Women's Experience With Celiac Disease: A Phenomenological Study

The purpose of this qualitative study was to explore the lived experience of women who have been diagnosed with celiac disease. Celiac disease is a multisystem autoimmune disease and affects approximately 1% of the population. In addition, celiac disease is seen 1-2 times more often in women and they tend to have more severe disease and treatment burden. Quantitative research has been completed on celiac disease, but there remains a gap related to the implications of the disease from a qualitative perspective. The research tradition used for this qualitative study was phenomenology. Interviews were audio-recorded using a developed questionnaire. Saturation of the data occurred after 12 participant interviews. Following the analysis, 5 themes resulted: (a) Who am I? (b) medical aspects; (c) challenges; (d) daily living; and (e) facing the challenges. There remains a gap in the education, support, advocacy, and follow-up care of this population.