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

Blood and endoscopy results

LeahMc
 Share
Go to solution Solved by Scott Adams,

Recommended Posts

LeahMc Newbie
LeahMc
Posted

Hi all,

I've been visiting this site for awhile but finally have something to say.  Apologies for length.

I've been seeking a diagnosis or at least an idea of what is wrong for years now.  Extreme fatigue, anemia, b12 deficiency off and on, years of diarrhea etc.  Finally an internal medicine doc sent me for celiac blood test just to rule out.

2 blood tests in a row came back what the lab rules as "borderline".

Tissue Transglutaminase Ab IgA  13.3  Reference units: <12.0 U/mL  Borderline

Referred to gastro for endoscopy.  He greets me in the hospital and says he's sure it's not celiac and since I was diagnosed with IBS before, that's definitely it.

Pathology results:

Duodenum, normal.

Duodenum, bulb, mucosal biopsy: duodenal mucosa with increased intraepithelial lymphocytes (about 40/100 enterocytes) and mild villous blunting without crypt hyperplasia (see Comment)   Specimen B: The overall histological findings are non-specific but may represent early/evolving Celiac disease, non-diagnostic sample of Celiac disease, irritation from stomach acid, infection, drugs, or others. Correlation with clinical and other laboratory findings is recommended.

Gastro calls to say it's not celiac and "good luck".

Internal medicine says he still thinks it is and instructs to go on gluten free diet for 3 months to see if the blood test results change.   Just got those:

Tissue Transglutaminase Ab IgA  4.4  Reference units: <12.0 U/mL  Negative

I am feeling better every day so I'll be staying on gluten free no matter what but this looks likely to me.  Thoughts?

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

Celiac.com Sponsor (A8-M):


plumbago Experienced
plumbago
Posted

Looks to me like this is celiac. Go for a second opinion. Preferably someone with experience dealing with celiac disease.

trents Grand Master
trents
Posted

Realize that once you have started on a gluten-free diet you will invalidate any future testing for celiac disease. And if you had been eating a low gluten diet before the original diet it would have suppressed the test numbers. But I agree with plumbago, the proof is in the pudding since your symptoms are disappearing with gluten free eating. The improvement in your symptoms, certain elements of the endoscopy/biopsy pathology report and the antibody blood test numbers all add up to celiac disease in my opinion.

RMJ Mentor
RMJ
Posted

Sounds like celiac disease to me. Symptoms, slightly positive blood test, abnormal biopsy results that indicate celiac disease..  I hope you continue to feel better as you are on the gluten free diet for longer.

I don’t understand why some doctors, even gastroenterologists, seem to be so resistant to diagnosing celiac disease. 

plumbago Experienced
plumbago
Posted

Yes, and when I say go for a second opinion, I mean, just bring your results to him/her. No need to repeat tests.

LeahMc Newbie
LeahMc
Posted
  • Author

Thanks @plumbago, @trents, @RMJ, I appreciate the feedback.

I'll see the internal medicine doc again next week and see what he says.  

 

Scott Adams Grand Master
Scott Adams
Posted

Your first blood test was positive, and not "borderline." Your biopsy results were indicative of early celiac disease, thus also positive. It looks like you indeed may have celiac disease, especially if your symptoms go away on a gluten-free diet. I have no idea why  your doctor is avoiding the proper diagnosis here.

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. 

 

 

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

@LeahMc,

Ask for a DNA test to see if you have any of the known genes for Celiac Disease.  

Those symptoms, the pathology report, and the blood tests say positive to me, too.

Keep us posted on your progress!

  • 1 month later...
LeahMc Newbie
LeahMc
Posted
  • Author

Hi all, thank you for the comments.

The follow up with the internal medicine doctor was good.  He clarified that the gastro report said that "it could be celiac or not", not definitively no.

The internal med doc has said that at this point it's a differential diagnosis and that I should assume it's celiac and run with it.  As long as I feel better, he thinks there's no harm.  

Positive blood test.

Damaged villi.

Blood test negative after 3 months on gluten free diet.

Feeling better on gluten free diet.

Thanks for this resource everyone, I'm learning a lot!

 

 

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

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.):

 

 

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...