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Experiences of coeliac disease in a changing gluten‐free landscape

King, J. A., Kaplan, G. G., Godley, J.
Journal of human nutrition and dietetics 2019 v.32 no.1 pp. 72-79
adults, celiac disease, distress, experimental design, gluten, gluten-free diet, gluten-free foods, interviews, restaurants, Alberta
BACKGROUND: Coeliac disease is an autoimmune disorder triggered by the ingestion of gluten. In recent years, there has been considerable increase in the availability of gluten‐free products in North America. The present study investigated how the recent proliferation of the gluten‐free industry has affected individuals living with coeliac disease, with a primary focus on their social lives and relationships. METHODS: Interpretive phenomenology was utilised for study design and analysis. Semi‐structured interviews were conducted with 17 adults diagnosed with coeliac disease in Calgary, Alberta. Interviews were audio recorded and then transcribed for analysis. RESULTS: People living with coeliac disease experience the growth of the gluten‐free industry as a ‘double‐edged sword’. Although they are grateful for more palatable gluten‐free options, they are increasingly faced with misunderstandings about the severity of coeliac disease as a result of many noncoeliac disease individuals subscribing to the gluten‐free diet. This ‘double‐edged sword’ made certain types of social situations more easily manageable (e.g. more gluten‐free options available at restaurants), whereas others produced distress (e.g. increased risk of inadvertently consuming gluten). Participants also felt they may be perceived or even perceived themselves differently (e.g. felt high maintenance). To help mitigate these social ramifications of following the gluten‐free diet, participants utilised various strategies. CONCLUSIONS: The sole medical recommendation of a gluten‐free diet fails to acknowledge the ongoing difficulties those with coeliac disease can endure in the current gluten‐free landscape. Recommendations beyond the gluten‐free diet are advisable to alleviate many of the indirect burdens revealed in the present study.