A celiac doctor can be the key to unlocking answers when living with celiac disease or gluten sensitivity feels like an unsolvable puzzle. For many, the journey begins with vague instructions to “follow a gluten-free diet,” but the reality is far more complicated. Without expert guidance, the diet and lifestyle changes can feel overwhelming, and the road to better health unclear. Seeking out a specialist ensures you have the support and knowledge to navigate this challenging condition and take control of your well-being.
But, finding a physician familiar with celiac disease can be challenging for several reasons. Let’s discuss those reasons and give you options for locating a celiac specialist.
Medical Training On Gluten Disorders Is Limited
Celiac disease is one of the most common genetic disorders
If your physician completed their training more than 10 to 15 years ago, chances are they learned very little about celiac disease. Research on celiac and gluten sensitivity has advanced rapidly in recent years, making it a challenge for doctors to stay up-to-date on every medical topic.
In fact, gluten sensitivity wasn’t even widely recognized as a legitimate condition until recently, leaving many patients navigating their symptoms without the guidance they need.
Some physicians still do not understand the symptoms of celiac disease and question if gluten sensitivity is real. But we now know gluten can make people ill, even if they do not have celiac disease.
Patients Often Know More Than Their Doctor
Awareness has improved, but controversy and misunderstanding still linger. Nowhere is it more crucial to resolve this confusion than in the doctor’s office.
As a board member of the Celiac Community Foundation of Northern California, I’ve spent many years volunteering to educate physicians, dietitians, and community members about celiac disease and non-celiac gluten sensitivity.
While medical research on these topics has advanced rapidly, public understanding of “gluten” and “gluten-free” swings wildly—ranging from informed awareness to outright skepticism.
Amy Burkhart MD RD
Celiac Disease
A gluten-free diet is the treatment for celiac disease, but it requires a deep understanding that most physicians lack. Many leave the details to the internet. In what other area of medicine does this happen?
Treating celiac disease is far from simple. Many physicians assume that following a gluten-free diet is straightforward and believe patients can manage with advice from information found online. However, the reality is much more complex.
Teaching the details of a gluten-free diet can be too time-consuming for a physician, which is why this role is best suited to a knowledgeable registered dietitian (RD). That said, it’s crucial for physicians to understand the basics of the diet and the social challenges that come with adhering to it.
At the time of diagnosis, physicians should provide patients with a basic information sheet, reliable resources, and a referral to a dietitian. In some cases, psychological support may also be necessary. While this level of care does happen occasionally, it should be the standard for every patient with celiac disease, just as it is for other chronic conditions.
For more resources, visit the Celiac Community Foundation of Northern California.
Amy Burkhart MD RD
Follow-up Care For Celiac Disease
Celiac patients should receive regular follow-up care. If your physician isn’t familiar with the recommended guidelines, share the celiac disease follow-up guidelines.
Many doctors assume that a gluten-free diet is sufficient treatment and that no further care is needed—a misconception rooted in a lack of education about the disease. Without recognizing the need for follow-up, there’s little motivation to learn more about celiac disease.
Take the initiative to schedule follow-up appointments and bring the guidelines with you. While every patient’s needs are unique and may require additional evaluation, these guidelines provide an excellent starting point.
Amy Burkhart MD RD
Non-Celiac Gluten Sensitivity
When the topic is non-celiac gluten sensitivity, awkward pauses between physicians and patients happen more often. There is confusion about what the term means, its definition, and its causes. Many physicians struggle to differentiate between celiac disease and gluten sensitivity.
If a patient has gluten sensitivity, further evaluation is needed to determine the cause.
Our understanding of non-celiac gluten sensitivity (NCGS) is evolving quickly. We now know that other components in the wheat grain may be responsible for symptoms once thought to be caused by gluten.
Gluten sensitivity could also be linked to factors like FODMAP intolerance or ATI inhibitors, which require treatments beyond a gluten-free diet.
