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

I am frustrated with testing: positive blood negative stomach scope

GreenRider

Recommended Posts

GreenRider Newbie
GreenRider
Posted

As reference here is my first post from October: 

 Where I was struggling to determine whether I had celiac. I have a blood tests reading: Tissue Transglutaminase Ab IgA is 143.7 and serum protein IgA 2.77. 

As an aside, I work in a science based industry that makes me feel strongly that either you have celiac or not. I don't want to be gluten-free without some definitive results. 

Today I finally had an endoscopy, which on the results it says: "normal. no apparent celiac disease." The doctor came out to see me after the test and said the same thing. He mentioned that they took 2-3 biopsies, so we will have to see what those say, but he said the stomach looked very regular. I have been eating gluten 1-2 meals a day for the last 1.5 months. I have been having some possibly related stomach symptoms in the last few weeks: very lose stool, indigestion, bloating and occasional constipation.

I called to book a follow up as suggested by the doctor and cannot get in until August 20. I'm so frustrated!!! He said as he left that I could go ahead and do a gluten free diet is I want....but like what the heck? These results are so inconclusive to me. 

Any thoughts or feedback is MUCH appreciated. How can my stomach look so normal and yet my numbers are SO high? I'm very frustrated with this and especially the inability to see him until end of August.  

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I think you need to wait for the pathologist’s report.  My GI used an older scope, so he visually could not see any damage.  My biopsies revealed a Marsh Stage IIIB.  

In the meantime, go gluten free as he suggested.    The small intestine is vast.  He did not take a lot of biopsies.  Damaged areas can be missed.  

GreenRider Newbie
GreenRider
Posted
  • Author

Thanks for the feedback, this is really helpful. I was very surprised and a little shocked at the answer of "we didn't see any celiac." We had even discussed the need to do lots of biopsies at my first appointment together - hoping he didn't decide to do fewer just because he saw no apparent celiac. 

 

Thanks again! 

cyclinglady Grand Master
cyclinglady
Posted

And...my follow-up endoscopy after being gluten-free for five years revealed healthy villi.  My new GI had the latest and greatest scope.  I even got pictures!  The pathologist’s report confirmed the endoscopy results.  

RMJ Mentor
RMJ
Posted

If the biopsy is negative or inconclusive you could see if your antibody levels go down on a gluten free diet.  That would be an indication that your body attacks itself when you eat gluten.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,101
    • Most Online (within 30 mins)
      7,748
    Danielle Krucker
    Newest Member
    Danielle Krucker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Being a burden to family/friends

      By trents · Posted

      Matthew 18:21-35
    • CatS
      Being a burden to family/friends

      By CatS · Posted

      I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten Free but contain Oats, and apparently this is becoming more common. I almost bought some gluten free flour but read that it contained oats. A certain percentage of Celiacs have this complication. I can’t help feeling offended and excluded when others act like I am being “high maintenance”. I am becoming better at being an advocate for myself.  I have had diverticulitis 3 times and each time hospitalized-once, the attending nurse didn’t know what celiac means-she had to research...  If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore. Be very careful about cross-contamination. I was sick recently for 10 days after a meal was contaminated while I was on holiday. If servers say they have gluten free buns or bread, ask if they use a toaster specifically reserved for gluten-free, or don’t chance it. On a positive note, I didn’t find out I had Celiac Disease until I was 60. Eating a gluten free diet means no more terrible headaches, hives, rashes, intestinal bloating and irregularity, Gastro Intestinal Reflux….when I follow a strict diet and mostly always eat at home, I feel great! I also weeded out “friends” who weren’t worth being around.
    • Kwinkle
      Update on Gaviscon

      By Kwinkle · Posted

      Thank you, Trents- are there any safe alternatives?
    • Scott Adams
      Delayed reaction

      By Scott Adams · Posted

      I agree with @trents, it's not typical for gluten exposure to cause symptoms as delayed as a week or two after ingestion. In most cases, reactions to gluten occur within hours to a few days, depending on individual sensitivity and how much gluten was consumed. The delayed symptoms you describe—stomach cramping in the mornings and flaky stool—might suggest that something else is contributing to your discomfort. Cross-contamination is a common challenge, especially when dining out, and it's great that you're doing your best to stay gluten-free. However, the inconsistency of your symptoms and the long delay between exposure and reaction could warrant further investigation. It's possible that another gastrointestinal condition, such as IBS, a food intolerance, or a reaction to something else in your diet, might be contributing to your symptoms. You might consider keeping a detailed food and symptom diary to identify potential patterns or triggers. Additionally, consulting your gastroenterologist could provide clarity. They may suggest testing to rule out other issues, such as small intestinal bacterial overgrowth (SIBO), microscopic colitis, or other sensitivities. If you suspect cross-contamination is a significant issue, you could also ask for follow-up bloodwork (e.g., tTG-IgA) to check if your antibodies are elevated, which might indicate ongoing gluten exposure.
    • Scott Adams
      Polly-O all cheese products are gluten free?

      By Scott Adams · Posted

      Good to know, here is their website: https://polly-o.com/
×
×
  • Create New...