Long-Term Mortality in People With Celiac Disease Diagnosed in Childhood Compared With Adulthood: A Population-Based Cohort Study

Masoud Solaymani-Dodaran, M.D., Ph.D., M.P.H.; Joe West, M.B., Ph.D., M.R.C.P.; Richard F.A. Logan, M.B., M.Sc., F.R.C.P.


Am J Gastroenterol. 2007;102(4):864-870. 

In This Article

Abstract and Introduction


Introduction: To explore whether the excess mortality in celiac disease is related directly to the disease and duration of gluten exposure before diagnosis we have examined the long-term mortality experience of people with celiac disease diagnosed as children and as adults.
Methods: Two hundred eighty-five children and 340 adults diagnosed with celiac disease were followed until death, loss to follow-up, or December 31, 2004. We calculated standardized mortality ratios (SMRs).
Results: All-cause mortality more than 5 yr after diagnosis was increased threefold in children (SMR 3.32, 95% CI 2.05-5.07) compared with only a 38% increase in adults (SMR 1.38, 95% CI 1.16-1.63). This excess mortality in children was primarily because of an increased risk of death from accidents, suicide, and violence (seven deaths, SMR 3.22, 95% CI 1.29-6.63), cancer (five deaths, SMR 3.72, 95% CI 1.21-8.67), and cerebrovascular disease (two deaths, SMR 10.03, 95% CI 1.21-36.00).
Conclusions: Children diagnosed with celiac disease had a threefold increased risk of long-term mortality. This is in marked contrast to the experience of adult celiac disease where the long-term increase of mortality was modest. The increased mortality in children from external causes may reflect behavioral change associated with coping with a chronic disease and its treatment.


Various studies have found that celiac disease still confers about a 1.3- to 2-fold increase in all-cause mortality compared with the general population.[1,2,3,4,5,6] It is unclear how much this increase is related to celiac disease itself and how much the increase might be only indirectly related via various associated conditions. In addition, there has been speculation that the duration of gluten exposure prior to diagnosis has long-term adverse effects and therefore contributes to mortality.[6] If the mortality increase is directly the result of celiac disease and/or the duration of preceding gluten exposure, then celiac disease diagnosed in childhood might be expected to be associated with a lesser increase of mortality than adult diagnosed disease.[3,4]

Previous studies have been unable to precisely estimate the mortality in children with celiac disease mainly because of lack of long-term follow-up.[5,6,7,8] In adults most of the excess mortality in celiac disease has previously been reported as resulting from malignant disease.[6] As children with celiac disease are mostly diagnosed around the age of 1-3 yr they have little long-term gluten exposure, assuming they are compliant with a gluten-free diet. It is plausible then that children may be protected in some way from the excess malignant risk that is apparent in adults.

To examine whether there are differences in the long-term mortality experience of people diagnosed with celiac disease as children and as adults we have analyzed further data from the Lothian celiac disease cohort. As this study has good quality follow-up we have been able to examine cause-specific mortality over many years following diagnosis compared with the general population.


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