Celiac disease, also known as gluten intolerance, is a permanent sensitivity to gluten which is found in wheat, rye and barley. The cause of celiac disease is still unclear but we know that both heredity and environment play a role. In Sweden, celiac disease more common than in many other countries. It is crucial to find out why this is so and if we can reduce the incidence of celiac disease by changing lifestyle in any way. We can increase the awareness of celiac disease by following the pattern of the disease across the country as well as through other research.

Since 1998 Sweden has had a unique incidence register for celiac disease in Sweden. The register was started through the initiative of the Swedish Pediatric Association (Barnläkarföreingen/BLF). In 1996 the Board offered new guidance on the introduction of gluten to the infant diet and the registry is an important part of quality assurance related to this.

The registry is administered, via the BLF's Gastroenterology and Nutrition section and, at the Department of Epidemiology and Gublic Health, Umeå University. This includes, among other things, planning and ongoing work with the registry to regularly send back reports to the participating units and to compile the incidence trends. The register’s steering group consists of three pediatricians; one representative of the Section’s Board, the celiac disease working group on celiac disease, and the registry management.

The registry has ethical approval and complies with the Personal Data Act and privacy regulations. Under this Act, children and parents have the right to obtain extracts from the register.

Purpose:

Through a nationwide registry for celiac disease in Swedish children the trend of the incidence of celiac disease can be followed and changes over time and geographical differences can be analyzed. The registry shall form the basis of other studies, for example disease etiology, opportunities for prevention, diagnosis, and long-term consequences with a goal to providing greater knowledge about celiac disease. Show less..

Data contains personal data

Method and outcome

Unit of analysis

Individual

Population

All the country's pediatric clinics and clinics, that perform intestinal biopsies, participate in reporting to the register. All clinics report all new cases of probable celiac disease *in children aged 0-17.99 years.

Time Method

Longitudinal

Sampling procedure

Non-probability

All of the country's pediatric clinics and clinics, that perform intestinal biopsies, participate in reporting to the register. Each participating unit appoints a contact person to get information and pass it on to those concerned. Employees at participating pediatric clinics and clinics inform children and parents about the registry orally and in writing, reporting within one month of each new probable celiac disease case in children aged 0-17.99 years old and with continued updates with results from further investigations.

Reporting of new cases is based on a standardized form including personal identity number, sex, place of residence and basis for diagnosis, i.e. symptoms, serological markers, HLA-DQ2/DQ8, and small intestinal biopsy mucosal evaluation.

Time period(s) investigated

1998 – Ongoing

Data format / data structure

Numeric

Data collection

Mode of collection: Physical measurements and tests
Time period(s) for data collection: 1998–ongoing
Source of the data: Registers/Records/Accounts: Medical/Clinical, Registers/Records/Accounts

Geographic coverage

Geographic spread

Geographic description: Sverige

Administrative information

Responsible department/unit

Department of Epidemiology and Global Health

Ethics Review

Umeå - Ref. 101-U2496-04

Topic and keywords

Research area

Medical and health sciences (Standard för svensk indelning av forskningsämnen 2011)

Basic medicine (Standard för svensk indelning av forskningsämnen 2011)

Gastroenterology and hepatology (Standard för svensk indelning av forskningsämnen 2011)

Public health, global health, social medicine and epidemiology (Standard för svensk indelning av forskningsämnen 2011)

Health (CESSDA Topic Classification)

Diet and nutrition (CESSDA Topic Classification)

Specific diseases, disorders and medical conditions (CESSDA Topic Classification)

Keywords

Primary prevention, Registries, Celiac disease, Glutens, Celiac, Wheat, Rye, Grain, National register, Infant feeding recommendations, Swedish pediatric association, Nutrition

Publications

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Grodzinsky E, Ivarsson A, Juto P, Olcén P, Fälth- Magnusson K, Persson LÅ, Hernell O. New automated immunoassay measuring Immunoglobulin A anti-gliadin antibodies for prediction of celiac disease in childhood. Clin Diag Lab Immunol 2001;8:564-570.
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Olsson C, Stenlund H, Hörnell A, Hernell O, Ivarsson A. Regional variation in celiac disease risk within Sweden revealed by the nationwide prospective incidence register. Acta Paediatr 2009;98:337-342.

Stenhammar L, Ascher H, Cavell B, Danielsson L, Dannaeus A, Ivarsson A, Lindquist B. Is the incidence of childhood coeliac disease in Sweden still rising? Acta Paediatr 1993;82:1056.

Ivarsson A, Persson LÅ, Stenhammar L, Hernell O. Is prevention of coeliac disease possible? Acta Paediatr 2000;89:749-750 [Letter].

