No chapattis

Satnam Singh detests wheat chapattis. On being force-fed, he shouts and cries loud. Satnam is not throwing tantrums ; he is also not suffering from anorexia. In fact, this four-year old from a small village in Punjab's Ambala district associates wheat chapattis with acute stomach aches, followed by vomiting and acute diarrhoea. His parents, who earlier thought this to be a ploy to avoid food, now know that their son is suffers from celiac or wheat allergy.

The disease is prevalent in the northern parts of the country, but people at large remain ignorant about it. According to B R Thapa, additional professor at advanced paediatric centre (apc), Post Graduate Institute of Medial Education and Research (pgimer), Chandigarh , "Even many doctors do not suspect the disease on first inspection. So on most occasions, celiac remains undiagnosed and unreported."

Thapa heads the celiac clinic at apc, that receives a large number of patients from Punjab, Haryana, Rajasthan, Himachal Pradesh and Jammu and Kashmir, every Wedensday and Saturday. Over 1,000 celiac patients regularly come for follow-ups and another 10-15 sufferers are added to this list, every month.
The disease Celiac is caused by permanent hypersensitivity to gluten -- a by-product of wheat. It is also known as gluten allergy, gluten sensitive enteropathy, and Gee Herter's disease. The disease was first reported in 1888, but its direct link with wheat got established only during World War ii. In India, the disease was first reported in 1966 in New Delhi. Since then its incidence has increased and experts say that celiac is common in north India -- the wheat belt of the country.

Thapa explains how the disease is caused: "Wheat contains gluten, which breaks down into glutenin and gliadin and the latter is toxic to celiac patients. Similarly rye, barley and oat produce prolamine that is toxic for celiac patients." "Villi, the finger like structures in the small intestine, which help in digestion, are broken down in celiac patients," he adds. But ruptured villi can also be due to malnutrition, stomach infection or milk allergy; so several clinical tests are necessary to diagnose if a patient is actually suffering from celiac.

Broken villi in celiac patients is actually a result of genetic disorder. Explains Thapa, "Celiac patients have a problem with their chromosome number six that makes them allergic to gliadin. But this problem remains dormant unless they are exposed to wheat. Upon such exposure, some patients react immediately, while others show symptoms very late in life."

Although celiac is a genetic disorder, siblings of patients are not necessarily allergic to wheat. In fact, a research conducted at pgimer shows that there is only a 20 per cent chance of siblings of patients contracting celiac. But in case of identical twins, there is a 75 per cent chance of both children having the disease.
It catches them young Celiac manifests first in children aged 3-5 years. Full symptoms appear when they are 7-8 years of age. The three most common symptoms are chronic diarrhoea, stunted growth, and anaemia; 80 per cent of children exhibit them. Others suffer from constipation, abdominal distension and rickets. "It is not necessary that all children exhibit similar symptoms and that makes diagnosis really tough. In many cases a child continues to suffer for years without the parents realising that this is because of wheat allergy," says Thapa.

Take the case of Satnam. He became allergic to wheat when he was just a year old. But no body could pinpoint the disease. "I kept running after doctors in Ambala for two years but nobody could diagnose the malady. I am a daily wager and have spent close to Rs 35,000 on medicines. It is only after I came to pgimer that my son was diagnosed as celiac child," says Baljit Singh, father of Satnam. Singh now travels five hours a day (one way) to bring his son to pgimer for follow-up treatment. The total cost for diagnosis and treatment is Rs 1,000.

Somewhat similar is the case of Salil Ranga, a seven-year old boy from Narnaul in Haryana. He suffered constant stomachaches and was even hospitalised for 13 days at the Medical College, Rohtak. "Doctors at the Medical College conducted a number of tests on Salil, but they could not pinpoint the problem. Finally they referred my son to pgimer," says Sunil Kumar Ranga, Salil's father.

Gracy's stroke of luck
While Satnam and Salil had to suffer for years before their ailment could be diagnosed, 16-month Gracy Singh was a shade luckier. She was diagnosed with celiac when she was 10 months old. "Gracy's health deteriorated immediately after I started giving her wheat. She had continuous diarrhoea and lost 3-4 kilogrammes (kg). She would cry all night because of stomach ache. Then someone told us about pgimer and we brought her here. After treatment commenced at pgimer, I have completely stopped giving Gracy wheat diet and within 20 days she has gained 600 grammes," says Gracy's mother, a resident of Chamba town in Himachal Pradesh.

But Gracy is a rare case of a celiac patient getting diagnosed in time. Salil's father narrates a horrific story: "Sometime back a 12-year-old-girl was wrongly diagnosed as suffering from milk allergy while she was actually a celiac child. Milk was taken off from her diet, while wheat continued. Her health deteriorated and she was brought to pgimer in a critical condition. Her bones had become stiff and she could barely move. But as soon as wheat was withdrawn from her diet, her condition showed distinct improvement."

A common feature among most celiac patients is that their growth is stunted at less than 6 centimetres (cm) per year. Celiac children are weak, lethargic and loners. Baljit Singh reminisces that Satnam could barely sit and would never play with his elder brother and sister. But within a week of withdrawing wheat from his diet, he started mixing around with other children. Salil has also started going to the playground, instead of sitting at home and watching television, while little Gracy has started to smile and babble.

Prevention is the only cure
The initial response of the parents is shock and disbelief. "I could not believe that wheat can be allergic. It is our staple diet and if we stop eating it, what other option do we have?" says Baljit Singh. Thapa says that most parents react this way, but counselling helps them understand that their children are normal and can eat cereals such as rice, maize and bajra as well as pulses, vegetables and fruits.

Parents' confidence starts to grow once their children start showing slight improvement. "I brought Salil to pgimer in October 2001, when he was five years old and weighed only 14.2 kg. His height then was 95 cms. But after the withdrawal of wheat from his diet, he started to gain both weight and height. By January 2002, his weight increased to 15 kgs, while his height grew to 97 cms. Now he weights 19.2 kg and is 113 cms tall,' says Ranga.

Counselling is an important part of treatment. Thapa says that celiac patients can be totally cured if wheat is completely withdrawn from their diet. For the benefit of parents, the pgimer has prepared a diet chart (in Hindi, English and Punjabi), which describes the kind of food celiac children can or cannot consume. "The first milestone for both doctors and the patients is when the latter become cheerful and alert and their appetite increases. This can happen within a few weeks of wheat withdrawal. It is after this milestone that parents start to believe in us," says Thapa.

Both parents and patients have to be very careful throughout the course of treatment. The patient should always have home made food. In most cases that is a very tough job. Rues Salil's mother, "My son loves having kurkure, (a wheat snack) but I cannot buy him that." "We have informed Salil's school authorities about his diet pattern. There is also a small flourmill at home for Salil where I grind maize, bajra or rice. We have even gone to the extent of having separate cooking vessels for Salil. His siblings also avoid eating food not made at home," she adds.

Thapa explains why such meticulous attention to food is necessary: "In India food laws are very weak and there is hardly any concept of labelling. Food adulteration is also commonplace. We also tell children not to consume soft drinks, as these are barley-based," says Thapa. Infants cannot have baby food such as cerelac, as it is also wheat-based.

Some institutions are beginning to understand the anguish of the parents of celiac patients and are beginning to work towards providing food options for such children. Their aim is to never let celiac patinets feel that they are not normal. The Chandigarh-based Food Crafts Institute, for instance, prepares bakery and confectionary items for celiac children on special order. Some parents also try and look for gluten-free wheat. But that is not easily available in India and importing it is a very expensive proportion. As Ranga puts it, "The government will do us a big favour if it can make gluten-free wheat available to our children."