Proper Follow-up Key to Celiac Care

Celiac patients often have inconsistent examinations after initial diagnosis

/ Author:  / Reviewed by: Robert Carlson, M.D

(RxWiki News) For those with celiac disease, the protein gluten triggers a reaction that damages the small intestine’s lining. Follow-up evaluation has been shown to improve this permanent condition.

Celiac patients have an intolerance for eating gluten, which is found in wheat, barley, rye and possibly oats.They do not absorb nutrients properly and can become malnourished.

The only proven treatment for the condition is sticking to a gluten-free diet. Patients can better manage their condition by reviewing follow-up strategies with a health care provider.

A recent study, however, shows that patients may not be receiving recommended evaluations for improving their treatment.

"Consider regular exams for effective treatment."

Joseph A. Murray, MD and an American Gastroenterology Association Fellow at the Mayo Clinic in Rochester, Minn., led an investigation reviewing data on 122 patients with celiac disease. The patients were diagnosed between 1996 and 2003 in Olmsted County, Minn..

The American Gastroenterological Association (AGA) states that follow-up is necessary to confirm the diagnosis and to help patients realize if they are managing their condition correctly.

Scientists found that 41 percent of patients in this study had follow-up visits with a health care provider one year after diagnosis, and about one-third were assessed for keeping up with a recommended gluten-free diet.

Five years after diagnosis, 89 percent had follow-up visits, and 8 out of 10 were evaluated on their gluten-free diet.

Despite these high rates of follow-up visits, only 35 percent of 113 patients who had four years of follow-up had evaluations that were consistent with AGA recommendations. Researchers found that 58 percent had “irregular” follow-up evaluations, and 7 percent had no celiac disease follow-up evaluations.

Dr. Murray’s team reported that basic features of a follow-up visit often were absent. For example, 37 percent of all patients had at least one celiac disease follow-up visit with no documentation of how they were complying with a gluten-free diet.

The AGA and National Institutes of Health simply suggest periodic visits at regular intervals with a doctor or dietician to make sure celiac patients are keeping up with gluten-free diets and receiving counseling.

To evaluate celiac patients, gastroenterologists may also use intestinal biopsy (taking a small tissue sample), and serology (a blood test used to detect the presence of antibodies).

However, authors of this research note that there is no clear agreement among medical professionals as to when these procedures should be used in follow-up procedures.

Based on the results of this study, Dr. Murray and his colleagues concluded that the practice of medical follow-up evaluation in patients with celiac disease is highly variable and often inadequate.

“In the group of celiac disease patients that we observed, we found that very few of them had medical follow-up that would be in keeping with even the most lax interpretation of current guidelines,” said Dr. Murray. “Doctors and patients need to be aware of the need for medical follow-up of celiac disease.”

He said that he has heard from patients that they often feel “on their own” in managing their condition.

“We in gastroenterology with the expertise in celiac disease need to encourage active follow-up of these patients and improve the overall quality of medical care provided to patients with this chronic disease,” he said. “It should not be different from other chronic conditions for which medical follow-up is a given, such as liver disease, inflammatory bowel disease or even gastroesophageal reflux disease. “

This study was published in the August 2012 issue of Clinical Gastroenterology and Hepatology, the official clinical practice journal of the American Gastroenterological Association (AGA). No conflicts of interest were reported.

Reviewed by: 
Review Date: 
August 6, 2012
Last Updated:
August 9, 2012