Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

Scott Adams

By Scott Adams
in Doctors

 Share

Recommended Posts

Scott Adams Grand Master
Scott Adams
Posted

Finding a doctor who truly understands celiac disease can be challenging—many still rely on outdated info or dismiss lingering symptoms.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

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,433
    • Most Online (within 30 mins)
      7,748
    Sutka
    Newest Member
    Sutka
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      Thank you for mentioning that.  My main reaction to gluten seems to be related to the skin and breaking out.  So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium.  I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale.  Recently, I've been getting migraine reactions to spinach, possibly from the histamine.  I do use Malabar spinach (not related to spinach) but only a leaf or two in foods and I don't think it has a high calcium content.  I should check into longevity spinach and Moringa again.  Some gardeners in our area grow them.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      I tried algae based calcium supplements, but because I have Dermatitis Herpetiformis I broke out with dermatitis herpetiformis blisters.  Do be careful.  Iodine, whether in iodized salt or seaweed or some types of fish, can stimulate dermatitis herpetiformis. I stick to cruciferous veggies (broccoli, kale and other green leafy veggies), but I avoid spinach.  Many people have problems with oxalate formation (kidney stones) with spinach and calcium supplements.   Do remember to take Vitamin D and Vitamin C with Calcium.  Talk to your doctor and dietitian about supplementing with Vitamin A and Vitamin K, and Boron and Magnesium as these vitamins and trace minerals are important to bone formation as well.
    • Scott Adams
      Supplements for those Diagnosed with Celiac Disease

      By Scott Adams · Posted

      Since you moved away from dairy, it's definitely a challenge to get enough calcium, and your point about its proper absorption is crucial—it's not just about intake, but also making sure it goes to the right places. Since you prefer food-based sources when possible, you could first focus on incorporating more non-dairy, calcium-rich foods like fortified plant milks or juices, canned sardines or salmon with bones, tofu made with calcium sulfate, dark leafy greens like kale and collard greens, and almonds. If you still feel you need a supplement, your research on algae-based calcium is spot-on; it's often praised for its bioavailability and balance with other trace minerals, which may help with proper absorption. While the cost is higher, you might find it's worth it as a targeted solution, potentially taken every other day or a few times a week alongside your dietary efforts, rather than a full daily dose. It's great that you're already so mindful of your nutrient sources with the Brazil nuts and seaweed—this holistic approach is the best way to build a solid nutritional foundation.
    • knitty kitty
      Major Glutening

      By knitty kitty · Posted

      So sorry to hear you are going through this!   What OTC med did you take?  
    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      Yep,yep,yep, called it from experience.  I've lived through SIBO and Candida myself.  I get a different sorts of reactions to dairy, high sugar consumption, and gluten.  I react to Casein, the protein in dairy.   Try the AIP diet.  Dr. Sarah Ballantyne designed it and is a Celiac herself.  Her book, the Paleo Approach, has been most helpful.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.