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

Lost on Results

MadFuriosa
 Share

Recommended Posts

MadFuriosa Newbie
MadFuriosa
Posted

The last time I saw my doctor was a brief visit and we didn't get to discuss but he said that I am celiac and handed my results that said

IgA - TTG high

Endomysial negative

Symptoms: fatigue, MAJOR bloat, weight gain 

I decided to try going gluten free since I can't see him for another month to even discuss further testing and my symptoms are gone! It's only been 3 weeks but I feel like a different person and I'm losing weight which I haven't done in 8+ years despite trying everything.

I am afraid he will suggest a endoscopy with biopsy since I feel so good and I'm also not sure it would be necessary at this point? I'm also not sure what to ask him when I do see him? Or should I stop my trial just in case?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

The proof is in the pudding. You have a positive tTG-IGA and you feel much better after cutting out gluten. What more do you need? Ask the doctor to write in your medical chart that you have celiac disease and tell him you feel no need for the biopsy. He himself has already said you have celiac disease. Just ask him to put it in your chart.

Scott Adams Grand Master
Scott Adams
Posted

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

trents Grand Master
trents
Posted

It would be nice to have in your medical record so other doctors you may go won't look at you sideways when you tell them you have celiac disease.

frieze Community Regular
frieze
Posted
On 12/15/2022 at 5:41 PM, Scott Adams said:

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

This is, of course how it was done before the money making biopsy came into play...

trents Grand Master
trents
Posted
27 minutes ago, frieze said:

This is, of course how it was done before the money making biopsy came into play...

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Wheatwacked Veteran
Wheatwacked
Posted

Looks like a duck, quacks like a duck. You get sick eating gluten. If the doctor can't prove that it is, are you planning to eat gluten? Not proving it is, is not the same as proving it is not. Be sure to get enough of all the essential vitamins; especially D and you'll do fine. The hard part is dealing with the social abuse.

 

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted
On 12/17/2022 at 12:21 PM, trents said:

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Go back further, it was trial and error.  Endo, 1956.  Gliadin testing 1964.

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

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

      Feeling ill

      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results. When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests. Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and...
    2. Scott Adams
      - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Feeling ill

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:
    3. Scott Adams
      - Scott Adams replied to Sicilygirl's topic in Coping with Celiac Disease
      2

      fed up italian

      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant l...
    4. trents
      - trents replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Feeling ill

      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    5. trents
      - trents replied to Art Maltman's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      My 5 months of Struggle

      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,508
    • Most Online (within 30 mins)
      7,748
    Mafiaprincess
    Newest Member
    Mafiaprincess
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      fed up italian

      By Scott Adams · Posted

      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Feeling ill

      By trents · Posted

      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      My 5 months of Struggle

      By trents · Posted

      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
×
×
  • Create New...