Times of India
08 September 2011
By, Umesh Isalkar
Pune, India

Awareness Needs To Be Created Among Medical Practitioners, Patients: Experts
There are at present 100 people suffering from celiac disease in Pune who are on glutenfree diet. The first and only celiac registry which will collate and compile a database of patients suffering from celiac disease or gluten resistance in Maharashtra will be launched in Pune on September 13. Celiac disease is a genetic disorder where the body has intolerance to the protein called gluten which is found in wheat, rye, barley and oats.

“Last year, we diagnosed more than 40 patients in the age group up to 15 years suffering from celiac disease. There are a total 100 celiac patients including children and adults in Pune who are presently on gluten–free diet,”paediatric gastroenterologist and hepatologist Vishnu D Biradar told TOI on Monday. Biradar is attached with Deenanath Mangeshkar Hospital (DMH) and Aditya Birla Memorial Hospital.

Citing the objective of the registry, Biradar said, “The celiac registry is being launched with the objective of generating awareness about celiac disease among physicians and to coordinate patient education programmes. All private and government hospitals in Maharashtra will register their respective celiac disease patient with this registry.”The registry will be located at DMH, he added.

Department of paediatrics and gastroenterology, DMH along with Indian Academy of Paediatrics branch of Paediatric Gastroenterology, Pune branch has taken the initiative.

“The disease doesn’t require any medicine to treat it. All one has to do is to avoid gluten containing food like wheat, barley, rye and oat. Among these grains, wheat constitutes a major chunk of our diet. Hence avoiding products like chapati, biscuits, chocolates, ice–cream, bread, cake, mithai, etc forms a major initiative to avoid bad consequences,”Biradar said.

The disease was not that common till recently. “But we have been diagnosing more cases now due to newer diagnostic modalities. Besides, the presence of paediatric gastroentrologist in the city has paved the way for diagnosis of newer cases,”said Biradar.

There is a big concern about the disease as it is not being diagnosed due to low awareness among paediatricians, he added. The diagnosis is done by doing an endoscopy and a small intestinal biopsy. Serological tests TTG, IgA are done for screening purposes. At present, there are only two paediatric gastroenterologist in Maharashra and both practice in Pune.

Lectures on gluten–free diet, recipes, and social issues which celiac patients face in day to day life will be held at DMH on the launch day of the registry. Gluten–free products are not available in Pune. “We are making an effort to make it available in as many shops as we can,”Biradar said

Senior gastroenterologist Parimal Lawate said “In the West, one in 100 people are glutensensitive. The prevalence of celiac disease is not much in our country. However, compared with adults, it is relatively common in children. Setting up a registry will help us understand its prevalence and create awareness.”

Sharing the view, paediatric gastroenterologist Ashish Bavdekar said, “As per different studies, the reported prevalence of celiac disease is one in 100 and one in 200 in northern part of India. We do not know its prevalence in other parts of the country. It is only in the last few years that we are picking up the disease among our state’s population. In the last five years, the blood test required for diagnosis of celiac disease has been made easily available in Maharashtra.”Bavdekar is also the president of the National Chapter of Paediatric Gastroenterology.

“The first and foremost aim of setting up the celiac registry is to create awareness about the disease and educate the people about simple dietary changes. Besides, setting up a registry will help us form a support group,”said senior gastroenterologist Harshal Gadhikar, head of the gastroenterology department at DMH.

Factsheet

• Celiac disease is a systemic autoimmune syndrome involving a gluten–induced chronic inflammation of the small bowel mucosa, with extensive short and long–term negative health consequences if untreated including GI cancer
• Left untreated, people with celiac disease can develop further complications such as vitamin deficiencies, other autoimmune diseases, osteoporosis, thyroid disease, and cancer
• Celiac disease is characterised by damage to the mucosal lining of the small intestine, and is responsible for the malabsorption of nutrients resulting in malnutrition. It is also linked to skin blisters (dermatitis herpetiformis) and gall bladder disease
• Celiac disease is not age–dependent and may become active at any age. It is often misdiagnosed as irritable bowel syndrome (IBS) or stress
• Currently the only treatment for celiac disease is a strict, 100% gluten–free diet
• Traveling with celiac disease can be especially difficult since you are away from your usual sources of gluten–free food. The number of gluten–free resources can vary greatly by geographic location so advanced planning is recommended
• 2.2 million children under five years of age probably have undiagnosed celiac disease in India
• Celiac disease constitutes 4% of all childhood diarrheal mortality

Symptoms of Celiac Disease in Children

• Chronic diarrhea
• Short stature
• Not gaining weight and height (failure to thrive)
• Iron deficiency and anemia
• Neurological symptoms like seizure disorders
• Associated autoimmune disorder like diabetes, thyroid disorder etc

Role of Support Group

• Studies have shown that one reason why some celiac patients can't stay glutenfree is that they don't have a support group to encourage and help them. Whether new to the diet and struggling, or a veteran with tips to share, a good support group can provide emotional and practical benefits
• Meeting others with celiac disease that are following the gluten–free diet can help feel less alone by providing a safe and welcoming environment, filled with compassion and understanding – not to mention gluten–free refreshments. Imagine how nice it would be to have a large circle of gluten–free friends and acquaintances for pot–luck dinners, supper clubs, and kids' parties