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

Anyone Diagnosed With Biopsy And Had Negative Blood Work?


Chelle15

Recommended Posts

Chelle15 Apprentice

I was tested by a blood panel and it came back with 2 positive markers, however my new GI doctor said that based on the two markers that came back positive he does not think I have it. He still wants me to get a biopsy, but he is doubtful. So I am wondering if there is still a chance I could come back with a positive biopsy. It is not that I wanted to have a disease, but I thought I finally had an answer to my problems. Just curious if anyone had a similar experience. I posted a similar post in pre-diagnosis, sorry if anyone had to read my whining twice. I am just trying to get as many answers and info as possible. THANK YOU!!!!


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

What were the two positive markers exactly? It sounds to me like he dismisses positive bloodwork as not meaning anything, when he might be totally wrong.

Chelle15 Apprentice

Okay, I am going to type exactly what it says, because I am not sure what I need to put down:

IGA: 144

Endmysial IgA Abs: <1:10

Gliadin IgG Abs: 49(H)

Gliadin IgA Abs: 23(H)

Transglutaminas IgA: 4

THANK YOU!

penguin Community Regular

What are the reference ranges?

Chelle15 Apprentice

Sorry...here is everything. Thank you for your time.

Component Reference

IgA -- 78-391 mg/dL --144

Endomysial IgA Abs --<1:10

Gliadin IgG Abs-- --Low: < 20 Units --49(H)

Gliadin IgA Abs --Low: < 20 Units --23(H)

Transglutaminas IgA --Low: < 20 Units --4

Nancym Enthusiast

Yes! I talk to someone on another message forum who had a positive biopsy with negative blood work. She had completely flattened villi. Dr. Fine's work has also found people with negative blood and positive biopsy. That's why he thinks testing stool is so much better than blood.

mle-ii Explorer

I don't get it, from the looks of the numbers it looks like you are positive for Celiac if you only go with the bloodwork. What am I missing that the Dr isn't?


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



Celiac.com Sponsor (A8-M):



penguin Community Regular
I don't get it, from the looks of the numbers it looks like you are positive for Celiac if you only go with the bloodwork. What am I missing that the Dr isn't?

The less specific blood markers are the positive ones, although they are the more sensitive tests. If the TtG is normal, a lot of dr's just write off celiac.

luvs2eat Collaborator

My daughter had inconclusive blood work and a positive endoscopic biopsy.

nikki-uk Enthusiast

My husband had negative bloodwork (tTg also) but a positive biopsy.

Guest Lisa Monet
Sorry...here is everything. Thank you for your time.

Component Reference

IgA -- 78-391 mg/dL --144

Endomysial IgA Abs --<1:10

Gliadin IgG Abs-- --Low: < 20 Units --49(H)

Gliadin IgA Abs --Low: < 20 Units --23(H)

Transglutaminas IgA --Low: < 20 Units --4

My bloodwork was inconclusive, but I had flattened villi. It looks to me like you are IgA deficient, as am I. From what I've read, an IgA deficiency can distort your blood work results. Dr. Fine diagnosed my celiac disease.

Lisa

mle-ii Explorer
My bloodwork was inconclusive, but I had flattened villi. It looks to me like you are IgA deficient, as am I. From what I've read, an IgA deficiency can distort your blood work results. Dr. Fine diagnosed my celiac disease.

Lisa

How can you tell that they are IgA deficient? I thought that the first test listed said that they were within the range or am I again misinterpreting. Must be the brain fog. ;)

Chelle15 Apprentice

Thank you for all of your responses. It is just so confusing. So if they find out I don't have it does that mean something else is wrong? Or it just gets dropped?

I just want an answer so I can stop feeling so crappy. And I am so used to them telling me nothing is wrong that I clung on tight to the fact that I may have found out what was wrong. So when the GI told me he didn't think I had it I was so disappointed.

Thank you for all of your support.

Just wanted to add, I will be trying a gluten free diet no matter what the results are.

floridanative Community Regular
The less specific blood markers are the positive ones, although they are the more sensitive tests. If the TtG is normal, a lot of dr's just write off celiac.

What about when only your tTg is high (indicating Celiac) and they still write it off as not Celiac. That's what happened to me. Two different docs read my panel and both thought I did not have it. Of couse the biopsy proved them both wrong. My biopsy was done by one of the doubting docs. - boy was his face read when my results came back. :lol::lol::lol:

Chelle15 Apprentice

Which one(s) is/are the tTg?

Aerin328 Apprentice

Just wanted to note that I only had an elevated gliadin IgG antibody (score 57, range max 20) and though I had two doctors tell me it meant nothing, I one that that said, "It is almost definite that you have celiac's disease." That final doctor diagnosed me on the spot w/out a biopsy (which is quite rare). Regardless, I have gone to Enterolab (www.enterolab.com) in hopes of getting a more specific/ conclusive answer, I hear they are great! But just wanted to let you know that your bloodwork certainly does look potentially positive. Also, I've heard that the anti-gliadin antibody IS 100% a sign of reaction to gluten; it just doesn't necessarily mean Celiac disease (which means flattening/damaging of your poor villi).

Guest Lisa Monet
How can you tell that they are IgA deficient? I thought that the first test listed said that they were within the range or am I again misinterpreting. Must be the brain fog. ;)

Actually, it must be my brain fog! I just looked at the bottom number for some reason! :blink:

Archived

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

  • 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 replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    2. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    3. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    4. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    5. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
×
×
  • 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.