Adherence to gluten-free diet and follow-up of pediatric celiac disease patients, during childhood and after transition to adult care

Long-term data on pediatric celiac disease (CD) patients after transition to adult care is scarce. We aimed to evaluate patients' adherence to a gluten-free diet (GFD), the normalization of celiac serology and the frequency of follow-up before age 18, and to study changes in adherence and follow-up frequency after transition to adult care. Presenting symptoms, serology and biopsy results, patients' reported GFD adherence, frequency of follow-up visits, and complications before and after 18 years were collected for CD patients diagnosed between 1998 and 2017. Of 441 CD patients diagnosed and followed in childhood, a quarter (108/441) were over 18 y (years) at data collection. Median age at diagnosis 7.1 y (9 months-18 y), at data collection 23 y (18-38 y), disease duration 11.3 y (2-36 y). Below the age of 18 y, most patients 386/436 (88.5%) reported adherence to GFD, and most 372/425 (85.7%) normalized serology. Of the 441 patients, only 3 failed to attend any follow-up visit, and 338/441 (76.6%) attended yearly visits. Over the age 18 y, serology testing was done in 78/108 (72.2%), every 1-3 y in 46/78 (59%). Serology normalized in 61/78 (78.2%). Most adult patients 77/108 (71.5%) never attended a gastroenterology clinic. CD-related complications were rare. Younger age at diagnosis, regular follow-up visits in childhood, resolution of symptoms, and normalization of serology before age 18 were identified as predictors of negative serology after the age of 18 y. Conclusions: Children who have regular follow-up and normalize serology before age 18 years are likely to maintain a GFD and have negative serology as adults. What is Known: The rate of adherence to gluten-free diet (GFD) is higher among children compared to adults. Data on long-term follow-up after transition to adult care is scarce. What is New: Patients diagnosed with CD at a younger age (<12 y), who have yearly follow-up visits, resolution of symptoms, and negative serology in childhood are very likely to maintain GFD and have negative serology as adults. Even though most patients do not attend GI clinics after transition to adulthood, most adhere to GFD, and complications are rare.

Automated summary

Regular follow-up and normalization of serology before the age of 18 in pediatric CD patients increase the likelihood of maintaining a gluten-free diet and having negative serology as adults. Most patients continue to adhere to a gluten-free diet and experience rare complications even after transitioning to adult care.