Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Educating Doctos

thleensd

By thleensd
in Doctors

Recommended Posts

thleensd Enthusiast
thleensd
Posted

I was diagnosed last week. Like most of you, what I have to say is, FINALLY!!!!!

...and then a whole bunch of much more colorful, much less appropriate things for the DOZENS of doctors who diagnosed everything from "nothing" to "take some metamucil" to "let's check for stroke and brain tumor" to "see a shrink". Even my naturopathic doc (who was the one that called it first) didn't tell me I needed to stay on gluten to be tested.

I'm looking forward to good health (trying to be patient!) but in the meanwhile wonder what I can do to help educate doctors. I know there are some big Celiac organizations....but what can *I* do? I've already started the educate-everyone-I-talk-to campaign.

Can someone tell me what is being done to get the info out to the medical community?

Thanks.

Two weeks gluten free down. A lifetime to go. A long, healthy one. =)

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
I was diagnosed last week.... I'm looking forward to good health (trying to be patient!) but in the meanwhile wonder what I can do to help educate doctors. I know there are some big Celiac organizations....but what can *I* do? I've already started the educate-everyone-I-talk-to campaign.

Doctors are about as hard to educate as lawyers--both groups know everything (I know, I worked for both). About all we can do is educate our own doctors and spread the word as much as we can. It is pretty hard to combat the AMA, the medical schools and "established practice".

Crystal Brown Rookie
Crystal Brown
Posted

Haha! I know how you feel.. I keep talking and talking, but I find that visuals help the most.

Celiac.org and celiaccentral.org both have fliers or brochures that you can print out. I think it's celiaccentral.org aka the National Foundation for Celiac Awareness who actually has a printout specifically geared towards those pesky, stubborn, meanie doctors. Okay, they may not be meanies, but they sure feel that way when you're convinced that it is NOT "all in your head".

Anyway, I hope this helps and good luck spreading the word to the medical community!

=)

I was diagnosed last week. Like most of you, what I have to say is, FINALLY!!!!!

...and then a whole bunch of much more colorful, much less appropriate things for the DOZENS of doctors who diagnosed everything from "nothing" to "take some metamucil" to "let's check for stroke and brain tumor" to "see a shrink". Even my naturopathic doc (who was the one that called it first) didn't tell me I needed to stay on gluten to be tested.

I'm looking forward to good health (trying to be patient!) but in the meanwhile wonder what I can do to help educate doctors. I know there are some big Celiac organizations....but what can *I* do? I've already started the educate-everyone-I-talk-to campaign.

Can someone tell me what is being done to get the info out to the medical community?

Thanks.

Two weeks gluten free down. A lifetime to go. A long, healthy one. =)

happygirl Collaborator
happygirl
Posted
Can someone tell me what is being done to get the info out to the medical community?

Welcome to the board!

NIH has launched an awareness campaign for doctors and you can read a lot about it here: Open Original Shared Link

Archived

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

Go to topic listing

  • 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. hmkr
      - hmkr replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

      The IGA tests 5 years ago were: Transglutaminase IGA (EMY IGA) (CENT-tTG), <2 Immunoglobulin A (CENT-IGA), 246 IgA Quantitative was done last month, that was 261. Is that the one you mean?
    2. trents
      - trents replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

      When you say a GI doc did an IGA five years ago and it was negative, which IGA measure do you speak of. There are several possibilities. Do you refer to the tTG-IGA? Have you had a total IGA test done? It isn't a test for celiac per se but can establish whether or not you are IGA deficient. If you are IGA deficient, it will drive individual IGA test...
    3. Scott Adams
      - Scott Adams replied to hmkr's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests...
    4. hmkr
      - hmkr posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Celiac Test Results - Thoughts?

      I had several celiac blood tests done at a rheumatologist last month. I've had many possible symptoms over the last 23 years, including GERD/LPR, constipation, and recently joint stiffness and pain in my hands. It all started during my first pregnancy. 1/160 ANA back then as well as now with no autoimmune diagnosis. I've had undiagnosed high fevers, swollen...
    5. John Scott
      - John Scott commented on dixonpete's blog entry in Pete Dixon
      5

      A video with researcher William Parker about Helminthic Therapy

      Anti-inflammatory drugs can present a raft of issues, and, unlike helminths, they are often not appropriate for long-term use. "Treatment of moderate to severe IBD involves the use of immune modulators and/or biologics, which have several toxicities and side effects, such as predisposition to infections, cancer, and demyelinating diseases in addition...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,812
    • Most Online (within 30 mins)
      7,748
    hmkr
    Newest Member
    hmkr
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • hmkr
      Celiac Test Results - Thoughts?

      By hmkr · Posted

      The IGA tests 5 years ago were: Transglutaminase IGA (EMY IGA) (CENT-tTG), <2 Immunoglobulin A (CENT-IGA), 246 IgA Quantitative was done last month, that was 261. Is that the one you mean?  
    • trents
      Celiac Test Results - Thoughts?

      By trents · Posted

      When you say a GI doc did an IGA five years ago and it was negative, which IGA measure do you speak of. There are several possibilities. Do you refer to the tTG-IGA? Have you had a total IGA test done? It isn't a test for celiac per se but can establish whether or not you are IGA deficient. If you are IGA deficient, it will drive individual IGA test scores down and can result in false positives. The tTG-IGA should always be accompanied by a total IGA test. When people are IGA deficient and actually do have celiac disease we often see it detected by the IGG tests. The same can be said if they have been skimping on gluten previous to the blood draw and, IMO, negatives in the IGA test spectrum with positives in the IGG spectrum can also point to NCGS or NCGS transitioning to celiac.
    • Scott Adams
      Celiac Test Results - Thoughts?

      By Scott Adams · Posted

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. I agree that if your biopsy ends up negative, that you still may need to be gluten-free, as you could be in the non-celiac gluten sensitivity area. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Be sure to eat lots of gluten daily until your endoscopy, otherwise you could get false negative results.    
    • hmkr
      Celiac Test Results - Thoughts?

      By hmkr · Posted

      I had several celiac blood tests done at a rheumatologist last month. I've had many possible symptoms over the last 23 years, including GERD/LPR, constipation, and recently joint stiffness and pain in my hands. It all started during my first pregnancy. 1/160 ANA back then as well as now with no autoimmune diagnosis. I've had undiagnosed high fevers, swollen lymphs nodes, ear pain, miscarriages, to name just a few more symptoms. I can't help but be upset at the many doctors I've been to that have missed this. A GI doctor only did the IgA 5 years ago, which was negative then too, and didn't do a biopsy as a result during an endoscopy shortly after. Deaminated Gliadin IgG Antibody test was 90, >15 being abnormal.   Deaminated Gliadin IgA Antibody, negative Tissue Transglutaminase IgG Antibody, negative Tissue Transglutaminase IgA Antibody, negative I'm scheduled for a biopsy at the end of January. The new GI doctor thinks if not celiac, I will still need to be gluten free the rest of my life due to the antibodies my body is producing. I feel like it's got to be celiac. I've been consuming gluten every day to prepare for this test. It can't come soon enough.  Thoughts on that IgG being positive and the others negative? I haven't gotten a clear explanation for that yet. Thanks in advance for any input!! 
    • Kiwifruit
      Years of testing - no real answers

      By Kiwifruit · Posted

      That’s good to know. Might be time to head back to my gastrointestinal doctor then.
×
×
  • Create New...