Ultimately, the physician must determine the cause of symptoms and provide the appropriate treatment. Working with a celiac doctor makes getting an accurate diagnosis easier.
Amy Burkhart MD RD
Without A Celiac Doctor, Other Practioners Fill The Void
Because patients are frustrated and discouraged by the lack of understanding, they seek help outside the traditional medical office.
Many patients turn to alternative practitioners or online bloggers for healthcare advice, many of whom have limited or no medical training.
I’m not suggesting that alternative practitioners or online information shouldn’t be part of a patient’s care. However, I believe it’s crucial for medical doctors to be central to the care team, collaborating with everyone involved. To do this effectively, doctors must first educate themselves to provide accurate, reliable information. Online support groups and bloggers can also be valuable, especially for practical needs like product recommendations,gluten-free travel tips and gluten-free restaurant options
I challenge my fellow physicians to learn more about celiac disease and gluten sensitivity. Let’s be the primary caregivers for those living with celiac disease and non-celiac gluten sensitivity.
Physicians shouldn’t be swayed by the fact that the gluten-free diet has gained attention as a trend. Knowledge about gluten sensitivity is advancing rapidly, and it’s our responsibility—and privilege—to treat our patients with skill, knowledge, and respect.
Amy Burkhart MD RD
Doctors Need More Training On Celiac & Gluten Disorders
Doctors need more training on celiac disease and gluten-related disorders
Physicians must educate themselves to effectively treat patients with symptoms related to celiac disease and non-celiac gluten sensitivity. Many doctors are still unaware of the science behind gluten and assume that only celiac disease is a validated health issue involving gluten or wheat.
The internet has often portrayed gluten as a fad, and unfortunately, many physicians also rely on online information. Without understanding the science, they can easily be misled by inaccurate or incomplete sources.
I urge my colleagues to take the time to learn about both celiac disease and gluten-related disorders. Your patients deserve informed care and accurate treatment. It’s not just a matter of keeping up with the times; it’s about providing the best possible care for those who rely on us.
Find A Celiac Doctor And Help WIth Gluten DIsorders
- The Celiac MD My website has numerous articles about celiac disease, gluten-related disorders, and related health issues.
- Celiac Testing Explained
- The Celiac Community Foundation of Northern California has a page for physician education and one for patient resources.
- Beth Israel Harvard Celiac Center
- Celiac Disease Foundation
- Columbia University Celiac Center
- Children’s Hospital Boston Celiac Disease Program
- Children’s Hospital of Philadelphia Center for Celiac Disease
- Children’s National Medical Center Celiac Disease Program, Washington, DC
- Cincinnati Children’s Celiac Disease Center
- Colorado Center for Celiac Disease at Children’s Hospital Colorado
- Mayo Clinic Celiac Care
- Stanford University Celiac Clinic
- Stanford Children’s Health Center for Pediatric IBD and Celiac Disease
- UCLA Celiac Collective
- University of Chicago Celiac Disease Center
- Kogan Celiac Center at Barnabas Health Ambulatory Care Center, New Jersey
- MassGeneral Hospital (Harvard) for Children Center for Celiac Research and Treatment *
- McMaster University Farncombe Family Digestive Health Research Institute Celiac Disease Clinic
- Thomas Jefferson Univ. Hospitals Celiac Center, Philadelphia
- UCSF Benioff Children’s Hospital Oakland Gastroenterology Clinic
- UCSF Benioff Children’s Hospital San Francisco Pediatric Celiac Clinic in the Gastroenterology and Liver Clinic
- UCSF Madison Clinic for Pediatric Diabetes – Celiac Program
- University of Iowa Carver College of Medicine: Celiac Disease Clinic at the James A. Clifton Center for Digestive Diseases
- Vanderbilt University Medical Center Celiac Disease Clinic
- Gluten-free watchdog: Unbiased gluten-free food testing information for consumers
- Your doctor: Education of doctors is needed. I encourage you to provide high-quality educational materials to your physician. Email links or print out and bring materials to your doctor