A Qualitative Investigation of Thoughts About Life With Celiac Disease and Its Causes

Living with celiac disease (CD), a chronic autoimmune condition, leads to a variety of challenges in daily life for the affected individual. The aim of this study was to describe perceptions of CD from the perspective of persons living with the condition. A total of 157 free text comments from a questionnaire sent to persons in a Celiac Disease Member Association was analyzed using qualitative content analysis. The findings are presented in two categories. "Personal explanations of causes" describes the respondents' thoughts about different medical aspects of the disease and thoughts about their diagnosis and the onset of the disease. "My everyday life with the condition" describes how respondents perceive how the disease affects life on many levels: emotionally, socially, and physically. Living with CD impacts lives, and early diagnosis seems to have a calming effect and improve everyday life. Follow-up reception after the diagnosis was expressed as valuable, as questions arise during the disease trajectory. Counseling by health care personnel with specific knowledge regarding CD from diagnosis onwards seems vital, as the only available treatment is a gluten-free diet.