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Qualitative Health Research
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*Celiac Disease
*Child Mental Health
*Diets
*Teen Development
*Teen Mental Health
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Food That Makes You Different: The Stigma Experienced by Adolescents With Celiac Disease

Cecilia Olsson

University of Umeå, Umeå, Sweden

Phil Lyon

University of Umeå, Umeå, Sweden

Agneta Hörnell

University of Umeå, Umeå, Sweden

Anneli Ivarsson

University of Umeå, Umeå, Sweden

Ylva Mattsson Sydner

University of Umeå, Umeå, Sweden

For adolescents with celiac disease (CD), a gluten-free diet (GFD) is crucial for health, but compliance is problematic and noncompliance is common even among those aware of the risks. To better understand their lives with the disease, Swedish CD adolescents were invited to take part in focus group discussions. Data were analyzed for recurrent stigma-related themes across the groups. Adolescents described an awareness of being different from others that was produced by meal appearance and the poor availability of gluten-free food. The GFD often required discussions and special requests, so eating in public had the effect of making an invisible condition visible, and thereby creating a context for felt or enacted stigma. Maintaining invisibility avoided negative consequences of stigma, and other strategies were used to reduce the costs of visibility. The results of the study show that the GFD can produce stigma experiences in adolescence, and that dietary compliance (or lack thereof) can be understood in terms of dealing with GFD concealment and disclosure.

Key Words: adolescents • chronic illness • dietetics • focus groups • lived experience • social constructionism • stigma

Qualitative Health Research, Vol. 19, No. 7, 976-984 (2009)
DOI: 10.1177/1049732309338722
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