Celiac disease and gluten sensitivity: The doctor-patient disconnect
Celiac disease and gluten sensitivity: The doctor-patient disconnect
I recently gave a grand rounds lecture on celiac disease and gluten sensitivity at a local hospital. For those of you not familiar with the term, grand rounds are weekly or monthly lectures to update physicians on medical topics. As I was waiting to speak, I watched about 50 physicians and other health care providers file nonchalantly into the lecture room. Some came out of interest, others perhaps for the free lunch.
As they found their seats, I listened to comments regarding the lecture topic. I couldn’t help but overhear one practitioner utter what has become a common sentiment on this subject: “Gluten – it’s all nonsense!” I am accustomed to hearing this type of response from members of the public, and I generally smile and approach it as an opportunity for education. However, it is more discouraging to hear it from a physician, the very person who needs to have a scientifically based understanding of gluten-related disorders in order to help you.
Confusion rising even as awareness and research advance
As a board member of the Celiac Community Foundation of Northern California, I have volunteered over the last eight years to educate physicians, dietitians, and community members on the topics of celiac disease and non-celiac gluten sensitivity, as part of our celiac disease awareness campaign.
Medical research in this field has progressed rapidly during this time period. However, the evolution of the public’s understanding of “gluten” and “gluten-free“ has vacillated from confusion to understanding, back to more confusion, and now to skepticism and sometimes scathing disbelief. While it is true that awareness has improved, there is still controversy and misunderstanding. Nowhere is the resolution of this discord more important than in the doctor’s office.
Celiac disease patients: “I know more than my doctor”
In the case of celiac disease, patients often feel they have more expertise than their physicians on the topic. Why aren’t doctors more educated regarding celiac disease? The reasons are varied:
1. The research is relatively new and evolving rapidly
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 5-10 years ago it is likely they learned very little about what was presumed to be a “rare” condition. Research regarding celiac disease is evolving quickly. It is an ongoing challenge for physicians to keep current on all medical topics.
2. The treatment is not as simple as it appears
Physicians assume the gluten-free diet is all anyone with celiac disease needs. 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. Yes, 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 and leave the treatment entirely to someone else. 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 contributes to lack of interest
There is a little understanding in the medical community regarding the need for follow-up care with celiac patients. Most physicians assume that celiac disease is fully treated by the 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 and make the follow-up appointment yourself. Basic guidelines needed for follow-up care are provided by the University of Chicago Celiac Disease Center and Columbia University Celiac Disease Center. Of course, every patient is an individual and more evaluation may be needed but these guidelines are a great starting point.
4. The most basic knowledge is lacking
Some physicians presume celiac disease is not real. Yes, there are still physicians who do not believe it is a valid condition. 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 physician and patient occur more frequently. There is confusion around this term, its definition and 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 in its infancy and changing rapidly. We now know there may be other components in the wheat grain that are causing symptoms once attributed to gluten, including FODMAPS. Patients may also be reacting to other proteins in the grain itself. What we know so far was described by top researchers in an October 2013 article titled “Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders.”Regardless of the cause, the patient feels sick. It may not matter to them which part of the grain they are reacting to; they just know they feel sick when they eat wheat. In the case of a FODMAP intolerance, the treatment is very different than a gluten-free diet. It is up to the physician to best determine the cause of their symptoms and provide appropriate treatment.
2. Other practitioners are filling the void
Because of the disconnect between physician and patient on these topics, patients are seeking help outside of the traditional medical office. They are frustrated and discouraged by the lack of understanding, and seek out healthcare from alternative practitioners, many of whom have very limited or no medical training. What they do have is the ability to listen and be compassionate. 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, that I feel it is important for medical doctors to be an integral part of the care team.
I challenge my physician colleagues to learn more about celiac disease and gluten sensitivity and be the primary care givers 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, and that 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 non-celiac gluten sensitivity. This is such a new topic that 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 just like you do. 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 grand rounds, 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.
THIS ARTICLE IS COPYRIGHTED BY AMY BURKHART, MD, RD.