Ninety Percent of Coeliac Disease May be Being Missed

Based on screening data, 140 children from Avon would be expected to have coeliac disease. However, only 12 of these children have been diagnosed with coeliac disease. This suggests that 90% of children with possible coeliac disease may be being missed.

V.K.T. Nootigattu and B.K. Sandhu ([email protected])
Paediatric Gastroenterology Unit, Bristol Royal Hospital for Children,
Upper Maudlin Street, Bristol BS2 8BJ, UK

Background:
Data from the Avon Longitudinal Study of Parents and Children (ALSPAC) suggest that the prevalence of coeliac disease (CD) is 1%. Using tissue transglutaminase (TTG) and IgA endomysial antibodies (EMA), 54 of 5,470 children screened proved positive for coeliac dieseae. Within Avon, all small bowel biopsies for formal diagnosis of coeliac disease in children are carried out at Bristol Children’s Hospital.

Objective:
The aim of the study was to identify children from ALSPAC (date of birth: 01.04.1991-31.12.1992 and Avon postcodes) who had been formally diagnosed to have coeliac disease.

Methodology:
Since 1990, data have been prospectively collected on all children having endoscopic small-bowel biopsy. These data and centralized computer and dietetic records within Avon have been analyzed.

Results:
Twelve children from Avon diagnosed with coeliac disease since 1.4.1991 have birthdays concordant with ALSPAC. This gives a prevalence rate of 1/1,100. All had symptoms. Four had a family history. At time of diagnosis, all were aged over 2 years, 3 were aged 2-5years, 6 were aged 5-10 years, and 3 were aged 10-14 years. Based on screening data, 140 children from Avon would be expected to have coeliac disease. However, only 12 of these children have been diagnosed with coeliac disease. This suggests that 90% of children with possible coeliac disease may be being missed. The screening data also recorded that children with positive screening tests were lagging behind in growth by 9 months. There are other well-documented long-term health hazards of untreated coeliac disease.

Conclusion: The data suggest that all children should be screened for coeliac disease.