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

Educating Doctos


thleensd

Recommended Posts

thleensd Enthusiast

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
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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,210
    • Most Online (within 30 mins)
      7,748

    BJ OConnor
    Newest Member
    BJ OConnor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.