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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.