Article Text
Abstract
Background Coeliac disease (CD) is an immune-mediated systemic disorder induced in genetically susceptible individuals by gluten and related prolamines, resulting in various gastrointestinal (GI) and non-GI symptoms and signs (ESPGHAN, 2012). CD-specific antibodies (including anti-TTG and endomysial antiobodies (EMA)) are present. Enteropathy with villous atrophy, crypt hyperplasia and intraepithelial lymphocytes are found on duodenal biopsy (ESPGHAN 2012). Treatment is lifelong gluten-free diet (GFD). Global prevalence is around 1% (Hall, 2020), however 50–90% may be undiagnosed in the community (Goddard, 2006). ESPGHAN guidelines (ESPGHAN, 2020) allow CD to be diagnosed on bloods alone if TTG-IgA is greater than 10 times the upper limit of normal with positive EMA in a second sample.
Aim Children with CD in our tertiary centre were evaluated to compare perceived compliance with GFD and TTG values between groups diagnosed on bloods and on biopsy. We hypothesised that GFD compliance differs between those diagnosed on bloods versus biopsy.
Subjects and Methods 173 children were identified via the dietetic CD database diagnosed between 2006 – 2021 (64 male, 109 female). 69 were excluded (52 as incomplete compliance data or repeat TTG not available, 17 as diagnosis was too recent for repeat serology).
Results 21 patients were diagnosed on bloods. 18 met criteria for no-biopsy approach. Age at diagnosis ranged from 11 months to 14 years. 3 did not meet no-biopsy criteria.
19/21 were symptomatic (90%) - 13/21 (61%) GI symptoms, 4/21 iron deficiency anaemia. 10 had other co-morbidities which include cow’s milk and egg allergy and asthma.
15/21 (71%) reported good compliance, 6/15 (40%) had normal tTG, 9/15 (60%) children still had raised TTG. Of these 6 were within 2 years of diagnosis and 5/6 had declining TTGs (73% normal or declining TTG). 6/21 (28%) reported issues with compliance. Of these 5 had raised TTGs, 1 had normal TTG. 19 children were symptomatic at diagnosis; 14 reported good compliance and one asymptomatic at diagnosis had a normal repeat TTG.
83 patients were diagnosed on biopsy. Age at diagnosis ranged from 14 months – 16 years.
74/83 (89%) were symptomatic - 63/83 (75%) GI symptoms, iron deficiency anaemia and growth faltering. 11 had other comorbidities.
62/83 (74%) reported good compliance, 47/62 (75%) had TTG within normal range. 20/83 (24%) reported issues. 15/20 (75%) had raised TTG. 55/74 symptomatic children reported good compliance. 1/5 asymptomatic children had normal repeat TTG, 4/5 had raised TTGs.
Summary and Conclusion Reported compliance is similar between groups. 40% diagnosed on bloods reported good compliance with normal TTG (73% normal or declining within 2 years of diagnosis) compared to 75% diagnosed on biopsy. Reported issues with compliance were similar between groups (issues at nursery and school, not liking the taste of gluten free food, accidental exposure, taking ‘may contain’ products, and not avoiding all gluten sources). Understanding may be different between groups. Both groups had equal access to dietitians. The bloods group should be re-evaluated further from diagnosis and to capture more children diagnosed on bloods. Qualitative work exploring understanding and compliance may be useful.