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

My Doctor Has No Idea What He's Talking About!

*lee-lee*

Recommended Posts

*lee-lee* Enthusiast
*lee-lee*
Posted

ooh, i am so mad right now!!

My GI doctor just called with the results of my genetic testing. (it was done through Prometheus Labs.) He said i have 1 copy of the gene but insists i don't have Celiac. Apparently, according to him, i'm ok to consume all the gluten i want. he says it won't do any intestinal damage or cause long-term problems but i could develop it in the future....

i specifically said, "so even though the blood was positive for antibodies and i have one of the genes, because my biopsy was negative, that means i don't have it?" his reply? "Yes." Then he said maybe i should be tested again in 5 years.

i don't get it. i just don't get it. Or maybe HE doesn't get it. What do all you Celiac Experts say?

Either way, I am done with the testing. I am on the diet and responding very well. Nothing will make me go back to gluten now.

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

I just cant comment....I get in trouble when I say what I feel about most doctors. :o

jerseyangel Proficient
jerseyangel
Posted
Either way, I am done with the testing. I am on the diet and responding very well. Nothing will make me go back to gluten now.

I agree with you! With positive blood work, a gene and positive response to the gluten-free diet you are Celiac. Some doctors still need that "gold standard" positive biopsy--but as we know it's hit or miss and can never rule out Celiac.

*lee-lee* Enthusiast
*lee-lee*
Posted
  • Author

Come on Shay! Tell us how you really feel! :P

My doctor is really nice but i've lost faith in him. Luckily, i recently moved so i don't have to go back to him. And i'm going to my first support group meeting on Wednesday so i'm hoping to learn of a couple good doctors in my area.

i'm thinking of changing my name to Dr_i_love_bread. I might as well, considering i diagnosed myself. LOL :D

ShayFL Enthusiast
ShayFL
Posted

See I was told for over 10 years that there was NO WAY I could be hypothyroid because I was a. too thin and b. not constipated

Well I was VERY hypothyroid and my symptoms that are related to thyroid resolved when I reached a good level of Armour. 4 different doctors told me that I was not hypothyroid.

Now I cannot use the word I want to use.........#$%#!! :P

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total...
    3. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

      hi, i want to say thank you to you and @trents . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood t...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Just diagnosed today

      Thank you this really helped.
    5. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong. yeah I think we had better test us and the other kids as well.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748
    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Just diagnosed today

      By JoJo0611 · Posted

      Thank you this really helped. 
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.