Danielsson L, Stenhammar L, Ascher H, Cavell B, Danneus A, Hernell O, Ivarsson A, Lindberg T, Lindquist B. Glutenintolerans hos barn - diagnostiska rutiner i Sverige 1996 [Gluten intolerance in children - diagnostic routines in Sweden 1996]. Läkartidningen 1997;94:3165-3168.

Ivarsson A, Hernell O, Nyström L, Persson LÅ. Children born in the summer have an increased risk for coeliac disease. J Epidemiol Community Health 2003;57:36-39.
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Wärngård O, Stenhammar L, Ascher H, Cavell B, Danielsson L, Dannaeus A, Ivarsson A, Lindberg T, Lindquist B. Small bowel biopsy in Swedish paediatric clinics. Acta Paediatr 1996;85:240-241.

Danielsson L, Stenhammar L, Ascher H, Cavell B, Danneus A, Hernell O, Ivarsson A, Lindberg T, Lindquist B. Förslag till kriterier för celiakidiagnos hos barn. [Suggestion for diagnostic criteria for celiac disease in in children]. Läkartidningen 1998;95:2342-2343.

Ascher H, Hernell O, Ivarsson A, Kristiansson B, Lindberg T, Stenhammar L. Spädbarnsuppfödning och celiaki. Risk för ökning vid kostförändring [Infant feeding and celiac disease. Increased risk when changing diet]. Läkartidningen 1994;91:4641-4643.

Myléus A, Hernell O, Gothefors L, Hammarström M, Persson L, Stenlund H, Ivarsson A. Early infections are associated with increased risk for celiac disease: an incident case-referent study. BMC Pediatrics 2012;12:194-.
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Lagerqvist C, Dahlbom I, Hansson T, Juto P, Olcén O, Hernell O, Ivarsson A. Anti-gliadin Ig A best in finding the youngest celiacs. J Pediatr Gastroenterol Nutr 2008;47:428-435.

Ivarsson A, Persson LÅ, Nyström L, Hernell O. The Swedish coeliac disease epidemic with a prevailing two-fold higher risk in girls compared to boys may reflect gender specific risk factors. Eur J Epidemiol 2003;18:677-684.

Namatovu F, Sandström O, Olsson C, Lindkvist M, Ivarsson A. Celiac disease risk varies between birth cohorts, generating hypotheses about causality: evidence from 36 years of population-based follow-up. BMC Gastroenterology 2014 14:59 doi:10.1186/1471-230X-14-59.
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Stenhammar L, Ascher H, Danielsson L, Dannaeus A, Hernell O, Ivarsson A, Lindberg E, Lindquist B, Nivenius K. Small bowl biopsy in Swedish Paediatric clinics. Acta Paediatr 2002;91:1126-1129.

Olsson C, Hernell O, Hörnell A, Lönnberg G, Ivarsson A. Difference in celiac disease risk between Swedish birth cohorts suggests an opportunity for primary prevention. Pediatrics 2008;122:528-34. doi: 10.1542/peds.2007-2989.

Myleus A, Stenlund H, Hernell O, Gothefors L, Hammarström M, Persson L, Ivarsson A. Early vaccinations are not risk factors for Celiac Disease. Pediatrics 2012;130:E63-E70. doi: 10.1542/peds.2011-2806.
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Ivarsson A, Persson LÅ, Juto P, Peltonen M, Suhr O, Hernell O. High prevalence of undiagnosed coeliac disease in adults - a Swedish population-based study. J Intern Med 1999;245:63-68.
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Ivarsson A, Persson LÅ, Nyström L, Ascher H, Cavell B, Danielsson L, Dannaeus A, Lindberg T, Lindquist B, Stenhammar L, Hernell O. Epidemic of coeliac disease in Swedish children. Acta Paediatr 2000;89:165-171.

Stenhammar L, Högberg L, Danielsson L, Ascher H, Dannaeus A, Hernell O, Ivarsson A, Lindquist B, Nivenius K. How do Swedish paediatric clinics diagnose coeliac disease? Results of a nationwide questionnaire study. Acta Paediatr 2006;95:1495-1497.

Namatovu F, Strömgren M, Ivarsson A, Lindgren U, Olsson C, Lindkvist M, Sandström O. Neighborhood conditions and celiac disease risk among children in Sweden. Scand J Public Health . 2014 Nov;42:572-80. doi: 10.1177/1403494814550173.

Ivarsson A, Hernell O, Stenlund H, Persson LÅ. Breast-feeding protects against coeliac disease. Am J Clin Nutr 2002;75:914-921.
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Stenhammar L, Högberg L, Ivarsson A, Laurin P, Myléus A, Fälth-Magnusson K. Celiac disease and socio-economic status. Acta Paediatr 2014;103:e328 [Letter].

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