Mortality in people with coeliac disease: Long-term follow-up from a Scottish cohort

Background Few studies have determined the very long-term mortality risks in adult and childhood-diagnosed coeliac disease. Objective We quantified mortality risks in coeliac disease and determined whether age at diagnosis, or time following diagnosis, modified these risks. Methods Standardised mortality ratios were determined using data from a cohort of 602 coeliac patients assembled between 1979-1983 from Lothian, Scotland, and followed up from 1970-2016. Results All-cause mortality was 43% higher than in the general population. Excess deaths were primarily from haematological malignancies (standardised mortality ratio, 4.77) and external causes (standardised mortality ratio, 2.62) in adult and childhood-diagnosed cases respectively. Mortality risks declined steadily with time in adult-diagnosed cases (standardised mortality ratio, 4.85 in first year compared to 0.97, 25 years post-diagnosis). Beyond 15 years, this group had a significantly reduced risk of any malignancy (standardised mortality ratio, 0.57 (95% confidence interval: 0.33-0.92)). In contrast, for childhood-diagnosed cases an increased risk existed beyond 25 years (standardised mortality ratio, 2.24). Conclusions Adult-diagnosed coeliac patients have a temporarily increased mortality risk mainly from malignant lymphomas and a decreased risk of any malignancy beyond 15 years post-diagnosis. In contrast, childhood-diagnosed cases are at an increased risk of mortality mainly from external causes, and have long-term mortality risks that requires further investigation.