Patients with celiac disease often do not receive a biopsy or nutritional recommendations at diagnosis, according to the findings of a large survey study.
Strikingly, 21% of respondents did not have a confirmatory duodenal biopsy, reported Andrew M. Joelson, MD, of Columbia University Medical Center, New York, and his associates. Gastroenterologists diagnosed 66% of biopsied patients but only 31% of nonbiopsied patients (P less than .001). “Patients require more education about management of celiac disease and referral to gastroenterologists for duodenal biopsy confirmation,” the researchers wrote in the May issue of Clinical Gastroenterology and Hepatology.
Classic small-bowel findings in celiac disease (intraepithelial lymphocytes, crypt hyperplasia, and villous atrophy) are not pathognomonic, making serology important for diagnosis. European guidelines discuss forgoing biopsy in children whose antitissue transglutaminase antibody titers are at least 10-fold above the upper limit of normal. However, the American College of Gastroenterology and the American Gastroenterological Association continue to recommend combining serology with confirmatory small bowel biopsy. The extent to which physicians follow this advice is unclear, the researchers noted.
Therefore, they analyzed data from a questionnaire posted on the Celiac Disease Foundation website during a 7-month period in 2016. Among 982 adults with self-reported celiac disease, 780 said their diagnosis included both serology and biopsy and 202 said they received serology only. Only 40% of these nonbiopsied respondents said they sought nutritional counseling at diagnosis, compared with 59% of biopsied patients (P less than .001). Patients diagnosed by serology alone also were more likely to report using dietary supplements to aid gluten digestion (20% vs. 9% of biopsied respondents; P less than .001).
These associations remained statistically significant after adjustment for age and sex, said the researchers. Nonbiopsied patients had a significantly lower odds of having been diagnosed by a gastroenterologist (odds ratio, 0.16; 95% confidence interval, 0.07-0.37) and seeking nutritional counseling (OR, 0.45; 95% CI, 0.33-0.63) and were significantly more likely to use digestive supplements (OR, 2.61; 95%, CI 1.62-4.19).
Fully 87% of respondents always followed a strict gluten-free diet, but symptoms persisted in 65% of those who were not biopsied, compared with only 51% of those who were biopsied. There were too few responses to this question for the difference between groups to reach statistical significance, but the finding might reflect the greater diagnostic accuracy of biopsy, the researchers said. However, they cautioned that none of the associations in this study were necessarily causal, diagnoses were not independently validated, and the reliability of self-reported celiac diagnosis remains unclear.
Survey respondents also were self-selected – for example, 91% self-identified as white and 60% reported having a bachelor’s degree, compared with only about 77% and one-third of adults captured by U.S. Census Bureau data from 2017.
“Although these characteristics may limit the generalizability of our findings, this study nevertheless reflects a population of celiac disease that is not typically studied, such as those not attending large academic celiac disease centers, and those diagnosed without the involvement of a gastroenterologist,” the researchers wrote. “Future studies are warranted to further characterize this population regarding the long-term consequences of forgoing the duodenal biopsy, and to develop educational interventions to promote evidence-based diagnosis and management of celiac disease.”
SOURCE: Joelson AM et al. Clin Gastroenterol Hepatol. 2018 Sep 10. doi: 10.1016/j.cgh.2018.09.006.