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

Is A Biopsy Strictly Necessary?


AudreyT

Recommended Posts

AudreyT Newbie

Hello. My name is Audrey and I am new to the board. I recently suffered a 25 day bout of diarrhea...and my Doc suspects Celiac Disease.

I am scheduling the intital blood test(s). But I wanted to know if a biopsy is really necessary. I am nervous about the procedure, and also just having concerns about finding the time, etc. However, my health comes first, and I want to do the right thing here.

Any thoughts would be appreciated. Thank you.


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



Celiac.com Sponsor (A8-M):



nikki-uk Enthusiast

Getting the biopsy is a very personal thing.

There are many people on these boards that didn't - but they know through dietary response that when they eat gluten they feel ill.... and feel well off it.

There are however benefits to having the biopsy.

It can rule out any other 'nasties' the doc may be looking for.

Both my husband and son were diagnosed by biopsy.

It was our decision because it was irrefutable proof......I knew if there was an element of doubt it would make it harder to stick to being gluten-free for life.

Good Luck :)

Lisa Mentor
Hello. My name is Audrey and I am new to the board. I recently suffered a 25 day bout of diarrhea...and my Doc suspects Celiac Disease.

I am scheduling the intital blood test(s). But I wanted to know if a biopsy is really necessary. I am nervous about the procedure, and also just having concerns about finding the time, etc. However, my health comes first, and I want to do the right thing here.

Any thoughts would be appreciated. Thank you.

Welcome Audrey:

Your blood test can confirm Celiac, but they are not 100% reliable. Make sure that your doctor runs the full Celiac Blood Screening test. If you do have a positive blood test, there is no need for further diagnostic testing for Celiac. The endoscopy exam and biopsy can also confirm Celiac Disease and look for the extent of villi damage in the small intestines. The endoscopy exam can also look for other issues. The biopsy can be hit or miss and also is not 100%. It is not a difficult exam and there is nothing to worry about regarding the procedure.

It is very important, that while you await your blood screening that you remain on gluten. DO NOT GO GLUTEN FREE. It may effect your results.

I hope this was helpful.

happygirl Collaborator

The endoscopy won't only be looking for Celiac. It will be looking to rule/in out other diagnoses, as well.

wannaBAmama Newbie

I had an endoscopy w/ biopsies last month despite negative blood work- I did blood tests one week after a 2 week gluten-free trial and was fearing a false negative. I responded so well to my gluten-free trial in November I really wanted to know if I had villi damage. The results just came back (see my other post re: endoscopy results) but the biopsies determined no villi damage but a high white blood cell count - doctor suspects small intestine bacterial overgrowth (which if left untreated, patients also can see a great response to going gluten free since the bacteria is feeding off of the gluten) - or if it's not bacteria, then very early celiac. I am now on antibiotics (xifaxan) to see if it is a bacteria issue and 3 days in I am feeling really good (I have been gluten-free since 12/22 but the antibiotics made me get more energy in the AM- which was surprising), so it's posible I am not gluten intolerant after all. I will remain off gluten and will also take some probiotics for a month or two before attempting to challenge any gluten but I honestly had not expected this possibility (I thought I was for sure genetically gluten sensitive and was ready to be off of gluten forever). Now I'm just taking things a day at a time. Assuming I will be able to ingest gluten again I'll probably remain gluten-free but not fear accidental glutenations (they suck- I was out of commision for a day and a half after accidentally having a corn tortilla that touched a flour tortilla).

So for me I am glad I did the biopsy. I have been trying to undersatnd my other health issues (infertility) and really wanted to get as much information as possible and the biopsy was part of my quest for answers.

I've had a lot of procedures as part of my infertility and the endoscopy was one of the simplest for me - the worst part was the preparation prior to it (I did a colonoscopy at the same time and was on the liquid diet for a day plus all the laxatives) - I barely remember the procedure itself and had no pain/effects afterwards.

Gina

AudreyT Newbie

Thanks to each of you for your responses.

Is there a type of blood test I should be asking for specifically? Or is there only one that needs to be done?

Lisa Mentor
Thanks to each of you for your responses.

Is there a type of blood test I should be asking for specifically? Or is there only one that needs to be done?

These are some or all of the tests your doctor may order:

IgG Antigliadin

IgA Antigliadin

tTG Antigliadin

IgG Tissue Translutaminase

IgA Tissue Transglutaminase

Total IgA


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



Celiac.com Sponsor (A8-M):



AudreyT Newbie

Thank you so much. Now I can be sure that I am getting the right tests. Thanks again!

happygirl Collaborator

The tests that you want run are: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If you are IgA deficient, they will often run the tTG IgG.

JennyC Enthusiast
These are some or all of the tests your doctor may order:

IgC Antigliadin

IgA Antigliadin

tTG Antigliadin

IgC Tissue Translutaminase

IgA Tissue Transglutaminase

Total IgA

You mean:

IgG Antigliadin

IgA Antigliadin

tTG Antigliadin

IgG Tissue Translutaminase

IgA Tissue Transglutaminase

Total IgA

:)

Lisa Mentor
You mean:

IgG Antigliadin

IgA Antigliadin

tTG Antigliadin

IgG Tissue Translutaminase

IgA Tissue Transglutaminase

Total IgA

:)

Oooops, I'll go back and change it. Thank you ladies.

d4rp Newbie
These are some or all of the tests your doctor may order:

IgG Antigliadin

IgA Antigliadin

tTG Antigliadin

IgG Tissue Translutaminase

IgA Tissue Transglutaminase

Total IgA

`

Hi,

Do you need to be still eating gluten to have these tests show a proper DX?

Lisa Mentor
`

Hi,

Do you need to be still eating gluten to have these tests show a proper DX?

Yes, it's recommended to eat the equivalent of 3-4 slices of bread for at least two months.

grommet Newbie
I had an endoscopy w/ biopsies last month despite negative blood work- I did blood tests one week after a 2 week gluten-free trial and was fearing a false negative. I responded so well to my gluten-free trial in November I really wanted to know if I had villi damage. The results just came back (see my other post re: endoscopy results) but the biopsies determined no villi damage but a high white blood cell count - doctor suspects small intestine bacterial overgrowth (which if left untreated, patients also can see a great response to going gluten free since the bacteria is feeding off of the gluten) - or if it's not bacteria, then very early celiac.

You may want to have a look at this Open Original Shared Link.

It's a link to a write up on SIBO and a few messages from a UK based Coeliac forum.

Best Wishes in you endeavour to find out what is causing your problems.

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    2. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    3. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
×
×
  • 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.