Diagnostic delays and treatment challenges in children with coeliac disease: The New Zealand Coeliac Health Survey.

ABSTRACT

AIM: Coeliac disease (CD) is an increasingly common immune-mediated disorder. Treatment is a life-long gluten-free diet. The aim of this study was to describe the presenting symptoms, delays in diagnosis and difficulties associated with managing CD in children. METHOD: The New Zealand Coeliac Health Survey was undertaken in collaboration with Coeliac New Zealand Incorporated, whose membership was the study population. The questionnaire enquired about presenting and ongoing symptoms, and challenges associated with treatment. Children aged <16 years were included in this analysis. Proportions and the mean or median were calculated, as appropriate. RESULTS: There were 123 children with doctor-diagnosed CD. The median age at diagnosis was 4 years (range 0-13 years). The median time between symptom onset and diagnosis was 1.5 years (range 0-11 years). Despite a gluten-free diet, many children continued to experience symptoms, which were most commonly attributed to an unknown cause (61.8%), hidden sources of gluten (44.1%) or food allergy (29.4%). Families found that following a gluten-free diet was very (12%) or moderately (31%) difficult, particularly when eating out. CONCLUSION: Recognition of the challenges associated with the diagnosis and treatment of CD in childhood is an important issue in addressing the needs of children with CD, and their families.