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DENVER -- Patients with celiac disease and inflammatory bowel disease (IBD) had a tough time sticking with a gluten-free diet, a researcher reported.

Only one out of 36 people with celiac disease and IBD maintained a gluten-free diet long term in a retrospective, health records-based study, according Jonathan Montrose, DO, of the the Indiana University School of Medicine in Indianapolis.

It most likely didn't help that only six of the 36 patients said they received education from a celiac dietitian, he said at a poster presentation at the Crohn's and Colitis Congress.

"Overall, our study showed that there was suboptimal adherence to gluten-free diets," Montrose confirmed to 番茄社区app.

The lack of formal gluten-free diet education, "is something we are working on," he added. One possibility to address this issue would be the "establishment of celiac disease centers at tertiary hospitals for adequate clinical guidance," according to Montrose and colleagues.

A 2022 suggested that about 1.6% of patients with celiac disease also have IBD, they noted.

The majority of patients in the current study were white women (94% and 64%, respectively) with celiac disease plus IBD. Montrose explained that 18 patients had celiac disease plus Crohn's disease, while 18 had celiac disease and ulcerative colitis.

Perseus Patel, MD, of the University of California San Francisco, concurred that getting adults to stay on gluten-free diets is a challenge. "Unlike with children, there is no one around to say 'No, you can't have that. It doesn't fit in your diet,'" he told 番茄社区app.

"I agree that we need more education in this area," added Patel, who was not involved in the study. "We spend a lot of time educating people on celiac disease, which can be successfully treated with diet. Incumbent upon that is really an understanding of what you can and cannot eat. If you go out to eat, you often don't have many choices, so it is not always the easiest thing to do."

Montrose and colleagues looked at ICD-10 hospital codes from 2017 through 2022. On average, the diagnosis of IBD occurred about 3.6 years before the patients were also diagnosed with celiac disease.

At the first assessment of gluten-free diet education, done at about 8 months after celiac disease diagnosis, 86% of the 36 patients said they were self-taught, reporting that they learned about gluten-free diets via the internet (14%) or from books (14%). Five of 36 said they consulted a dietitian (14%) and six (17%) of 36 said they consulted with a dietitian who specialized in gluten-free diets for celiac disease.

At a second assessment of celiac disease education 3 years later, none of the patients said they had consulted with a celiac dietitian, and the same was true at the third assessment about 5 years after first diagnosis.

Montrose noted that over the course of long-term follow-up, 50% of the patients with both celiac disease and IBD needed escalation of the IBD medication to biologics and or steroid/rescue drugs, despite initiation of a gluten-free diet, Montrose reported.

"We need to further substantiate these findings with exclusive inflammatory bowel disease and celiac disease controls," he said.

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