A recent Mayo Clinic study finds that 65 percent of celiac disease patients do not receive adequate long-term care following their diagnosis.
Dr. Joseph Murray, lead author of the study published in Clinical Gastroenterology and Hepatology, said the results clearly show that celiac patients are not being tested frequently enough to ensure that no complications have arisen due to the disease. For example, osteoporosis and anemia may develop if patients are continuously exposed to even small amounts of gluten. Since strict avoidance of the protein is difficult, testing is crucial.
In a news release, Dr. Murray 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. Anecdotally, patients with celiac disease often feel they are on their own in the management of celiac disease.”
The study looked at data on 122 celiac patients who were diagnosed between 1996 and 2006 and the number of follow-up exams they received between six months and five years after their initial diagnosis.
Dr. Margot Herman, who also worked on the study, said in a video  that the American Gastroenterological Association’s guidelines recommend that celiac patients to receive periodic visits with a clinician, dietitian, as well as blood and other testing. But in reality, she notes, in a five-year period, only about one-third of patients receive this kind of care.
As well, fewer than a quarter of the patients in the study had bone density scans in the five years after diagnosis. “It was remarkable how little follow-up these people were getting,” Dr. Herman said.
“Our study points out an area for improvement in medicine, and particularly for these patients in terms of their long-term disease management,” she said.