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.
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ABSTRACT: Celiac disease (CD) occurs in approximately 1% of the Western population. It is a lifelong disorder that is associated with impaired quality of life (QOL) and an excessive risk of comorbidity and death. To review the literature on screening for CD in relation to the current World Health Organization (WHO) criteria for mass screening. We performed a PubMed search to identify indexed papers on CD screening with a publication date from 1900 until 1 June 2014. When we deemed an abstract relevant, we read the corresponding paper in detail. CD fulfills several WHO criteria for mass screening (high prevalence, available treatment and difficult clinical detection), but it has not yet been established that treatment of asymptomatic CD may reduce the excessive risk of severe complications, leading to higher QOL nor that it is cost-effective. Current evidence is not sufficient to support mass screening for CD, but active case-finding may be appropriate, as we recognize that most patients with CD will still be missed by this strategy. Although proof of benefit is still lacking, screening for CD may be appropriate in high-risk groups.04/2015; 3(2):106-20. DOI:10.1177/2050640614561668
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ABSTRACT: To evaluate the gluten-free diet (GFD) adherenceafter one year of follow-up in children with screening-detected celiac disease (CD) in a general population.Journal of Pediatric Gastroenterology and Nutrition 09/2014; 60(1). DOI:10.1097/MPG.0000000000000571 · 2.87 Impact Factor
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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 · 0.92 Impact Factor