The 16^th International Celiac Disease Symposium (ICDS) was held on June 21-24, 2015 in Prague, Czech Republic. Held every two years, the symposium is an opportunity for researchers around the world to share cutting-edge, new research as well as engage in dialogue with other researchers, clinicians, and patients.

Members of the National Foundation for Celiac Awareness (NFCA) team attended this year’s symposium, including Kristin Voorhees, MA, Director of Healthcare Initiatives who shared the findings from a collaborative research project with the Jefferson Celiac Center in the poster presentation “Celiac Disease Management: A Comparison Between a Celiac Center and the Community Setting.”

Over the next few weeks, we will be sharing some of the latest research findings discussed at this year’s ICDS.

The 17^th ICDS will be held in New Delhi, India in 2017 and one of the organizers of the upcoming symposium, Dr. Govind Makharia, presented information on his research into the prevalence of celiac disease in adults in India.

Prior research found that about 1% of the Indian population has celiac disease, almost entirely in Northern India. This prevalence is very similar to the prevalence in the U.S. and some other areas of the world. Dr. Makharia’s new study sought to update and further investigate the prevalence of celiac disease throughout India. The present study sampled 23,331 adults from India and found that Northern India had the highest prevalence of celiac disease (1.23%), North Eastern India had an intermediate prevalence (0.87%) and Southern India had the least prevalence (0.10%).

Interestingly, it was found that the genetic risk for celiac disease (the presence of HLA-DQ2 and/or DQ8) was not significantly different between these three groups. The prevalence of HLA DQ2 and/or DQ8 expression was found to be 38.1% in Northern India, 31.4% in North Eastern India, and 36.4% in Southern India. Dr. Makharia’s research found that the mean daily wheat intake among these three areas was statistically significant. Northern India’s average daily wheat intake was found to be 455g while North Eastern India’s was 37g and Southern India’s was 25g. This significant difference in wheat consumption correlated with the difference in celiac disease between regions, implying that diet is likely to be the basis for much of the difference.

Dr. Makharia also presented some research on the prevalence of HLA-DQ2 in populations across the Asia-Pacific Region. One particularly interesting finding from this study was that the prevalence of HLA-DQ2 in parts of China and India was found to be between 5-20%. China and India each have a population of over 1 billion (1.35 and 1.22 respectively), which means that the potential for celiac disease in these countries is enormous. These countries have a fair amount of genetically susceptible individuals and if they have wheat in their diet, they may ultimately have greater percentages of celiac disease within their populations. Dr. Makharia pointed out that the number of patients with celiac disease in Asia may eventually surpass the rest of the world.

Previously, little was known about the prevalence of celiac disease in the world outside of Europe and North America. Recent research into the global prevalence of celiac disease has proven to be very valuable. As Dr. Makharia and others have shown, there are potentially a number of factors that play into why one population has higher rates of celiac disease than others, and understanding these factors in different populations around the world will help us to understand and perhaps one day even prevent celiac disease. Research on how common celiac disease is around the world could also help to raise awareness, increase diagnoses and develop a better understanding about the severity of this disease.

This research is only possible through participation of people like you living with celiac disease, as well as your family and friends without celiac disease. Your help allows researchers to learn more about celiac disease, while information shared by your family and friends helps researchers to compare study findings to the general population. If you are interested in learning more about current and future celiac disease research, NFCA encourages you to sign up for the Beyond Celiac Research Opt-In.