Food That Makes You Different: The Stigma Experienced by Adolescents With Celiac Disease

Abstract

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.

Screening for celiac disease in the general population and in high‐risk groups

“…In symptomatic CD, the GFD results in rapid recovery from symptoms, paralleled with improvement in QOL 46,53,[125][126][127] (Table 2); however, screening-detected CD patients may have considered themselves healthy before the diagnosis, and now the stigma of a chronic disorder 128 and need of major dietary restrictions may potentially even increase their self-perceived burden of illness and impair their QOL. [129][130][131] Prospective studies on QOL in CD patients detected by screening of at-risk groups or in populations in general are limited (Table 2).…”

Implementación de un cuestionario de calidad de vida relacionada con la salud para niños y adolescentes con enfermedad celíaca

“…La dieta, que debe implementarse de por vida, implica restricciones y alteraciones en la vida social del niño que pueden afectar su calidad de vida y repercutir en el cumplimiento del tratamiento. [11][12][13][14][15] Con el objetivo de contar con una herramienta que permita abordar la problemática de la CVRS de niños y adolescentes con EC hemos adaptado y validado, de acuerdo con los lineamientos internacionales, el cuestionario especifico CDDUX, que mostró adecuada validez y confiabilidad, y que demanda poco tiempo de realización: en promedio, 4 minutos. [16][17][18][19] El objetivo de esta investigación fue evaluar la implementación y la sensibilidad al cambio de la versión argentina del cuestionario específico CDDUX.…”

Perspectives on living with coeliac disease in remission : Daily life experiences, symptoms and well-being

“…Furthermore, CD is a relatively rare disease that is not well understood by the public. The disease can be hidden in some social situations, but becomes obvious in others [80], making people with CD aware that they are different from others [154]. There is a need for an attitude change in society through increased knowledge concerning CD per se, but also with regard to these peoples' living conditions.…”