A 65-year-old man living in Delhi had been complaining of excessive fatigue. He had lost his appetite and was tiring easily. He went to a few doctors who weren’t able to detect the problem; the family then took him to a city-based nutritionist who had been working in the area of gluten intolerance. A few medical investigations later, he was diagnosed with an advanced stage of adenocarcinoma, a type of glandular cancer in his stomach and upper duodenum which had spread, and given six months to live.
The cancer was the result of celiac disease, arising out of gluten intolerance which had gone undiagnosed for a long time.
Food for thought : Over the last decade, product labels in the West have begun carrying information on gluten too
Often dismissed as another form of food intolerance (like lactose), celiac disease goes undiagnosed in 97% of cases globally, according to a study published in Celiac Disease: A Hidden Epidemic by Peter Green and Rory Jones (2010).
What is celiac disease?
It is a condition that arises from gluten intolerance from wheat (see box for substances containing gluten) in which the lining of the small intestine is damaged and it cannot absorb nutrients properly, leading to malnourishment.
There may be other instances where the body rejects certain proteins present in wheat, but celiac is the most common. Although gluten intolerance does not necessarily mean you have celiac disease, all those who have celiac disease are gluten intolerant. “Gluten consumption for a person with celiac disease leads to inflammatory damage to the villi, the part of intestines that absorb nutrients, which in turn leads to malabsorption,” says Ishi Khosla, a Delhi-based nutritionist and author of Is Wheat Killing You?.
Adds K.V. Radhakrishna, scientist and paediatrician at the Institute of Nutrition, Hyderabad, “There has been no large-scale study in India and we estimate that of every one case reported, there are 10 that go unreported.” The disease manifests in a variety of ways ranging from weight loss, stunted growth in children, lethargy and fatigue to gastrointestinal problems (such as anorexia, diarrhoea, constipation, irritable bowel syndrome, cancer and colitis), psychiatric (attention deficit hyperactivity disorder, schizophrenia), neurological (memory impairment, epilepsy), reproductory (infertility, impotency, recurrent miscarriages) and renal problems, adds Dr Radhakrishna.
Awareness regarding the disease is slowly spreading, says Khosla, whose book was the outcome of a 14-year struggle involving her son, who was diagnosed with the disease in 2001. “We consulted some of the biggest doctors in the country, and nobody thought of celiac, although I was always insistent that I suspected this to be gluten intolerance because of his prolonged anaemia, low levels of concentration, fatigue and irritability. I being a nutritionist was well aware of what I was feeding him (which is also what I was feeding my other child), and all my suggestions about it being celiac were dismissed. Doctors think mothers are paranoid about their children’s appetites. Within 15 days of stopping his wheat intake, I got a call from his teacher saying he had started concentrating in class,” says Khosla. “Stopping gluten was instantly effective; it is the only way to cure celiac. The villi recover and start absorbing nutrients like they are supposed to,” she adds.
The issue of gluten intolerance has slowly been crawling out of the woodwork in medical circles, says Khosla. For instance, the Indian Council of Medical Research (ICMR) last month declared it a topic of urgent focus, and is proposing three community-based studies to find out about the prevalence of celiac in the country. When contacted, ICMR said it was still planning the studies.
Although acknowledgement in medical circles is an encouraging sign, the road to gluten-free living requires additional support from the consumer and food packaging industries. In the West, the last 10 years have seen revolutionary change in the way products are packaged. While earlier they concentrated on calories, the packaging now labels foods on trans-fats, glycaemic index and gluten. There are also restaurants that may serve gluten-free meals, such as New Zealand-based pizza chain Hell’s Pizza, that has recently opened an outlet in Delhi’s Greater Kailash-1. “A gluten-free life involves some strict lifestyle management, including not having gluten products at home (family members who want to consume it must do it outside). Also remember that not just wheat but all products containing wheat, including beer, and even dressings like soya, teriyaki and types of herbal tea containing rye of malt or barley extract, must be avoided,” says Mumbai-based Vishakha Shivdasani, a consultant with Breach Candy hospital specializing in nutrition.
Adults may have a tough time dealing with it, but for children too, every birthday party and outing means keeping away from cakes and cookies. Doctors say some innovative cooking and planning can help. There is life beyond gluten, and there certainly is life outsideof celiac.
Products with gluten*
Wheat, semolina, barley, oats, couscous, rye, beer, soya sauce, teriyaki dressing, herbal teas containing malt/barley extracts
Rice, corn, maize, cornmeal, sorghum (‘jowar’), chestnut flour, quinoa, carob flour, wild rice, millets (‘bajra’, ‘ragi’), buckwheat (‘kuttu’) amaranth, teff, sago (‘sabudana’)
* This is not an exhaustive list.