Coeliac disease: the path to diagnosis and the reality of living with the disease

Background Coeliac disease (CD) is an under-diagnosed and often misunderstood disease, yet is one of the most common food intolerance disorders. The only treatment available to prevent the health impacts of CD is a lifelong, strict gluten-free diet (GFD). There are few studies that explore the experiences of diagnosis and the everyday experiences of living with this chronic condition. Methods Utilising a qualitative study design, and purposive sampling, the present study describes the experiences of 10 women with coeliac disease in Victoria, Australia. Individual interviews were conducted with women aged between 31 and 60years who had been diagnosed with CD for at least 2years. Results A thematic analysis of the interview transcripts highlighted a number of issues for those living with the disease. Reactions to diagnosis, transition to a GFD and the changes needed to live with CD are discussed. Conclusions A range of recommendations including the need to increase CD awareness and education and further research on the impacts of living with the disease are made.