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

Positive biopsy but blood work negative

hanbanan

Recommended Posts

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Coping with Celiac Disease
      8

      Draft gluten-free ciders… can they be trusted ?

      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos. I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, ...
    2. Wends
      - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    3. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to...
    4. Gigi2025
      - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      64

      How Come Gluten Didnt Bother Me In Italy

      Hi Christiana, Many thanks for your response. Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless). I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his...
    5. Wends
      - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed?...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,711
    • Most Online (within 30 mins)
      7,748
    new journey
    Newest Member
    new journey
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
    • Wends
      Inconclusive results

      By Wends · Posted

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
×
×
  • 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.