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Difference in celiac disease risk between Swedish birth cohorts suggests an opportunity for primary prevention
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.ORCID iD: 0000-0002-3731-6565
Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.ORCID iD: 0000-0002-5464-5686
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.
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2008 (English)In: Pediatrics, ISSN 0031-4005, E-ISSN 1098-4275, Vol. 122, no 3, 528-34 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: Sweden experienced a unique epidemic of celiac disease in children <2 years of age. The epidemic was partly explained by changes in infant feeding over time and indicated a multifactorial pathogenesis. The main aim of this study was to analyze celiac disease risk in epidemic and postepidemic birth cohorts up to preschool age, to explore further the opportunity for primary prevention. METHODS: A population-based incidence register of celiac disease in children covering the entire nation from 1998 to 2003 and part of the country back to 1973 was analyzed. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition diagnostic criteria for celiac disease were used. The annual incidence rate for each age group and the cumulative incidence according to age for each birth cohort were calculated. RESULTS: A considerable difference in cumulative incidences of celiac disease at comparable ages was demonstrated between birth cohorts from the epidemic and postepidemic periods. The difference persisted during the preschool years, although it decreased somewhat with age. During the last years of the follow-up period, there was again a successive increase in incidence rate among children <2 years of age. CONCLUSIONS: The difference in celiac disease risk between birth cohorts at comparable ages suggests an opportunity for primary prevention. This highlights the importance of further exploring the role of infant feeding and exogenous factors besides dietary gluten that might initiate or prevent disease development. Moreover, on the basis of postepidemic incidence trends, we speculate that the Swedish epidemic might not have been as unique as thought previously, although its magnitude was striking.

Place, publisher, year, edition, pages
2008. Vol. 122, no 3, 528-34 p.
Keyword [en]
celiac disease, children, incidence, infant
National Category
Pediatrics Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:umu:diva-18942DOI: 10.1542/peds.2007-2989ISI: 000258822600008PubMedID: 18762522OAI: oai:DiVA.org:umu-18942DiVA: diva2:200880
Projects
ETICS
Available from: 2009-03-01 Created: 2009-03-01 Last updated: 2017-06-07Bibliographically approved
In thesis
1. Celiac disease in Swedish children and adolescents: variations in incidence and essentials of gluten-free eating with a youth perspective
Open this publication in new window or tab >>Celiac disease in Swedish children and adolescents: variations in incidence and essentials of gluten-free eating with a youth perspective
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Sweden has experienced a unique epidemic of celiac disease (CD) in children younger than 2 years of age. The epidemic was partly explained by changes over time in infant feeding and indicated a multifactorial aetiology.

In CD, a strict lifelong gluten-free diet (GFD) is crucial for health but noncompliance is often reported among adolescents. Knowledge is limited regarding their own perspectives and experiences of managing the disease and adhering to GFD.

Objectives To analyse the incidence of CD in epidemic and post epidemic birth cohorts, and explore and understand how adolescents with CD perceive and manage their everyday lives in relation to the GFD.

Methods A population-based incidence register of CD in children covering the entire nation from 1998 to 2003, and part of the country back to 1973. ESPGHAN diagnostic criteria for CD and NUTS classification of regions were used. Incidence rates for each year of diagnosis, age group, gender and region, and cumulative incidence by age for each birth cohort were calculated.

Ten focus groups were conducted with 47 CD adolescents aged 15-18 years. Transcribed interviews were analysed to illustrate and explain adolescents’ own perspectives concerning life with a GFD, and to search for recurrent stigma-related themes across the groups.

Results A considerable gap in the cumulative incidence of CD at comparable ages was demonstrated between birth cohorts of the epidemic and post-epidemic periods. The gap persisted during pre-school years, although it decreased somewhat with age. During the final years of follow-up there was again a gradual increase in incidence rate among children younger than 2 years of age. The childhood populations in ‘West Sweden’ and ‘Småland and the islands’ had a significantly higher incidence rate compared to ‘North Middle Sweden’ and ‘Stockholm’.

CD adolescents described an awareness of being different from others produced by meal appearance and the poor availability of gluten-free (GF) food. 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 the negative consequences of stigma. The probability of compliance with the GFD was compromised by insufficient knowledge of significant others, problems with the availability and sensory acceptance of GF food, insufficient social support and their perceived dietary deviance. Three different approaches to the GFD emerged: compliers, occasional non-compliers, and non-compliers.

Conclusions The difference in CD risk between birth cohorts at comparable ages may suggest an opportunity for primary prevention. Based on post-epidemic incidence trends, the Swedish epidemic might not have been as unique as previously thought, even though its magnitude was striking. The regional variation in CD risk supports multifactorial aetiology. Continued efforts are warranted to define factors besides gluten exposure that modulate CD risk.

CD adolescents experience various dilemmas related to the GFD. It can produce stigma experiences in adolescence, and dietary compliance (or lack of) can be understood in terms of dealing with GFD concealment and disclosure. The increase in CD prevalence over time and unmet needs in young celiacs require resources to attain adequate levels of dietetic provision, regulated subsidies for covering additional costs for GF food, evidence-based practice, and increased general CD awareness for optimum clinical outcomes.

Place, publisher, year, edition, pages
Umeå: Kostvetenskap, 2008. 59 p.
Keyword
Adolescent, Celiac disease, Focus groups, Gluten-free diet, Incidence, Infant feeding, Patient compliance, Primary prevention, Social Constructionism, Stigma
National Category
Food Science
Research subject
Food and Nutrition
Identifiers
urn:nbn:se:umu:diva-1919 (URN)978-91-7264-650-6 (ISBN)
Public defence
2008-12-05, Hörsal D, Samhällsvetarhuset, Umeå Universitet, 901 87, Umeå, 09:00 (English)
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Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2015-11-04Bibliographically approved

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Olsson, CeciliaHernell, OlleHörnell, AgnetaLönnberg, GöranIvarsson, Anneli

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