Trend or Treatment? Stigma, Social Challenges, and the Burdens of Managing Celiac Disease

Abstract

Celiac disease is an autoimmune disease estimated to affect about 1% of the global population (Biesiekierski et al., 2014). It is managed only through strict lifelong adherence to a gluten free diet. However, this diet also commonly exists as a trend, making the existence and management of celiac disease perceptible to low social legitimacy (Moore 2014). Broadly, research on celiac disease often takes a biomedical approach or fails to acknowledge the role of the social context and its influence on lived experiences of managing celiac disease. Through a qualitative analysis, using semi-structured interviews and observation within a gluten free support group, this research seeks to understand how the broader popularity of the gluten free diet influences the lived experiences, social challenges, and burdens of illness experienced by people with celiac disease in their everyday lives. It finds that irrespective of individual trend dieters, low social legitimacy more broadly magnifies the social challenges faced by people with celiac disease in four key areas: biographical disruption, and the management of cognitive, economic, and relational burdens.