Doctors Misunderstand Celiac Disease & Gluten Sensitivity
Patients feel 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 conundrum. 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 startline? A strict, gluten-free diet is difficult and the lifestyle change overwhelming. In addition, forty percent of celiac patients have ongoing symptoms after starting the gluten-free diet. Why don’t most doctors outside of major celiac centers understand that?
Not long ago, I was giving physicians a lecture on celiac disease and gluten sensitivity at a hospital. I couldn’t help but overhear one practitioner utter: “Gluten – it’s all nonsense!” I am accustomed to hearing this type of response from members of the public. I generally smile and approach it as an opportunity for education. However, it is discouraging to hear it from a physician, the very person who needs to have a scientific understanding of these disorders in order to help you.
Confusion continues even as awareness and research advance
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 the topics of 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.
Patients: “I know more than my doctor”
Free Article Available At Bottom of This Post On The Topic Of Celiac Vs. Gluten Sensitivity. Please Send It To Providers To help Educate. May Is Celiac Disease Awareness Month
In the case of celiac disease and gluten sensitivity, patients often feel they have more expertise than their doctors on the topics. Why aren’t doctors more educated regarding these disorders? The reasons vary:
1. Research is rapidly evolving
The prevalence of 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 years ago it is likely they learned very little about what was presumed to be a “rare” condition. 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 even deemed 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”.
2. Treatment 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. The 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 details of the gluten-free diet 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 referral to a dietitian. 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.
3. Lack of follow-up
There is a little understanding in the medical community regarding follow-up guidelines for celiac patients. Most physicians assume celiac disease is treated by a gluten-free diet 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 learn about the disease further.
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.
4. The most basic knowledge is lacking
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.
Non-celiac gluten sensitivity: confusion reigns
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 is a source of confusion for physicians and patients alike for several reasons:
1. Research on non-celiac gluten sensitivity is developing quickly
Our scientific understanding of non-celiac gluten sensitivity (NCGS) is changing rapidly. We now know there may be other components in the wheat grain that are 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 best determine the cause of their symptoms and provide appropriate treatment.
2. 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. Physicians are then frustrated by the information and diagnoses their patients bring back. 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.
3. 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 to close the gap.
At the end of the day
I am happy to report that at the end of the lecture, the reception was overwhelmingly positive. The practitioner who had walked in describing gluten as “nonsense” was very kind and said, “I now understand.” The physicians were appreciative of the information, stating they wished there was more time to ask questions, as they had many. They validated the fact that the topic was confusing and were grateful for the clarity I was able to provide. For these reasons, I will continue to educate my community and colleagues on the topics of celiac and non-celiac gluten sensitivity. I encourage you to do the same.
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THIS ARTICLE IS COPYRIGHTED BY AMY BURKHART, MD, RD.
Dr. Amy Burkhart is a doctor (M.D.), Registered Dietitian, R.D., and fellowship-trained in integrative medicine. She specializes in treating chronic digestive disorders from an integrative/functional medicine perspective. She is a specialist In celiac disease and gluten/wheat-related disorders.