The rising incidence of celiac disease in Scotland.

BACKGROUND AND OBJECTIVES: Although the incidence of pediatric celiac disease (CD) is increasing globally, it is uncertain whether this is attributed to improved case ascertainment or signifies a true rise. We aimed to identify all incident cases of childhood CD in southeast Scotland over the period 1990 to 2009 to assess trends in total incidence and cases diagnosed as a result of (1) a classic presentation, (2) a nonclassic presentation, or (3) targeted screening. METHODS: Twenty-year retrospective cohort study of case notes, pathology databases, endoscopy, and patient records for all children (<16 years of age) diagnosed with CD on biopsy in southeast Scotland (at-risk population of 225000-233000). Data were age-gender standardized and Poisson regression models used to calculate changes in incidence over time. RESULTS: A total of 266 children were diagnosed from 1990 to 2009 with an increase in incidence from 1.8/100000 (95% confidence interval [CI] 1.1-2.7) to 11.7/100000 (95% CI 9.8-13.9) between the epochs 1990 to 1994 and 2005 to 2009, respectively (P < .0001). The incidence of nonclassic presentation (children with a monosymptomatic presentation and those with extraintestinal symptoms) and actively screened cases increased by 1566% (P < .05) and 1170% (P < .001) from 1990 to 1999 to 2000 to 2009, respectively. However, a rise in the incidence of Oslo classic cases from 1.51/100000 (95% CI 0.91-2.38) in 1990 to 1994 to 5.22/100000 (95% CI 3.98-6.75) in 2005 to 2009 (P < .01) remained evident. CONCLUSIONS: The incidence of pediatric CD increased 6.4-fold over the 20 years. This study demonstrates that this rise is significant for classic CD, indicating a true rise in the incidence of pediatric CD.

Childhood coeliac disease diagnoses in Scotland 2009-2010: the SPSU project.

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.