Doctors Don’t Understand Celiac Disease & Gluten Sensitivity

By Amy Burkhart MD, RD

Patients say their doctors don’t understand celiac disease, and they really don’t understand gluten sensitivity.

Imagine having an illness that even your doctor can’t help you with. It leaves you swimming in a sea of confusion and distress. Celiac disease and gluten sensitivity are perfect examples of this problem.

When and if either is diagnosed, the next steps are unclear. The instructions to ” follow a gluten-free diet” may only be the first step. But who is guiding you beyond the start line?

A strict, gluten-free diet is complex, and the lifestyle change is overwhelming. Also, forty percent of celiac patients have ongoing symptoms after starting the gluten-free diet. Why don’t most doctors understand that?

As a board member of the Celiac Community Foundation of Northern California, I have volunteered for many years to educate physicians, dietitians, and community members on celiac disease and non-celiac gluten sensitivity.

Medical research has progressed rapidly surrounding these topics. However, the public’s understanding of “gluten” and “gluten-free“ fluctuates from understanding to scathing disbelief.

While it is true that awareness has improved, there is still controversy and misunderstanding. Nowhere is the resolution of this confusion more important than in the doctor’s office.

Research is rapidly evolving.

Celiac disease was once thought to be rare. The fact that it is actually one of the most common genetic disorders is a relatively new finding.

If a physician completed their training more than 10-15 years ago, likely, they learned very little about it. Research regarding celiac and gluten sensitivity is evolving quickly. It is an ongoing challenge for physicians to keep current on all medical topics.

Gluten sensitivity was not seen as” legitimate” until several years ago. Research now proves what patients with gluten sensitivity have been saying for years is true. “Gluten/wheat is making me sick.”

Treatment of celiac disease is not as simple as it appears.

With regards to celiac disease, physicians assume the gluten-free diet is all that is needed. They believe it is easy to understand, and a visit to the dietitian or the internet will put the patient on the road to eternal wellness.

A gluten-free diet is the treatment for celiac disease. But, the level of understanding of the diet needed for a celiac patient is deep. Most physicians know very little about nutrition. They leave the treatment entirely to someone else or the internet. Where else in medicine does this occur?

Instructing a patient about the gluten-free diet’s details would be prohibitively time consuming for a physician, and this service is best provided by a knowledgeable registered dietitian (RD). However, I think it is important for physicians to understand the basics of the diet and the social challenges associated with adhering to it.

At the point of diagnosis, a physician should be able to hand the patient a basic information sheet, a handout on reliable resources, and a dietitian referral. In some cases, psychological services may also be appropriate. I know this happens sometimes, but it should happen every time, just as it does for patients with other chronic medical conditions.

Follow-up care

There is little understanding in the medical community regarding follow-up guidelines for celiac patients. Most physicians assume a gluten-free diet treats celiac disease, and no follow-up care is needed. This goes back to a lack of education on the topic. If they assume no follow-up is needed, there is less incentive to further learn about the disease.

Celiac patients should be followed regularly. If your physician is not aware of follow-up guidelines, educate them. Make the follow-up appointment yourself and show them the guidelines. Of course, every patient is an individual, and more evaluation may be needed. Bur, these guidelines are a great starting point.

Education of doctors is needed

Some physicians still do not believe celiac disease and/or gluten sensitivity are real. This occurs more frequently with gluten sensitivity but occasionally still happens with celiac disease. I encourage you to provide high-quality educational materials to your physician if this is the case. The Celiac Community Foundation of Northern California has a page for physician education and one for patient education with recommended top resources. Email a link or print out and bring materials to your doctor.

When the topic is non-celiac gluten sensitivity, the awkward pauses between physicians and patients occur more frequently. There is confusion around this term, its definition, and its etiology. Few physicians understand the difference between celiac disease and gluten sensitivity.

Gluten sensitivity confuses and frustrates doctors and patients for several reasons:

Research is moving fast.

Our scientific understanding of non-celiac gluten sensitivity (NCGS) is changing rapidly. We now know there may be other components in the wheat grain, causing symptoms once attributed to gluten.

If a patient has gluten-sensitivity, further education/evaluation is needed to determine the cause. Gluten sensitivity may be due to reasons such as FODMAP intolerance or ATI inhibitors. Both etiologies require treatment other than a gluten-free diet.

Regardless of the cause, it is up to the physician to determine the cause of their symptoms and provide appropriate treatment.

Other practitioners fill the void

Because of the disconnect between physicians and patients on these topics, patients are seeking help outside of the traditional medical office. They are frustrated and discouraged by the lack of understanding.

They seek out healthcare from alternative practitioners, many of whom have very limited or no medical training.

By no means am I stating that alternative practitioners should not be involved in the care of these patients. Rather, I feel it is important for medical doctors to be an integral part of the care team and work with all involved.

I challenge my physician colleagues to learn more about celiac disease and gluten sensitivity. Be the primary caregivers for people with celiac disease and non-celiac gluten sensitivity.

Physicians should not be blinded by the fact that there is a fad component to the gluten-free diet. Knowledge about gluten sensitivity is evolving quickly. It is our fundamental responsibility and privilege to treat our patients with skill, knowledge, and respect.

• The education gap

Physicians have to educate themselves in order to treat patients with symptoms associated with celiac disease and non-celiac gluten sensitivity. Many physicians are unaware of the science surrounding gluten and still assume that celiac disease is the only validated health issue involving gluten or wheat.

The internet has portrayed gluten as a farce and a fad. Physicians read the Internet too. If they do not understand the science behind what they are reading, they will be misguided.

I encourage my colleagues to educate themselves on both celiac disease and gluten-related disorders. Your patients deserve it.