any doubt about the diagnosis, it vanished when the child was put on a gluten-free diet and his/ her condition improved virtually every week. The challenge at the time was to explain the disease to the parents and grandparents and convince them of the need to put the child on a gluten-free diet. There was limited knowledge of this condition and there were hardly any suppliers of gluten-free food. No commercial outlets were available. We recommended going back to the basics of Indian diets, which have a large variety of naturally available gluten-free food. The good thing was that those days, not many readymade products were available and people did not have much disposable income either—this meant that children mostly ate home-cooked food and rarely had pizzas and burgers. The children may have been too young to realize how sick they were, but their parents did, and they went from doctor to doctor till a diagnosis was made. A good number of these children with coeliac disease continue to stay on a gluten-free diet because they have been told how sick they were before the diagnosis. Several of these patients continue to follow-up with me and it is a pleasure to see many of them grow into young healthy adults. Among the very sick children I described above, there were some with other forms of coeliac disease. For example, there was a child with only anaemia, a child who had severe constipation and was thought to have Hirschprung disease, a child with chronic liver disease progressing to liver failure, a child with type 1 diabetes who refused to grow despite good control of his blood sugar level, and a child of short stature. Over the next 5 years or so, the number of children being diagnosed with coeliac disease increased exponentially. An increasing number of paediatric gastroenterologists gave talks on the subject and more doctors became aware of the disease. Daylong conferences were organized on coeliac disease and no conference on the diseases of children was complete without a session on this condition. Articles appeared in the lay press. As a result, there was a gradual change in the patient population that came to visit me. Children with fewer symptoms started to come for a diagnosis. Endoscopy was more widely available and became more acceptable. Serology became better, cheaper and more accurate, and was now locally available. Most importantly, a number of gluten-free food outlets sprang up, mostly from homes which had children diagnosed with the condition. Rarely did I see patients with haemoglobin levels of 3 g/dl. Also, I came across many children with coeliac disease without a gastrointestinal

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