Patterns of practice in the diagnosis, dietary counselling and follow-up of patients with celiac disease— A patient-based survey

Background The pattern of practice regarding the diagnosis, dietary counselling and follow-up of patients with celiac disease (CeD) varies between practice to practice. Methods A web-based questionnaire based on review of literature, group discussions and expert group meetings was developed to understand the practice of CeD in India. The questionnaire was administered through social media (WhatsApp) to 18 Indian celiac support groups comprising 2980 patients with CeD. Results Overall, 970 (32.5%) patients responded to the questionnaire (median age: 21 years; females 63.9%). While 679 (71.1%) patients were diagnosed based on a combination of serology and biopsy, 214 (22.4%) were diagnosed based on serology alone. After diagnosis, 875 (91%) patients were counselled initially by physician and only 585 (61%) were referred to a dietician for dietary counselling. In a majority of cases, the time spent by doctors and dietitians during first counselling was between 10 and 20 minutes only. After first counselling, 191 (20%) and 355 (37.3%) patients did not re-visit the physician and the dietitian, respectively. Among those who followed up, structured follow-up was conducted in only 515 (53.8%) patients. Overall, 232 (24.3%) patients were self-monitoring their serological parameters, while 495 (51.8%) patients did not receive a formal assessment of dietary adherence during follow-up. Conclusion The practice of diagnosis, dietary counselling and follow-up of patients with CeD in India is not as per standard guidelines . Most of the patients are not referred to a dietitian. There is a need for reinforcement of guidelines for proper care and management of patients with CeD.