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Positive biopsy but blood work negative

hanbanan

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hanbanan Newbie
hanbanan
Posted

Hi Everyone,

This is my first post and I'm hoping someone can give me advice. I had a colonoscopy and egd done for multiple gastrointestinal symptoms I was  having and it came back indicating mild or beginning stages of celiac. I do not have a copy of the biopsy results but it said results indicated mild or beginning stages of celiac or other processes?? (something like that but I can't remember exactly what the nurse said). Anyway, they requested I get bloodwork done and the results are below:

 
 
 
Celiac Panel
 
Gliadin IgA
5 unit
Gliadin IgG
4 unit
Reticulin IgA
Negative
Reticulin IgA Add'l
not indicated.
Reticulin IgG
Negative
Reticulin IgG Add'l
Not Indicated
TTG IgA
1
 
 
These results are obviously negative but higher than my 2009 results when I was tested. Here are my 2009 results:
Gliadin IgA
<3 u/ml
Gliadin IgG
<3 u/ml
Reticulin IgA
<1:10
Reticulin IgG
<1:10
TTG IgA
<3 u/ml
 
What do you make of this? Should I be pursuing another diagnosis or asking for any more specific blood work to get a celiac dx? The biopsy indicated celiac but the bloodwork says otherwise. Thanks!
 
 
 
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cyclinglady Grand Master
cyclinglady
Posted

Lab ranges would be helpful as they vary from lab to lab.  The rediculin tests are not recommended anymore for celiac disease.  Read here:

Open Original Shared Link

These are the current tests:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)
 
I would strongly recommend obtaining copies of all your lab results!  

 

Welcome to the forum and let us know how it goes! 

 

 

 

Mandy F. Apprentice
Mandy F.
Posted

Hi! I haven't been to these forums in a long, long time since Celaic has been low on my list of priorities but I popped in for some help and saw your question...

I am by no means an expert. I haven't kept up on which tests are best and whatnot. What I can tell you, though, is that 9 years ago I had the "Celiac Panel" run 2 weeks before my scope w/biopsies and it came back negative. In the 6 months that I refused to admit I had Celiac and go on the diet, a different doctor ran it again - negative. Another 5-6 months later, after I had committed to the diet, yet another doctor ran it again - negative... It was run annually for a couple of years thereafter by my endocrinologist, though he never said why. I assumed it was to check for any hidden glutening (or cheating)...

With all that said, my biopsies were positive and, despite my 6 months of denial in the beginning, there is no doubt that I do have Celiac disease. Since committing to being gluten free, and my gut healing, I now react when I ingest gluten. I started off being able to cheat with fairly mild symptoms for the first several months. Now, there is nothing in the world that could tempt me to bring on that misery intentionally... ugh!

I agree with Cyclinglady, you definitely want to get copies of all of your lab work, your endoscopy notes, etc. to verify that they do say "early celiac" or something similar before you make any decisions to pursue other diagnoses or accept this one. However, given your intestinal symptoms and biopsy results, I think the easiest thing for you to do is probably just to go gluten free for a few weeks and see if it helps. If you stick with it for several weeks then eat something full of gluten, you'll probably have your answer. Having the verified test results would make it easier to prove your diagnosis should the need ever arise, but that's pretty rare...

Good luck sorting all of this out! I know it's a lot to take in at the beginning!

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Mandy F. said:

Hi! I haven't been to these forums in a long, long time since Celaic has been low on my list of priorities but I popped in for some help and saw your question...

I am by no means an expert. I haven't kept up on which tests are best and whatnot. What I can tell you, though, is that 9 years ago I had the "Celiac Panel" run 2 weeks before my scope w/biopsies and it came back negative. In the 6 months that I refused to admit I had Celiac and go on the diet, a different doctor ran it again - negative. Another 5-6 months later, after I had committed to the diet, yet another doctor ran it again - negative... It was run annually for a couple of years thereafter by my endocrinologist, though he never said why. I assumed it was to check for any hidden glutening (or cheating)...

With all that said, my biopsies were positive and, despite my 6 months of denial in the beginning, there is no doubt that I do have Celiac disease. Since committing to being gluten free, and my gut healing, I now react when I ingest gluten. I started off being able to cheat with fairly mild symptoms for the first several months. Now, there is nothing in the world that could tempt me to bring on that misery intentionally... ugh!

I agree with Cyclinglady, you definitely want to get copies of all of your lab work, your endoscopy notes, etc. to verify that they do say "early celiac" or something similar before you make any decisions to pursue other diagnoses or accept this one. However, given your intestinal symptoms and biopsy results, I think the easiest thing for you to do is probably just to go gluten free for a few weeks and see if it helps. If you stick with it for several weeks then eat something full of gluten, you'll probably have your answer. Having the verified test results would make it easier to prove your diagnosis should the need ever arise, but that's pretty rare...

Good luck sorting all of this out! I know it's a lot to take in at the beginning!

Great advice!  ?

hanbanan Newbie
hanbanan
Posted
  • Author

Thank you both for your responses! Yes this is a frustrating experience for sure. I thought that the panel they did seemed a little outdated. A total IGA was never even done so I went back to have this done and am waiting on the results. The biopsy definitely read celiac. The nurse read me the results over the phone word for word and it read something like "mild or beginning stages of celiac disease" but then said something about "other processes" so not sure what that means. All the other things that mimic celiac seem really scary! I had really hoped the blood work would verify the the biopsy results because I have 3 kids and one of them has GI issues and I know celiac is hereditary. I'm not sure if this blood work comes back negative whether or not the doctor will want to pursue other possible diagnoses for the reason the biopsy looked the way it did or not. The process is stressful so thank you for your feedback!

squirmingitch Veteran
squirmingitch
Posted

Here's a link to the Newbie 101. It will help teach you how to keep yourself safe. Follow all the links contained in the thread.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

squirmingitch Veteran
squirmingitch
Posted

OOPS! I posted the above to the wrong thread. Sorry. It's still useful info. though so I will leave it where it is.

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