By Van Waffle

Dietitians and doctors say a new federal bill to extend Medicare coverage for nutritional therapy provided by a registered dietitian would provide better healthcare for Americans with celiac disease.

“The only treatment for celiac disease is the diet. And the person that’s best trained to help that patient navigate a gluten-free diet is a dietitian,” says Anne Lee, EdD, RDN, Instructor in Nutritional Medicine, Celiac Disease Center at Columbia University, New York, New York.

She says providing insurance coverage is the right thing to do, “because it ensures better healthcare for our patients. Many patients can’t afford the additional cost of a dietitian visit on top of the physician visit, on top of the cost of the gluten-free food, on top of the additional costs of just having celiac disease.”

“The gluten-free diet for celiac is like insulin for diabetics,” says Alessio Fasano, MD.

“The gluten-free diet for celiac is like insulin for diabetics,” says Alessio Fasano, MD, professor of pediatrics at Harvard Medical School, and Director of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children, Boston, Massachusetts. Therefore it is vital for a dietitian who knows the gluten-free diet to guide new patients in administering their treatment, he says.

On August 8, 2020, U.S. Senator Susan Collins (R-ME) and U.S. Senator Gary Peters (D-MI) introduced bipartisan legislation, S.4504, to expand Medicare beneficiaries’ access to Medical Nutrition Therapy (MNT), which has been shown to be a cost-effective component of treatment for obesity, diabetes, hypertension, dyslipidemia, and other chronic conditions.

In May this year, U.S. Representative Eliot Engel (D-NY) and U.S. Representative Peter King (R-NY) introduced the companion bill, H.R.6971.The Medical Nutrition Therapy Act of 2020 would expand Medicare Part B coverage of outpatient medical nutrition therapy services to a number of diseases or conditions currently not covered—including celiac disease, prediabetes, obesity, high blood pressure, high cholesterol, malnutrition, eating disorders, cancer, and HIV/AIDS. Currently, Medicare Part B only covers outpatient MNT for diabetes, renal disease, and post-kidney transplant. The legislation would also allow more types of providers—including nurse practitioners, physician assistants, clinical nurse specialists, and psychologists—to refer patients for MNT.

The importance of expanded Medicare coverage for MNT cannot be underestimated, as previous MNT legislation has led private insurers and state Medicaid programs to provide similar coverage.

“I want to thank the Senate and the House for their work on expanding Medicare’s coverage for medical nutrition therapy," states Marilyn G. Geller, Chief Executive of the Celiac Disease Foundation.

Marilyn G. Geller, Chief Executive of the Celiac Disease Foundation, states, “On behalf of the millions of people who suffer from celiac disease, I want to thank the Senate and the House for their work on expanding Medicare’s coverage for medical nutrition therapy.  It is our hope, and expectation, that this expanded coverage will encourage private insurers and state Medicaid programs to do the same, thereby saving lives while reducing utilization of hospital and physician services .”

While American celiac patients must pay for medical nutrition therapy in most cases, those receiving follow-up at celiac disease centers may receive it at no cost. Expert gastroenterologists see it as vital to bundle a dietitian visit along with the doctor’s visit at no additional charge.

“The evidence comes on the field, so to speak,” says Fasano. “We see roughly a thousand cases a year. When we are consulted for a second opinion, you will see a huge difference in what these patients are facing in terms of poor control of their symptoms, depending on if they have been guided by a dietitian or not.”

He estimates 90 percent of patients who come to the Center for Celiac Research because of poorly controlled celiac disease have never consulted a dietitian.

At the Celiac Disease Center, Lee says patient data shows nutritional improvements in iron, B vitamins, and weight in people who come to them having consulted a dietitian, compared with those who have not. These deficiencies are common in celiac patients, and a poorly managed gluten-free diet may fail to compensate.

Lee adds, “A patient’s nutrient needs change over time. It’s important that they are working with someone who can address the different physiological and nutrition needs as that patient ages over their lifespan. There are often specific things in celiac disease that are different than the regular population. We have to be more mindful of the amount of fiber in the diet because the gluten-free diet is inherently low in fiber, B-vitamins and iron. And there is the increased risk of low bone density. The patient really needs someone who has the expertise in diet and nutrition.”

Several experts interviewed said they frequently encounter patients who were originally told by the doctor who diagnosed them to go home and look up the gluten-free diet. Many are not referred to dietitians.

“All too often, people with newly-diagnosed celiac disease rely on the internet, which is fraught with misinformation,” says Trisha Lyons, RDN

“All too often, people with newly-diagnosed celiac disease rely on the internet, which is fraught with misinformation, friends who mean well but may be misinformed, or other medical providers who provide a piece of paper but don’t have the knowledge or time necessary to teach the patient what they need to learn,” says Trisha Lyons, RDN, Metrohealth Medical Center, Cleveland, Ohio, who began counseling celiac patients after she was diagnosed 20 years ago and realized she had unique qualifying experience. She adds that celiac disease, “when untreated, has potentially life-altering and life-threatening symptoms and consequences, not to mention expensive ones, which quite possibly could have been prevented with proper counseling. Not covering relatively inexpensive, preventative dietitian visits but covering the myriad of expensive consequences of poorly-treated disease is short-sighted and senseless.”

Fasano says it is a matter of social justice for the health system and a “no-brainer” to acknowledge that dietitian visits are instrumental in treating celiac disease.

Patients who live in smaller communities may be less likely to get referred to a dietitian. Amy Keller, RD, Clinical Nutrition Manager at Mary Rutan Hospital, Bellfontaine, Ohio, is the hospital’s only full-time dietitian, and has run a local celiac support group since encountering her first patient in 2010. Those referred were all diagnosed at larger hospitals such as in Columbus, but not at Celiac Disease Centers.

She says, “Patients get diagnosed. If they’re lucky, they get referred to a dietitian. Usually I have one visit with them. Typically if it’s a Medicare patient, that’s not paid for, which has been a barrier. I have then had the luxury to be able to encourage them to attend the support group if they live locally, or at least keep up with me on email. I can count on one hand, and I’ve been doing this 10 years, the number of patients where I’ve had multiple visits.”

Benjamin Lebwohl, Director of Clinical Research at the Celiac Disease Center at Columbia University , says, “Physicians can advise a patient to start or maintain a gluten-free diet, but it becomes very apparent at even the slightest bit of questioning by the patient that the physician will hit their limits of understanding the ins and outs of the diet. We need to know where our expertise ends, and how to work in a team.”

Recent research from the United Kingdom, where medical nutritional therapy is already more widely available, suggests it improves quality of life for celiac patients. However, Lebwohl argues that there should not be a burden of proof from studies when experts already know dietitian visits provide better outcomes for patients.

To ask your Members of Congress to co-sponsor the Medical Nutrition Therapy Act of 2020, visit the Celiac Disease Foundation’s Take Action Center at