Persistent symptoms are diverse and associated with health concerns and impaired quality of life in patients with paediatric coeliac disease diagnosis after transition to adulthood

OBJECTIVE: To investigate the prevalence and associated factors of persistent symptoms despite a strict gluten-free diet in adult patients with coeliac disease diagnosed in childhood. DESIGN: Medical data on 239 currently adult patients with paediatric diagnosis were collected from patient records. Also, patients completed structured study questionnaire. All variables were compared between those with and without persistent symptoms. RESULTS: Altogether 180 patients reported adhering to a strict gluten-free diet. Of these, 18% experienced persistent symptoms, including various gastrointestinal symptoms (73%), arthralgia (39%), fatigue (39%), skin symptoms (12%) and depression (6%). Those reporting persistent symptoms had more often gastrointestinal comorbidities (19% vs 6%, p=0.023), health concerns (30% vs 12%, p=0.006) and experiences of restrictions on daily life (64% vs 43%, p=0.028) than the asymptomatic subjects. The patients with symptoms had poorer general health (median score 13 vs 14, p=0.040) and vitality (15 vs 18, p=0.015) based on a validated Psychological General Well-Being Questionnaire and more severe symptoms on a Gastrointestinal Symptom Rating Scale scale (total score 2.1 vs 1.7, p<0.001). Except for general health, these differences remained significant after adjusting for comorbidities. The groups were comparable in current sociodemographic characteristics. Furthermore, none of the childhood features, including clinical, serological and histological presentation at diagnosis, and adherence and response to the diet after 6–24 months predicted symptom persistence in adulthood. CONCLUSION: Almost one-fifth of adult patients diagnosed in childhood reported persistent symptoms despite a strict gluten-free diet. The ongoing symptoms were associated with health concerns and impaired quality of life.