Jump to content

  • 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):

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...