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Regular celiac disease follow-up often is lacking, moreover, when follow-up visits do occur, they are likely to be insufficient, without assessment of serology or dietary compliance.

The Mayo Clinic in Rochester, Minn., and their colleagues looked at 5 years of medical records of doctor visits from 122 patients with celiac disease recruited through the Rochester epidemiology project database, which links to medical records at the Mayo Clinic and the Olmsted Medical Center. Of the 122 patients, 70% were women. The median age was 42 years.

Cases with any degree of villous atrophy associated crypt hyperplasia, and an increased number of intraepithelial lymphocytes were confirmed by intestinal biopsy, plus clinical or histologic improvement after the introduction of a gluten-free diet, as well as positive endomysial or tissue transglutaminase antibodies.

“Celiac disease visits” were defined as visits with a primary care physician or gastroenterologist that addressed the disease; or with any other physician or midlevel provider (for example, a dietitian) who documented assessment of celiac symptoms and compliance with a gluten-free diet, and/ or tested relevant celiac disease serologies.

Patients were classed as having either no follow-up or “regular” follow-up, meaning two or more celiac disease follow-up visits and two or more serologies at least 6 months apart during the 5-year study period, beginning 6 months after diagnosis. A third category, “irregular” follow-up, was defined as some follow-up visits or serologies not meeting the minimal criteria of the previous definition.

Overall, there were 314 celiac disease visits for the 122 patients during the 5-year follow-up period, mostly with primary care providers (n= 175; 56%) and gastroenterologists (n=122;39%).

Among patients with at least 4 years of follow-up after diagnosis (n=113) calculated that just 40 (35%) had “regular” follow-up, and eight patients (7%) had no celiac disease follow-up. A complete blood count was assessed in 62% of all follow-up visits, and tissue transglutaminase antibodies, trasaminase, thyroid-stimulating hormone, and ferritin were each assessed in about one out of every two or three visits.

Some form of serology was tested in 147 (47%) of 314 follow-up visits. Moreover, 42 patients (37%) had at least one celiac disease visit without any documentation of gluten-free diet compliance. Having diarrhea at time of diagnosis was significantly associated with regular follow-up, while having family history of disease was non-significantly associated with irregular or no follow-up.

“Age, sex and indication of a dietitian consult and other gastrointestinal symptoms at diagnosis (for example, bloating, nausea, vomiting, weight loss, abdominal pain) were not significantly associated with follow-up categories.”

And while the researchers conceded that the review was limited to patients in a district area, “Olmsted county is a unique population in that there is tremendous access to medical care, fewer uninsured, and overall higher degrees of education and wealth.” “These factors would likely enhance a patient probability of receiving follow-up medical care, implying that our estimates are an overstatement of follow-up.”