• Ellen J van Koppen, Joachim J Schweizer, Cassandra G D S Csizmadia, Yvonne Krom, Herbertien B Hylkema, Annemarie M van Geel, Hendrik M Koopman, S Pauline Verloove-Vanhorick, and Maria Luisa Mearin.
• Department of Paediatrics, Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, Netherlands.
• Pediatrics. 2009 Apr 1; 123 (4): e582-8.

ObjectiveMass screening for celiac disease is controversial. The objective of this study was to determine whether detection of childhood celiac disease by mass screening improves long-term health status and health-related quality of life.MethodsWe conducted a prospective 10-year follow-up study of 32 children who were aged 2 to 4 years, had celiac disease identified by mass screening, and had a gluten-free diet (19) or a normal gluten-containing diet (13). The follow-up included assessments of general health status, celiac disease-associated symptoms, celiac disease-associated serum antibodies, and health-related quality of life.ResultsTen years after mass screening, 81% of the children were adhering to a gluten-free diet. The health status improved in 66% of the treated children: in 41% by early treatment and in 25% by prevention of the gluten-dependent symptoms that they developed after diagnosis. For 19% of the children, treatment after screening would not have improved their health status, because they had no symptoms at screening and have remained symptom-free while consuming gluten. The health-related quality of life of the children with symptoms improved significantly after 1 year of gluten-free diet. Ten years after screening, the health-related quality of life of the children with celiac disease was similar to that of the reference population.ConclusionIdentification by mass screening led 10 years later to health improvement in 66% of children without deterioration of generic health-related quality of life. There is a good compliance after mass screening. In a research setting, delaying treatment for children without symptoms seems to be an option after a positive screening test. Long-term follow-up studies are needed to assess possible long-term complications in untreated, nonsymptomatic celiac disease.

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