Lived Experiences of Children with Celiac Disease

Abstract

Background: Children in India who have been diagnosed with celiac disease deal with a variety of challenges and difficulties as a result of their condition. Understanding their experiences is important to help the patients adapt better to the demands of celiac disease and gluten-free diet. Methods: The present study has used a constructivism paradigm as a study design. Participants were recruited through purposive sampling. In-depth telephonic interviews were conducted with 10 children with celiac disease. Thematic analysis was used to analyze the interview data. Results: The main themes and sub-themes that emerged from the data were emotional responses (the feeling of deprivation, the feeling of being different from others, the novelty of gluten-free diet leading to excitement), physical health impact (getting tired easily, delayed growth), social constraints (social limitations brought on by celiac disease, peer pressure to eat gluten, and non-acceptance of celiac disease by others), future concerns (uncertainty about the future, improved physical health, celiac disease cure, dependency on others), navigating dietary changes (fear of cross-contamination, food restrictions caused by celiac disease, non-availability of gluten-free food, and limited food options outside the home), coping strategies, and management of celiac disease (eat home-cooked meals, receiving support from family, and friends, adhering to gluten-free diet). Conclusion: Governmental organizations and experts in mental health must acknowledge the needs of Indian children with celiac disease. The need of the hour is to improve gluten-free product labelling and raise awareness of celiac disease.