Symptom Outcomes of Celiac Disease in Those on a Gluten-free Diet

Isabel A Hujoel; Margaux L A Hujoel; Rok Seon Choung; Joseph A Murray

doi:10.1097/MCG.0000000000001946

Symptom Outcomes of Celiac Disease in Those on a Gluten-free Diet

J Clin Gastroenterol. 2023 Nov 27. doi: 10.1097/MCG.0000000000001946. Online ahead of print.

Authors

Isabel A Hujoel¹, Margaux L A Hujoel^{2

3}, Rok Seon Choung⁴, Joseph A Murray⁴

Affiliations

¹ Division of Gastroenterology, Department of Internal Medicine University of Washington, Seattle, WA.
² Division of Genetics, Department of Medicine Brigham and Women's Hospital and Harvard Medical School, Boston.
³ Program in Medical and Population Genetics Broad Institute of MIT and Harvard, Cambridge, MA.
⁴ Department of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN.

PMID: 38019078
DOI: 10.1097/MCG.0000000000001946

Abstract

Goals: We aimed to evaluate symptom outcomes in those on a gluten-free diet during the 5 years after diagnosis.

Background: Celiac disease is common; however, little is known about long-term symptom outcomes.

Study: We performed a retrospective chart review on individuals with celiac disease followed at a tertiary referral center between 2012 and 2018. To minimize bias, strict inclusion/exclusion criteria were utilized. Only those with definitive biopsy-proven celiac disease, on a gluten-free diet, and with systematic follow-up were included. The standardized care at this center reduced the risk that decisions on testing and follow-up visits were determined by symptom status. Summary statistics were computed and generalized linear models with a logit link were used to associate the proportion of symptomatic visits with various covariates using R statistical programming.

Results: Of the 1023 records reviewed, 212 met inclusion/exclusion criteria; 146 (69%) were female and the mean age at diagnosis was 43 (range: 11 to 84 y old). During follow-up, over 50% remained symptomatic, with many having the same symptoms that prompted the diagnosis. The only predictors for remaining symptomatic were female sex and younger age at diagnosis. Abnormal serology during follow-up and small bowel normalization were not predictive.

Conclusions: In individuals with definitive celiac disease with systematic long-term follow-up in a Celiac Clinic, roughly half remained symptomatic despite a gluten-free diet. Many suffer from the same symptoms that prompted the diagnosis of celiac disease. Small bowel healing and abnormal serology in follow-up were not predictive of remaining symptomatic. These findings stress the importance of long-term care in celiac disease.