The adolescent celiac experience: a holistic perspective on self-care among the “invisible” segment of society

PURPOSE: Strict adherence to a gluten-free diet, combined with the developmental needs of adolescence, can profoundly impact the lives of adolescents with celiac disease. This study aims to explore the life experiences of such individuals, a population often overlooked in society. MATERIALS AND METHODS: The study utilized Interpretative Phenomenological Analysis (IPA) in semi-structured interviews with 14 adolescents (11 females and 3 males) aged 14-19 years. RESULTS: Four experiential themes were identified: (1) The Role of Celiac Disease in Life Dimensions; (2) Strategies for Self-Care Maintenance; (3) The Role of Support Systems in Facilitating Self-Care; and (4) Challenges for Sustaining Self-Care Maintenance. CONCLUSION: The current findings indicated that the disease impacts not only physical health but also social and emotional well-being, as well as academic and career aspirations. Social support emerged as a crucial factor in promoting effective self-care, whereas experiences of discrimination presented significant barriers to its maintenance.