Lack of long‐term follow‐up after paediatric‐adult transition in coeliac disease is not associated with complications, ongoing symptoms or dietary adherence

Background Follow‐up of coeliac disease is recommended to prevent complications associated with unsuccessful treatment. Objective The objective of this article is to evaluate the implementation and significance of long‐term follow‐up. Methods Medical data were collected from 585 and follow‐up questionnaires sent to 559 current adult coeliac disease patients diagnosed in childhood. Diagnostic features and adulthood health outcomes were compared between those with and without adulthood follow‐up. Results Of paediatric patients, 92% were followed up 6–24 months after diagnosis. A total of 235 adults responded to the questionnaires a median of 18 years after diagnosis, and 25% of them reported regular follow‐up. They were diagnosed more recently than those without follow‐up (median year 2001 vs 1995, p  = 0.001), being otherwise comparable at diagnosis. Those with follow‐up were less often smokers (5% vs 16%, p  = 0.042) and relatives of coeliac patients (48% vs 66%, p  = 0.018), and more often students (48% vs 28%, p  = 0.005) and type 1 diabetics (19% vs 4%, p  = 0.001). Lack of follow‐up was not associated with complications, ongoing symptoms, poorer general health or dietary adherence. All completely non‐adherent patients were without follow‐up. Conclusions Most coeliac disease patients diagnosed in childhood were not followed up according to recommendations in adulthood. The individual effect of this on long‐term treatment outcomes varied markedly.