Experiences of managing a gluten-free diet on multiple levels of society: a qualitative study

BACKGROUND: Coeliac disease (CD) is an immune-mediated enteropathy against dietary gluten. The treatment for CD is a strict life-long gluten-free (GF) diet, which has a profound effect on a person’s life. In recent years, there has been an increase in the availability of gluten-free products. This study investigates how people with CD experience and manage a GF diet. METHODS: Semi-structured, individual interviews were conducted in different areas of Norway. The analysis was guided by Interpretative Phenomenological Analysis. Participants with CD (n = 12) varied in terms of gender, age, family composition and time since diagnosed. RESULTS: The analysis revealed challenges for a GF diet at the individual, interpersonal, community and policy levels. At the individual level, the participants explained that it took time to gain knowledge about a GF diet, and they expressed uncertainty about the healthiness of a GF diet. At the interpersonal level, the feeling of being different and the fear of gluten contamination were barriers to the enjoyment of social meals. At the community level, the participants asked for a wider selection of tastier GF products to purchase and increased knowledge about CD among those who prepare and sell GF foods. At the policy level, the participants asked for political action to make GF products more affordable. CONCLUSIONS: This study indicates that people with CD should be given information about how to manage a GF diet right after being diagnosed with CD. The food industry should be encouraged to produce healthy and tasty GF products. SUPPLEMENTARY INFORMATION: Supplementary information accompanies this paper at 10.1186/s40795-020-00390-3.