How to Find a Celiac-Savvy Doctor – Tips & Resources

[Scott Adams]

Finding a doctor who truly understands celiac disease can be challenging—many still rely on outdated info or dismiss lingering symptoms. Here's what's worked for me and others in the celiac community:

1. Start with a Gastroenterologist (GI) Specializing in Celiac

• Look for GIs affiliated with celiac research centers (e.g., Columbia University, Mayo Clinic, University of Chicago Celiac Disease Center).
• Ask if they follow updated guidelines (e.g., repeat endoscopy/biopsy when needed, monitor for refractory celiac, nutrient deficiencies).

2. Leverage Celiac Organizations

• Celiac Disease Foundation
• Beyond Celiac
• Coeliac UK (UK): Healthcare Professional Network

3. Ask Local Celiac Support Groups

• Facebook groups or Meetup.com chapters often share doctor recommendations (e.g., "Seattle Celiac Group").
• Example: "My GI in Boston orders tTG-IgA + DGP-IgG and checks my villi healing progress yearly."

4. Red Flags to Avoid

• Doctors who say: "Just avoid gluten, you'll be fine" without follow-up testing.
• Those who dismiss non-GI symptoms (e.g., neuropathy, DH rash, fatigue).

Pro Tip: For complex cases (e.g., refractory celiac), seek a university hospital celiac program.