India might be a perfect model to understand the genetics of Celiac disease: ICDS 2017 symposium

(L to R)-Prof. Bana Jabri, Prof. Carlo Catassi, Dr Govind Makharaia and Dr B S Ramakrishna


  • 17th International Celiac Disease Symposium 2017 concludes with a focus on prevalence of the disease in India
  • Lack of awareness a major setback for positive results in diagnosing and treating this condition in India

In what can probably be called the largest and best-known meeting in the world for Celiac Disease involving clinical scientists, basic scientists, nutritionists, patient forums, and the industry, the 17th International Celiac Disease Symposium (ICDS 2017) was held for the first time in Asia between 8th and 10th September 2017. The recently concluded symposium was organized by the All India Institute of Medical Sciences (AIIMS) in association with the Indian Society of Gastroenterology (ISG), International Society for the Study of Celiac Disease (ISSCD), and the Asia-Pacific Association of Gastroenterology (APAGE).

ICDS discussed and explored the best ways to address the challenges faced by patients with Celiac Disease and the way forward. The highlights of this event included keynote lectures, theme-based symposia, and debates as also sessions reflecting joint interests and needs of scientists, clinicians, nutritionists, and patients.

What is Celiac Disease?

Biopsy of small bowel showing celiac disease manifested by blunting of villi, crypt hyperplasia, and lymphocyte infiltration of crypts, consistent with Marsh classification III. Released into public domain on permission of patient. credits: Wikimedia commons

Celiac Disease is a chronic disorder induced by gluten proteins present in wheat, barley, and rye. Celiac disease is an autoimmune disease that occurs because of ingestion of a protein, called gluten, which is present in the cereals – wheat and barley. In these patients, the gluten protein is not digested completely and that leads to damage to the small intestinal mucosa (where food is absorbed). With the damage of small intestine, the food is not absorbed and thus, these patients fail to grow in height and weight, develop chronic diarrhea, anemia (lack of blood), and weakness of bones.

Once thought to be a rare disease restricted to Western Europe, it is now a global disease affecting approximately 37 million to 69 million individuals. In India, about 6 to 8 million Indians are estimated to live with Celiac Disease.

While there is a large pool of patients with this disease in India, until now, only a fraction of them have been diagnosed. Further, the prevalence of celiac disease in the north Indian community is 1 in 96.

This result was based on a study conducted by AIIMS (Makharia GK, et al) in 2011 including 2879 subjects revealing that 1 in 100 have celiac disease (1.04%). Later in a country-wide study (multi-center) including 23,000 apparently healthy subjects, it was observed that 0.6% (1 in 160) had celiac disease, being more common in Northern part of India (1.2%; 1 in 90), and North-Eastern part of India (0.8%; 1 in 130) and much less common in Southern part of India (0.1%; 1 in 1000).

Speaking about this, Dr Govind Makharia, Organizing Chairman and Professor, Department of Gastroenterology and Human Nutrition, AllMS, New Delhi, said, “Celiac Disease is now at the center-stage of the scientific world. There is an urgent need for epidemiological to estimate prevalence of this disease in different regions of India. If there is a real difference in the prevalence of Celiac Disease in northern and southern parts of India, India might prove to be a model to understand the genetics of this disease and its ethnic variations.

While the number of patients with Celiac Disease is small at present in India, the absolute number of patients is rising day after day. As awareness about the disease increases, there is a likelihood of an exponential increase in the number of patients with Celiac Disease and hence the demand of a Gluten Free Diet (GFD) is likely to increase as well. However, on the flip side, maintenance of GFD is very demanding and requires considerable amount of motivation by the patient and the family. There is thus a need to also develop alterative/adjuvant therapies for the patients with celiac disease and ICDS 2017 will surely provide some insights on this and more.”

Adding further, Chris J Mulder, Hepatogastroenterologist and Head of Department, VU Medical Center, Amsterdam, Netherlands, said, “Wheat consumption, particularly in northern India, is huge. Compared to 25 g in Western Europe and about 17 g in countries like Italy, India consumes about 30-40 g of wheat daily. This could be a possible reason for the higher incidence of Celiac Disease in India. About 50 g of wheat can induce villous atrophy. Gluten can gradually erode the villi in the small intestine and prohibit the body from absorbing nutrients from food. There is also a lack of awareness about this disease due to which it remains undiagnosed for the major part.”

Celiac Disease can be attributed to genetic and environmental factors as well as diet. There are many highly sensitive and specific serological tests, anti-endomysial antibody and anti-tissue transglutaminase antibody assays, available today which can help in the detection of this condition.

Successful clinical trials aiming at the control of the immune-pathogenesis of celiac disease have also been conducted. However, what is alarming is that currently, only those with the most typical manifestations are checked and ultimately diagnosed to have the disease. Screening programmes within populations indicate that celiac disease is under-diagnosed and what is clinically detected represents only the tip of the iceberg.

Lifelong and complete avoidance of gluten in the diet is the key to preventing Celiac Disease.

Food rich in Gluten- Wheat-based products like Chappathi, Pasta, Bread etc.

Successful management of Celiac Disease requires a team approach, including patients, families, physicians, dietitian, and patient support groups.  After a diagnosis is made, all the patients should be referred to a dietician for nutritional assessment, to be followed up every 3 months.

Some other approaches at the individual level include meal planning, and assistance with the social and emotional adaptation to the gluten-free lifestyle. At a larger level, industries can be motivated for large-scale production of gluten-free food products ranging from snacks, flour, sweets, ice creams and ready-to-eat packets.

Encouragement should also be provided for making home-made food from naturally occurring gluten-free items. Although the absolute number of patients with Celiac Disease at present is not very large, this number is expected to increase over next few years/decades. It is thus appropriate that medical community define the extent of the problem and get prepared to handle impending epidemic of Celiac Disease in India and across the world.

ICDS 2017 also addressed the ways towards treatment and management of the disease including creating increased awareness amongst health care professionals and the general public about the disease, team-based management of patients with celiac disease, proper counseling and supervision of patients, training of dieticians in the management of patients with celiac disease, industrial production of reliable and affordable gluten-free food, and food labeling for gluten contents.

Dr Govind Makharia (centre), Organizing Chairman, International Celiac Disease Symposium along with other doctors at ICDS 2017