A study by Beyond Celiac that cconcludes follow-up care for celiac disease patients is inadequate was published today in the journal, BMC Gastroenterology.

More than one out of four celiac disease patients diagnosed at least five years ago have not had follow-up healthcare for the condition in the past five years, the study by Beyond Celiac and other researchers found.

Twenty-seven percent of nearly 1,500 adults with celiac disease surveyed for the study did not see a healthcare provider, and most said the reason was that they “were doing fine on their own.” Others said they did not visit a doctor or dietitian because “they did not need to, their provider was not knowledgeable or previous visits were not helpful.”

“Celiac disease patients are left on their own to manage a serious, chronic, lifelong autoimmune disease, something that would not happen with other conditions,” said Alice Bast, Beyond Celiac CEO. “Something has to be done to change that and this study is a wake-up call for healthcare providers who don’t take celiac disease seriously. They often diagnose and then lose track of their patients.”

Read More: Why many celiac disease patients are managing the condition on their own

Overall, the study reflects a state of celiac disease management in which it takes many years to be diagnosed, physicians are not knowledgeable about the condition and aren’t helpful even when follow up care takes place.

Those who don’t get follow-up care could unknowingly have vitamin, mineral and bone density deficiencies, as well as intestinal damage and other autoimmune conditions, all of which threaten their health.

Study results were initially presented earlier this year at Digest Disease Week. The results emphasize the need for greater access to high quality celiac disease care and highlight the opportunity for patient advocacy groups such a Beyond Celiac to bring together patients and health care providers to improve management of celiac disease, study authors conclude.

Listen to study authors discuss why follow-up care is critical

Beyond Celiac recently focused its mission on uniting with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure for celiac disease.