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Gluten free diet (GFD) for the treatment of celiac disease (CD) remains a lifelong challenge for patients and their parents in India. There is little knowledge available about how these patients experience and cope with their dietary needs in India. Aims: (i) To assess the status of gluten free diet and problems faced while managing GFD. (ii) To get an incite about their perceptions and concerns. Study design: Cross-sectional descriptive internet-based survey. Materials and methods: A predesigned semistructured questionnaire was prepared and mailed to members of ‘zero gluten’ on Facebook; an internet-based social support group for Indian CD patients, who were on GFD for a variable period of time. Those who decided to participate returned the filled questionnaire along with consent, which were analyzed. Results: Out of 120 members, 32 filled the questionnaire and returned back. These computer literate CD patients were from different Northern states of India. Age ranged from 3 to 36 years with mean age 20.75 years. Mean duration of GFD was 3 years and average age at diagnosis was 13.7 years. Knowledge about possible options in GFD was limited. Branded GF products were in demand; 71.9% were buying them. Follow-up was poor and involvement of dieticians while managing GFD was rare. Their major concerns were professional needs, transmission to kids, marriage and peer pressure. Conclusion: Managing GFD in India is difficult; help of trained dieticians, regular follow-up and psychological support is needed to sustain these dietary changes for life.

journal of postgraduate medicine, education and research

Gluten Free Diet, Perceptions and Concerns of People Living with Celiac Disease in India: Internet-based Survey of Members of ‘Zero Gluten’ on Facebook