Robin Kapoor is 14 but almost a foot shorter than his friends. His parents were so worried about their little boy that they considered giving his growth a boost by using hormone therapy.
Raghav Ahuja, 5, had uncontrolled diabetes that was not responding to medication.
Tejas Mehra Gupta’s problem was very different. The 4-year-old was so severely anaemic that it made him pale and listless.
All three had widely different symptoms for the same condition — Celiac disease.
Celiac disease is a digestive condition triggered by hypersensitivity to a protein called gluten that is found in wheat, barley or rye.
Eating foods with gluten causes an immune reaction in the small intestine that can damage the lining of the intestine and lower absorption of essential nutrients that leads to vitamin deficiencies and stunting.
“Unlike wheat allergy, Celiac Disease is a permanent adverse reaction to gluten that requires lifelong restriction to gluten. Wheat allergy, on the other hand, only causes symptoms for a short time after consumption wheat. People usually outgrow wheat allergy with time,”says nutritionist Ishi Khosla, who gets so many queries on the condition that she has begun compiling a book on gluten-free foods.
Fairly common in the West — 1 in 100 people in Europe and 1 in 133 people in the US — Celiac Disease is more common in north India than in the southern states.
“It is far more common in north India, with a small study at PGI Chandigarh showing a prevalence rate of 1 in 310 in Punjab,” says Khosla.
The Punjab data, she says, is likely to be an underestimation because many people remain undiagnosed.
Not everyone presents with the symptoms, and those who do, may have non-specific symptoms.
“Diagnosis is done using with serological markers (blood tests) such as antigliadin antibodies (AGA) or the IgA-class AEA, but since these have 95 per cent accuracy, an endoscopy should be one from confirmation,” says Dr Neelam Mohan, a consultant paediatric gastroenterologist at Ganga Ram Hospital.
“Correct diagnosis is imperative as celiac disease may predispose people to other disorders as type-1 diabetes mellitus, autoimmune liver disease, thyroid disorders, pulmonary diseases such as asthma; ulcerative colitis, Crohn’s Disease as well as an increased risk of cancer of the intestine,” says Dr Mohan.
Mohan is among a group of nutritionists, dieticians, doctors, nurses and patients who have come together to set up the Celiac Society of Delhi to increase awareness and provide support to patients and their families.
Celiac disease has no cure except removing gluten from the diet and taking vitamin and mineral supplements to help correct deficiencies.