Objectives: To establish the incidence of childhood coeliac disease (CD) in Scotland between 1 September 2009 and 31 August 2010, to determine clinical features at presentation and reasons for diagnosis, and to identify any differences in incidence and practice between regions.
Design: Prospective data collection through the Scottish Paediatric Surveillance Unit (SPSU). Strategic contacts in each tertiary gastrointestinal region (East, West and North) were emailed monthly to report new cases of CD (<16 years). A clinical questionnaire was completed for each case. Additionally, regional laboratories were asked to report the number of diagnostic antibody tests for CD performed over the year.
Setting: This national study looked at the total cases within Scotland. Scotland has a population of 5.2 million, with the mid-year estimate in 2009 of 912 144 children under the age of 16.
Results: 91 new cases were reported, giving an overall adjusted incidence of 10.0/100 000/year. Incidence in the East was 16.3/100 000/year, West 8.1/100 000/year and North 7.7/100 000/year. Cases diagnosed due to active screening in the East (4.6/100 000/year) were more than twice the number observed in the West (2.0/100 000/year) and North (1.3/100 000/year), as was the incidence of classic cases. The most frequent symptoms reported were abdominal pain (50/91; 54.9%), failure to thrive (29/91; 31.9%), fatigue (29/91; 31.9%), diarrhoea (27/91; 29.7%) and bloating (19/91; 20.9%). Twenty-two children (24.2%) were diagnosed due to active screening, of which 14 had associated type 1 diabetes mellitus, one Down syndrome and seven had family history. Fifty-five per cent (12/22) of the patients diagnosed through active screening were asymptomatic. Significantly more CD diagnostic antibody tests were performed per head of population in the East compared with the West (OR 1.65, 95% CI 1.57 to 1.73) and North (OR 1.81, 95% CI 1.70 to 1.92).
Conclusions: Approximately double the incidence of paediatric CD was observed in the East of Scotland. Evidence of more actively screened cases diagnosed and more antibody tests performed in the region suggests a lower threshold to test. An environmental influence cannot be dismissed since more classic cases were also captured. Further research is needed to highlight the role of any exogenous factors.