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

Department of food and Nutrition, University of Umeå, Umeå, Sweden.
Qualitative Health Research (Impact Factor: 2.19). 08/2009; 19(7):976-84. DOI: 10.1177/1049732309338722
Source: PubMed


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.

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    • "Our-Celiac-Kids—National-Celiac-Disease-Support- Group rather than CD. Concerns about school are noted in other studies by parents raising youth with TID (Freeborn et al., 2013; Lange, Jackson, & Deeb, 2009; Marks, Wilson, & Crisp, 2013; Smaldone & Ritholz; Wennick & Hallstrom, 2006), as well as in research with youth with CD (Olsson et al., 2009; Sverker et al., 2007). Consequently, it is important for nurses to help parents and young people with TID and CD assist people outside the family and in schools understand each disease and its management requirements (Marks et al., 2013). "
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    ABSTRACT: Authors of this qualitative descriptive study interviewed 30 parents concerning their experiences raising a child or adolescent with type 1 diabetes (T1D) and celiac disease (CD). Analysis revealed six themes: (a) health complications of T1D, (b) challenges of daily disease management, (c) expenses, (d) the young person's emotional/mental health, (e) experiences with healthcare providers, and (f) experiences with people outside the family and at school. Results suggest nurses need to be sensitive to challenges young people living with T1D and CD and their parents face, conduct ongoing assessments, and provide time during interactions to adequately address concerns.
    Journal of Pediatric Nursing 10/2014; 30(2). DOI:10.1016/j.pedn.2014.09.011 · 1.01 Impact Factor
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    • "Dietary deviance may disqualify the affected individual from full social acceptance. A study of adolescents with coeliac disease described eating special food in public as a way of making an invisible condition visible (Olsson et al. 2009). A study of adults with coeliac disease revealed emotional dilemmas such as shame and fear of being a bother in food-related contexts (Sverker, Hensing, and Hallert 2005), and a study of young adults with type 1 diabetes described perceptions of having a stigmatizing condition which could easily undermine their identities as young and healthy individuals (Balfe et al. 2013). "
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    Scandinavian Journal of Disability Research 08/2014; DOI:10.1080/15017419.2014.941003
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    • "Not eating, trying to find an alternative, or bringing their own snack can be problematic and draw unwanted attention. Clinically-detected adolescents have also reported that questions about their diet and disease are experienced as demanding [51]. Treatment with a GFD can be considered costly, complex, and impacts all activities involving food [52]. "
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    ABSTRACT: BackgroundMass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved.MethodsAdolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis.ResultsThe overall theme – Internalizing the threat of risk – illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. continuing to fear it is “all in vain”.ConclusionsThere was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.
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