Four-and-a-half-year-old Samragyi continually complained of abdominal pain. Parents Kapil and Sonu Juneja, both doctors in New Delhi, felt it was a gastro-intestinal infection. Other doctors they consulted felt the same. Until suddenly Samragyi became very anaemic. Her haemoglobin level dipped to 6.5. “We did not suspect anything amiss and put her on iron tablets. We thought it was because we were not giving her adequate time,” says Sonu Juneja.
Finally, they consulted paediatric gastro-enterologist Sarath Gopalan of Pushpawati Singhania Research Institute, New Delhi. He suspected celiac disease and suggested a biopsy, the results of which were positive. Samragyi was found to be allergic to gluten, a protein present in wheat and many other grains.
Till recently, celiac disease, which causes impaired absorption and digestion of nutrients through the small intestine, was thought to be uncommon in India. But according to Dr Gopalan, who diagnoses at least two cases a week, it is more common than we think.
Ishi Khosla, Nutritionist
“Studies in India suggest that four million people in the country could be afflicted,” says Navin Dang, a doctor who runs a diagnostic centre in Hauz Khas, New Delhi. The disorder results from an immune reaction to gluten and the only way is to avoid gluten —not easy when you consider the predominantly grain-based diet of most Indians.
The problem, according to Ishi Khosla, president of the Celiac Society, a forum of doctors, nutritionists, health food makers, and people with celiac disease, is that in India, food processing machinery is the same for wheat and other products. Even a minuscule amount of gluten can trigger off a problem.
Says Neelam Mohan, paediatric gastro-enterologist at Sir Ganga Ram Hospital, New Delhi, celiac disease can result in serious problems, unlike lactose intolerance, which does not have any long-term consequence. “Celiac disease, left untreated, could lead to lymphoma of the intestine and stunted growth,” she says.
Identifying the disease
Often celiac disease goes undiagnosed for a long time and valuable growth years in childhood are lost. “I have seen cases mistakenly diagnosed as tuberculosis,” says S.K. Sarin, gastro-enterologist at G.B. Pant Hospital, New Delhi.
First is the clinical suspicion. Anaemia is a symptom. If stomach pain or cramps are consistent, then serological (blood) tests are suggested. Results are confirmed through a biopsy. “There’s a 10% chance that siblings could also have it, since this is a genetically linked disease,” says Dr Mohan. She adds that doctors have increasingly begun to identify “silent” adult celiacs.
You might think that just avoiding wheat products is the answer to managing celiac disease. But it’s not all that simple. Dr Sarin points out how more than half the foods in a typical Indian diet would be taboo for a celiac patient. Also, how do you make up for the nutritional shortfall?
Unlike Australia, Europe or the US, where food-labelling laws are very stringent, here there is no way of gauging which products are gluten-free. “I found that even vinegar and soya sauce contain gluten,” exclaims Manish Anand, whose five-year-old is affected, describing how it is next to impossible to find a gluten-free diet for the child.
The good news is that gradually, gluten-free products—flour as well as biscuits—are becoming available in India. Orgran is a popular Australian brand that is available at some supermarkets. Khosla stocks gluten-free products at her Whole Foods retail store. Meanwhile, Penguin India is bringing out a book of gluten-free recipes. Sonu Juneja says her daughter is taking to brown rice and is adapting to her new diet.
The other issue is of expense —gluten-free food is very expensive and when you consider that it has to be taken lifelong, the financial burden is heavy. Some celiac patients do not respond despite gluten- free diets (GFD). Often, lactose intolerance is the cause for the lack of response. Which means choices are narrowed further.
However, intestines do heal if the patient is kept off gluten for a prolonged period, and the damaged villi (tiny, finger-like structures that protrude from the wall of the intestine that help in absorption of nutrients) can regenerate, thereby leading to better absorption of iron and milk sugars. Dr Sarin also says that celiac patients need psychological support. Treatment is theoretically easy but compliance difficult.