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: Abstract The present study investigated the perceptions of individuals with celiac disease about gluten-free (GF) products, their consumer behavior and which product is the most desired. A survey was used to collect information. Descriptive analysis, χ(2) tests and Multiple Logistic Regressions were conducted. Ninety-one questionnaires were analyzed. Limited variety and availability, the high price of products and the social restrictions imposed by the diet were the factors that caused the most dissatisfaction and difficulty. A total of 71% of the participants confirmed having moderate to high difficulty finding GF products. The logistic regression identified a significant relationship between dissatisfaction, texture and variety (p < 0.05) and between variety and difficulty of finding GF products (p < 0.05). The sensory characteristics were the most important variables considered for actual purchases. Bread was the most desired product. The participants were dissatisfaction with GF products. The desire for bread with better sensory characteristics reinforces the challenge to develop higher quality baking products.International Journal of Food Sciences and Nutrition 06/2014; 65(4):394-8. DOI:10.3109/09637486.2013.879286 · 1.20 Impact Factor
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ABSTRACT: To translate, cross-culturally adapt, and validate a specific questionnaire for the evaluation of celiac children and adolescents, the celiac disease DUX (CDDUX). The steps suggested by Reichenheim and Moraes (2007) were followed to obtain conceptual, item, semantic, operational, and measurement equivalences. Four pediatric gastroenterologists; a researcher with tool validation background; three English teachers; and 33 celiac patients, aged 8-18 years, and their caregivers participated in the study. The scores of celiac patients and those obtained from their caregivers were compared. Among the patients, the scores were compared in relation to gender and age. All items were considered relevant to the construct and good semantic equivalence of the version was acquired. During measurement equivalence, the exploratory factor analysis showed appropriate weight of all items and good internal consistency, with Cronbach's α of 0.81. Significant difference was found among the final scores of children and their caregivers. There was no difference among the final scores in relation to gender or age. The questionnaire was translated and adapted according to all the proposed steps, with all equivalences adequately met. It is a valid tool to access the QoL of celiac children and adolescents in the translated language. Copyright © 2015 Sociedade Brasileira de Pediatria. Published by Elsevier Editora Ltda. All rights reserved.Jornal de pediatria 06/2015; 120. DOI:10.1016/j.jped.2014.11.005 · 0.94 Impact Factor
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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