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

Misinformation from GI?


Sanders

Recommended Posts

Sanders Rookie

I just got back from my first appointment with the GI, and of course, feel more confused :) Anyone have input on the following?

1) I had blood work done through my primary care doc, and had positive EMA and positive GDP, but negative TTG (which I understand is weird, and my doc today couldn't explain why that would happen, and said the TTG is a better indicator, which I thought wasn't the case). Is TTG the best indicator?

2) He said the endoscopy is the "gold standard", of course, and scheduled me to get one next week. I am fine getting one done, in fact I would like to have 100% confirmation if possible, but he told me that if it's negative, that it means I "haven't developed Celiac yet", which from reading these forums, I know to be possibly inaccurate.

3) I pressed him about more info regarding the positive EMA, and that I have read that that is a pretty solid indicator of Celiac, with a very small margin of error. He still seemed to be of the mindset that it could also indicate just a gluten sensitivity. That isn't correct, right? EMA is specific to Celiac, not to gluten sensitivity? I said "so, with my positive blood work, and a positive response to a gluten elimination diet, if I had a negative biopsy, would that mean I don't have Celiac?" and he basically said it could just mean I'm sensitive to gluten, and they would keep an eye out.

I have made an appointment with another GI, and I'm hoping to get some better answers. I'm just frustrated that answers are so hard to get at this level.


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



Celiac.com Sponsor (A8-M):



RMJ Mentor

Some doctors won't give a celiac diagnosis without a positive biopsy, no matter what.  I was high positive on five different blood tests (TTG IgA and IgG, DGP IgA and IgG and EMA).  All values went down to normal or very near normal on a gluten free diet. I could not have a biopsy due to other health problems.  My GI will not give me a celiac diagnosis.

nora-n Rookie

The EMA is only positive with celiac

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Second chance

    3. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,602
    • Most Online (within 30 mins)
      7,748

    Dale S
    Newest Member
    Dale S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
×
×
  • 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.