umu.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Celiac disease in Swedish children and adolescents: variations in incidence and essentials of gluten-free eating with a youth perspective
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.ORCID iD: 0000-0002-3731-6565
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 [en]
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: urn:nbn:se:umu:diva-1919ISBN: 978-91-7264-650-6 (print)OAI: oai:DiVA.org:umu-1919DiVA: diva2:142424
Public defence
2008-12-05, Hörsal D, Samhällsvetarhuset, Umeå Universitet, 901 87, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2015-11-04Bibliographically approved
List of papers
1. Difference in celiac disease risk between Swedish birth cohorts suggests an opportunity for primary prevention
Open this publication in new window or tab >>Difference in celiac disease risk between Swedish birth cohorts suggests an opportunity for primary prevention
Show others...
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.

Keyword
celiac disease, children, incidence, infant
National Category
Pediatrics Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-18942 (URN)10.1542/peds.2007-2989 (DOI)000258822600008 ()18762522 (PubMedID)
Projects
ETICS
Available from: 2009-03-01 Created: 2009-03-01 Last updated: 2017-06-07Bibliographically approved
2. Regional variation in celiac disease risk within Sweden revealed by the nationwide prospective incidence register.
Open this publication in new window or tab >>Regional variation in celiac disease risk within Sweden revealed by the nationwide prospective incidence register.
Show others...
2009 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 98, no 2, 337-342 p.Article in journal (Refereed) Published
Abstract [en]

AIM: To determine if there is any regional celiac disease (CD) risk variation in the Swedish childhood population. METHODS: Prospective nationwide Swedish incidence register of CD in children 0-15 years of age, with the present analysis covering the period from 1998 to 2003. ESPGHAN diagnostic criteria for CD were used. Regions were classified according to the Nomenclature of Territorial Units for Statistics. The incidence rate for each region, gender, age group and year of diagnosis was calculated. RESULTS: A regional variation in CD risk was demonstrated. The childhood populations in 'West Sweden' and 'Småland and the islands', situated in the southern part of the country, had a significantly higher incidence rate compared to in 'North Middle Sweden' and 'Stockholm', situated in the central part. This regional variation was not explained by variations in risk by gender, age at diagnosis or year of diagnosis. CONCLUSION: The Swedish regional variation in CD risk supports multifactorial disease aetiology. Continued efforts are warranted to define factors, besides gluten exposure, that modulate CD risk.

Keyword
breastfeeding, celiac disease, gluten, incidence
Identifiers
urn:nbn:se:umu:diva-18945 (URN)10.1111/j.1651-2227.2008.01086.x (DOI)18976369 (PubMedID)
Projects
ETICS
Available from: 2009-03-01 Created: 2009-03-01 Last updated: 2017-12-13Bibliographically approved
3. The everyday life of adolescent coeliacs: issues of importance for compliance with the gluten-free diet
Open this publication in new window or tab >>The everyday life of adolescent coeliacs: issues of importance for compliance with the gluten-free diet
2008 (English)In: Journal of human nutrition and dietetics (Print), ISSN 0952-3871, E-ISSN 1365-277X, Vol. 21, no 4, 359-367 p.Article in journal (Refereed) Published
Abstract [en]

Background Noncompliance with the gluten-free diet is often reported among adolescents with coeliac disease. However, knowledge is limited regarding their own perspectives and experiences of managing the disease and the prescription of a gluten-free diet. The aim of this study was to explore how adolescents with coeliac disease perceive and manage their everyday lives in relation to a gluten-free diet. Methods in total, 47 adolescents with coeliac disease, divided into 10 focus groups, were interviewed. In the qualitative analysis, themes emerged to illustrate and explain the adolescents' own perspectives on life with a gluten-free diet. Results The probability of compliance with the gluten-free diet was comprised by insufficient knowledge of significant others, problems with the availability and sensory acceptance of gluten-free food, insufficient social support and their perceived dietary deviance. Three different approaches to the gluten-free diet emerged: compliers, occasional noncompliers, and noncompliers. Each approach, as a coping strategy, was rational in the sense that it represented the adolescents' differing views of everyday life with coeliac disease and a prescription of a gluten-free diet. Conclusions Adolescents with coeliac disease experience various dilemmas related to the gluten-free diet. The study demonstrated unmet needs and implies empowerment strategies for optimum clinical outcomes.

Place, publisher, year, edition, pages
Wiley Blackwell, 2008
Keyword
adolescent, celiac disease, focus groups, gluten-free diet, patient compliance
National Category
Social Sciences Interdisciplinary Nutrition and Dietetics Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Food and Nutrition
Identifiers
urn:nbn:se:umu:diva-19998 (URN)10.1111/j.1365-277X.2008.00867.x (DOI)000258032000007 ()18754144 (PubMedID)
Available from: 2009-03-13 Created: 2009-03-13 Last updated: 2017-06-08Bibliographically approved
4. Food that makes you different: the stigma experienced by adolescents with celiac disease
Open this publication in new window or tab >>Food that makes you different: the stigma experienced by adolescents with celiac disease
Show others...
2009 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 19, no 7, 976-984 p.Article in journal (Refereed) Published
Abstract [en]

For adolescents with celiac disease (CD), a gluten-free diet(GFD) is crucial for health, but compliance is problematic andnoncompliance is common even among those aware of the risks.To better understand their lives with the disease, Swedish CDadolescents were invited to take part in focus group discussions.Data were analyzed for recurrent stigma-related themes acrossthe groups. Adolescents described an awareness of being differentfrom others that was produced by meal appearance and the pooravailability of gluten-free food. The GFD often required discussionsand special requests, so eating in public had the effect ofmaking an invisible condition visible, and thereby creatinga context for felt or enacted stigma. Maintaining invisibilityavoided negative consequences of stigma, and other strategieswere used to reduce the costs of visibility. The results ofthe study show that the GFD can produce stigma experiences inadolescence, and that dietary compliance (or lack thereof) canbe understood in terms of dealing with GFD concealment and disclosure.

Place, publisher, year, edition, pages
Sage Publications, 2009
Keyword
adolescents, chronic illness, dietetics, focus groups, lived experience, social constructionism, stigma
National Category
Food Science
Research subject
Food and Nutrition
Identifiers
urn:nbn:se:umu:diva-26934 (URN)10.1177/1049732309338722 (DOI)
Available from: 2009-11-03 Created: 2009-11-03 Last updated: 2017-12-12Bibliographically approved

Open Access in DiVA

fulltext(340 kB)1827 downloads
File information
File name FULLTEXT01.pdfFile size 340 kBChecksum SHA-1
be9417ccd57b57e396a0d70fd66b7fa4f4679b7272ca440cb10b6b2476d956a9d88283b1
Type fulltextMimetype application/pdf

Search in DiVA

By author/editor
Olsson, Cecilia
By organisation
Department of Food and Nutrition
Food Science

Search outside of DiVA

GoogleGoogle Scholar
Total: 1827 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 2250 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf