Follow-up exams for patients with celiac disease are often inadequate and highly variable, according to a new study in Clinical Gastroenterology and Hepatology, the official clinical practice journal of the American Gastroenterological Association (AGA).
"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 Joseph A. Murray, MD, AGAF, of Mayo Clinic and lead author of this study. "Doctors and patients need to be aware of the need for medical follow-up of celiac disease. This is a chronic disease with the possibility of long-term complications. If gastroenterologists are leading the way in the detection of celiac disease, we must improve our communication to patients to ensure that they get needed follow-up care in order to improve outcomes in celiac disease."
In this study, researchers collected data on 122 patients diagnosed with celiac disease between 1996 and 2006 in Olmsted County, MN (70 percent women, median age of 42 years). They determined the frequency at which patients received follow-up exams from six months to five years after diagnosis. Among 113 patients who were followed for more than four years, only 35 percent received follow-up analyses that were consistent with AGA recommendations.
Celiac disease occurs in the digestive system when people cannot tolerate the protein gluten. Patients diagnosed with celiac disease only represent a minority since most cases remain undiagnosed. While these patients may have a moderately increased risk of death, this risk may be higher in those with poor adherence to a gluten-free diet.
Although the only proven treatment is strict adherence to a gluten-free diet, achieving true compliance is a considerable challenge. This underscores the importance of long-term follow-up to improve compliance. However, patients with celiac disease are not followed consistently.
"This study shows that despite widespread dissemination of recommendations, it is obvious that these are not being implemented in the community. 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. 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. Anecdotally, patients with celiac disease often feel they are on their own in the management of celiac disease," added Dr. Murray.
To learn more about celiac disease, please read the AGA brochure, "Understanding Celiac Disease" at www.gastro.org/patient-center/digestive-conditions/celiac-disease