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.

Impact of Corona Virus Disease 2019 pandemic on adherence to gluten-free diet in Indian patients with celiac disease.

AIMS: Lockdown and restricted mobility due to the pandemic of corona virus disease  2019 (COVID-19) has severely affected the continuity of healthcare of patients with acute and chronic diseases. We evaluated the impact of COVID-19 on the adherence to gluten-free diet (GFD), symptom control, and quality of life (QOL) in patients with celiac disease (CeD). METHODS: A questionnaire, consisting of both ad-hoc and validated questions, was created after review of literature, group discussions, and expert meetings. Standardized questionnaires namely CeD adherence test (CDAT), celiac symptom index score, and CeD-related QOL were used. The web-based questionnaire was sent to 3130 patients via social media and 452 responses (14.4%) were received. Also, additional 68 patients (not available on any social media application) were interviewed telephonically by a trained dietitian. RESULTS: Overall, 505 patients (females: 318; mean age: 24.1±14.2 years) were included. While only 6.7% (n = 34) had poor compliance to GFD (CDAT > 17) before COVID-19 pandemic, it almost doubled to 12.6% (n = 64) during the COVID-19 pandemic times (p = 0.02). Furthermore, 4.9% (n = 25) of patients were diagnosed contacting  COVID-19. Interestingly, 73.2% (n = 370) patients preferred online appointment than physical appointment. Most common difficulties faced during lockdown period were high delivery charges for getting gluten-free (GF) food at home (54.4%), increased prices of regular GF food (43.1%), and travelling long distance to arrange GF food (44.9%). CONCLUSIONS: The COVID-19 pandemic has substantially affected the adherence, symptom control, and QOL in patients with CeD, attributable to unavailability, shortage of money, and heightened cost of GF food. The pandemic has offered an opportunity to practice teleconsultation approach for patients with CeD.