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.

Having a relative with celiac disease increases your risk of developing celiac, but many parents, siblings and family members are resistant to getting tested.

Earlier this year, NFCA collaborated with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) in Boston to address that challenge through guiding the work of Claudia Dolphin, a graduate student from Emerson College’s Master’s in Health Communication program. Claudia’s research project “Screening for Health: Attitudes and Beliefs of Non-Participants in Disease Testing” examined the thoughts and attitudes of family members who had not been tested for celiac disease despite having a relative with the disease.

The study revealed that many family members were unaware that undiagnosed celiac disease often presents without any outward symptoms, and 64 percent of those surveyed said they would get tested for celiac disease if a family member asked them to.

In response to those results, Claudia developed the tools for diagnosed individuals to talk with their family members about celiac disease testing. NFCA is excited to announce the launch of this content in the form of new webpages and a Printable Guide. In addition, there is a new webpage and Guide to help your family members talk to their doctors about getting tested for celiac.

The NFCA and BIDMC teams hope that these new resources will help you begin this important conversation with your relatives. It could be a life-saving chat!

View the new webpages:

Celiac Disease in Families – Includes a Printable Guide that family members can bring to their doctors
Talking to Your Family About Celiac Disease Testing – Includes a Printable Guide with talking points to start your conversation with relatives
Who is at Risk? – Lists risk factors for celiac disease, including family history

Researchers at the University of Rome collected saliva samples from 4,048 children between the ages of 6 and 8 years old.

For those that tested positive to certain markers of the disease, the results were confirmed through the standard biopsy via endoscopy. The diagnosed children were put on the gluten-free diet, which those with celiac disease must follow to maintain their health.

Considering the increasing rate of celiac disease, researchers have been eager to find a non-invasive approach to screen for this autoimmune condition.

Buoyed by the results, they concluded: “it is possible to perform a powerful, simple, well-accepted, and sensitive CD screening using saliva.” See the study here.