How To Find A Celiac Doctor

By Amy Burkhart MD, RD Dr. Burkhart is the only physician in the United States who is also a registered dietitian and board-certified in integrative medicine.

If you are living with celiac disease or gluten sensitivity and still searching for real answers, you are not alone. Finding a celiac doctor who truly understands these conditions remains a challenge for many patients.

Often, the journey starts with a brief instruction to “follow a gluten-free diet” and then silence. No roadmap. No follow-up plan. No explanation of why symptoms may persist. That gap in care is not a reflection of the patient’s effort; it reflects a genuine knowledge gap in standard medical training when it comes to gluten-related disorders.

This article explains why that gap exists, what comprehensive celiac care should look like, and how to locate a celiac specialist who can help you.

Most physicians received little to no training on celiac disease

Celiac disease is one of the most common genetic disorders in the world, yet it remains chronically underdiagnosed and poorly managed. Estimates suggest that only 18% of people who have celiac disease are properly diagnosed. With approximately 70 million people worldwide living with the condition, that means roughly 57 million of them are either misdiagnosed or completely unaware of their diagnosis.

The core problem: most physicians received little to no training on celiac disease, particularly those who completed their medical education more than 10 to 15 years ago. The research landscape has shifted dramatically in recent years, making it genuinely difficult for practitioners to stay current on every evolving topic, especially one as nuanced as gluten-related illness.

Non-celiac gluten sensitivity (NCGS) was not even widely recognized as a legitimate condition until recently, leaving entire categories of patients without a credible diagnosis or treatment path.

A celiac doctor, a physician with specialized expertise in celiac disease and gluten-related disorders, approaches your care in ways that a general practitioner typically cannot. Here is what that looks like in practice:

Many patients are told they are “gluten intolerant” without a proper workup. A celiac specialist knows the difference between celiac disease and non-celiac gluten sensitivity, orders the correct tests, and interprets results in their clinical context. Proper celiac testing requires that the patient still be consuming gluten, something many patients are not informed of before testing, leading to false negatives.

Genuine Guidance on the Gluten-Free Diet

Managing a strict gluten-free diet is far more complex than most physicians acknowledge. Cross-contamination, hidden gluten sources, label reading, eating out safely, and social challenges — these are daily realities for celiac patients. A celiac doctor understands this and coordinates care with a knowledgeable registered dietitian to provide practical, evidence-based guidance rather than leaving patients to rely on internet searches.

Investigating Persistent Symptoms

When symptoms continue despite strict adherence to a gluten-free diet, most general physicians are at a loss. A celiac doctor knows to look beyond the obvious. Ongoing symptoms may be linked to FODMAP intolerance, ATI inhibitors (amylase-trypsin inhibitors) in wheat, SIBO, micronutrient deficiencies, or other overlapping conditions. Identifying the true cause is essential for effective treatment.

Structured Follow-Up Care

Celiac disease requires ongoing monitoring not just a one-time diagnosis and a handout. A qualified celiac specialist follows established follow-up guidelines, monitors for complications, checks for associated autoimmune conditions, and tracks intestinal healing over time. This level of care is the standard; it should not be the exception.

Physicians have a professional responsibility to stay informed. Celiac disease is common, serious, and treatable.

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. When patients cannot find reliable medical guidance, they turn elsewhere to online support groups, bloggers, alternative practitioners, and social media. These communities provide real value, particularly for practical needs like product recommendations, gluten-free travel tips, and restaurant guidance. But they are not a substitute for individualized medical care.

The gluten-free diet has been misrepresented as a trend, and that cultural noise has caused some physicians to dismiss their patients’ symptoms rather than investigate them. We now have strong scientific evidence that gluten can make people ill even in the absence of celiac disease and that the mechanisms of non-celiac gluten sensitivity are more complex than once understood.

Patients deserve care grounded in current evidence, not outdated assumptions.

Celiac disease is most commonly managed by a gastroenterologist, a specialist in digestive health. However, not all gastroenterologists have deep expertise in celiac disease specifically. A physician who focuses on celiac disease and gluten-related disorders, sometimes referred to as a celiac doctor or celiac specialist, will provide the most comprehensive care. An integrative medicine physician who also holds expertise in nutrition can be a valuable addition to the care team.

Do I need a specialist, or can my primary care doctor manage celiac disease?

Your primary care physician can play an important role, but celiac disease is a complex, lifelong condition that benefits from specialized knowledge. Many PCPs are not trained in the nuances of the gluten-free diet, the causes of persistent symptoms, or the appropriate follow-up monitoring. For newly diagnosed patients or those with ongoing symptoms, working with a celiac doctor or celiac specialist — in addition to a knowledgeable registered dietitian is strongly recommended.

Why do I still have symptoms on a gluten-free diet?

Approximately 40% of celiac patients continue to experience symptoms after starting a gluten-free diet. Common reasons include inadvertent gluten exposure, FODMAP intolerance, SIBO (small intestinal bacterial overgrowth), micronutrient deficiencies, or other overlapping gastrointestinal conditions. A qualified celiac doctor can help identify and address the underlying cause.

Is non-celiac gluten sensitivity a real condition?

Yes. Research has confirmed that gluten and other wheat components can cause illness in individuals who do not have celiac disease. Non-celiac gluten sensitivity (NCGS) is an evolving diagnosis, and its exact mechanisms are still being studied. Components such as ATI inhibitors and FODMAPs in wheat may contribute to symptoms. A celiac doctor stays current on this research and can provide an accurate, individualized assessment

If you are searching for a celiac doctor, the following resources are a strong starting point. These institutions have dedicated celiac programs staffed by physicians with specific expertise in gluten-related 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
• 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

The Bottom Line: You Deserve a Celiac Doctor Who Is Informed

Celiac disease and gluten-related disorders are real, well-documented medical conditions that affect millions of people worldwide. Science is advancing rapidly, and patients deserve physicians who are keeping pace with it.

If your current physician dismisses your symptoms, is unfamiliar with the follow-up guidelines, or leaves you to manage this condition alone, it is appropriate to seek additional support. You are not asking for too much. You are asking for the standard of care every celiac patient deserves.

Working with a knowledgeable celiac doctor, one who understands both the medical and nutritional dimensions of this disease, can make an extraordinary difference in your long-term health and quality of life.