Despite large prevalence, this condition remains undiagnosed in most people. In medical textbooks, it is described as a rare childhood diarrhoeal disease of the West associated with malnutrition, anaemia and growth failure.However, celiac disease is rarely diarrhoeal- in 2001, 91% cases reported had diarrhoea, today this has dropped to 37%. Those with gastro-intestinal symptoms are often dismissed as Irritable Bowel Syndrome. Presentation can be with typical digestive symptoms or atypical and even at times completely silent.
By the sheer numbers, it is certainly neither rare and India is infested with it. Nor is it only a childhood disease, with the average age of diagnosis being 45-55 years, that means a shift from childhood to midlife.
Addressing these challenges would require interventions at multiple levels. It has begun with awareness drive about celiac disease and gluten related disorders among health professionals, education institutions and food industry. Then, there is a need to facilitate timely diagnosis of the disease, finding newer and cheaper techniques. Once, the disease is diagnosed, simple way for the people is to have gluten-free diets. While, it is easy to say, but these requires identification of alternate gluten-free grains like millets and create special recipes to make gluten. Food manufacturers, hotels and restaurants have to be sensitised. The Food Authority has to work with them to provide information on gluten content. There is also need to provide know-how and gluten-free alternatives to food handlers, restaurants, food facilities and airlines. Sensitising food industry for better labelling, and full disclosure of all sources of gluten on packaging would also be needed.
For the patients, there is need to provide psychological support to families suffering from celiac disease by sharing of experience and success stories. Organise celiac clinics, case study presentations, lectures, workshops, seminars are required to take up this work. Guidelines for breast feeding and infant feeding practices have to be put in place to prevent the disease. Finally, there is need to associate with other institutions nationally and globally engaged in similar activities.
FSSAI as country’s Food Authority is partnering with Celiac Society of India (CSI) as its commitment to address key food and nutrition related issues in the country. Celiac Society of India is a non-profit organisation to create awareness on early diagnosis and management of celiac disease. The society was incorporated in May 2006. The society brings together eminent practitioners in the field of medicine, education and the food industry. CSI Board members including all its chapters, renowned Pediatricians, Neurologists, Gastroenterologists and other medical professionals have regular meetings to discuss the latest research and advancements in diagnosis, management and treatment protocol of gluten sensitivity and celiac disease.
While, the Celiac Society of India is doing good work, however this needs to expanded and strengthened so that these activities in a structured manner and create an overall ecosystem for diagnosis and treatment of celiac diseases in the country. FSSAI would partner with CSI in doing do.