Celiac Disease: One of the most under-diagnosed, misunderstood ailments

Vidya Krishnan Posted: Apr 03, 2009 at 0345 hrs IST

New Delhi: Deepak Sikand had lived with Celiac Disease for 45 years before it was diagnosed 13 years ago. He was diagnosed with the disease purely by chance after years of health problems and misdiagnosis, when a doctor researching Celiac Disease came across his case and suggested a biopsy and blood test.

Sure enough, the tests came back positive. “By the time I knew I had Celiac Disease, I was very weak and had osteoporosis due to bone degeneration. I could not manage my condition because I never knew what I was suffering from. Now, with a healthy gluten-free diet, I am free of constant illness,” Sikand

told Newsline.

From a severely underweight, frail and exhausted 45-year-old to a healthy 58-year-old — Sikand’s transformation has been remarkable. He now hopes people learn from his experience.

Celiac Disease is a digestive problem that damages the small intestine and interferes with the absorption of food. Though commonly misunderstood as a childhood disease, Celiac Disease is an auto-immune disorder of the small intestine that occurs in genetically predisposed people of all ages.

People who have Celiac Disease cannot tolerate gluten, which is found in wheat, rye and barley. The treatment for this disease is a life-long exclusion of gluten from diet, under professional supervision.

Experts maintain Celiac Disease is one of the most under-diagnosed diseases, mainly because of lack of awareness among doctors. “In medical textbooks, it is mentioned as a rare diarrhoeal disease only in children. Doctors have heard of it but do not connect it to the symptoms. It is also usually misunderstood as a childhood disease. Due to lot more research, we now know that Celiac Disease can be asymptomatic also. A person does not necessarily need to have diarrhoea to be suffering from Celiac Disease,” Ishi Khosla, clinical nutritionist and a member of the Celiac Society of Delhi, said.

The society is currently conducting an awareness campaign for doctors in the Capital for better diagnosis and treatment of the disease.

Dr Anupam Sibal, another member of the Celiac Society of Delhi, said screening for Celiac Disease should be carried out if symptoms like diarrhoea, anaemia and weight loss persist. “We need better screening amongst children and for that doctors need to connect the dots between the symptoms and the disease. In India, Celiac Disease is still considered to be a western disease. It is understandable that asymptomatic diseases are difficult to diagnose but even in cases where children show classic symptoms of growth failure, constipation, etc, doctors do not screen them for Celiac Disease,” Sibal said.

DIAGNOSTIC CHALLENGE

* Celiac Disease was once considered a “wasting” disease specific to early childhood

* Studies have shown that majority of patients do not have “classic” Celiac Disease but “silent” presentations. There are approximately six silent or asymptomatic cases for each symptomatic case

* The symptoms of Celiac Disease are changing and cover a large spectrum of disorders. Silent or asymptomatic cases have no or minimal gastro-intestinal symptoms but suffer from related auto-immune diseases

* Most patients are diagnosed between the ages of 40 to 60 years and show symptoms for approximately nine years before diagnosis

* Known as a “diarrhoeal disease” until 1991, when studies showed that 91 per cent of people diagnosed with Celiac Disease had diarrhoea. Since 2001, this has dropped to 37 per cent

* Symptoms can wax and wane over a long period of time

* A gluten-free diet is the only prescription

 

 

 

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