Endocoscopy Findings - Question

[spirit22]

I have just returned home from having an endoscopy & colonoscopy. Last month, I tested positive on the IGA bloodwork but negative on the total count. My doc said there was a bit of confusion surrounding my blood results, so he would take a biopsy today during the endoscopy.

 

Upon coming out of recovery, the notes the nurse read to me said that the colonoscopy was normal & the upper endoscopy was normal "other than mild irritation in the stomach. Biopsies are taken". I don't know how many biopsies he took, nor do I know if he actually took any from the intestinal area. I was, however, able to see the photos of the stomach irritation that he viewed.

 

My question is this: is it possible that celiac (or gluten sensitivity) might cause stomach irritation or does it only show up in the intestinal area?

 

I am making an appointment to see my doctor to hear the results of this stomach issue but would really like to hear from others here.

 

Thank you for any advice/experience that you have to share!

[nvsmom]

Celiac is an attack on the small intestines.  The stomach could be affected, but so can the brain, gall bladder, joints or other body parts or systems.... Maybe he meant the stomach and was dumbing it down (severely)?

 

Celiacs do not usually have visible intestinal damage, usually a biopsy is needed to see the damage.

 

I'm sure others who know more will chime in.

[Fenrir]

I didn't have any visible damage in my intestines either but the biopsies showed Marsh grade 3b which I think is about the second highest on the scale you can get, so there was actually a lot of damage. 

[spirit22]

Thanks for your replies. I will get the biopsy results next week. The gal in the office said that in the biopsies for stomach irritation, they are usually looking for H. Pylori and if it turns out that I have it, they will prescribe antibiotics.  

 

As for the intestinal biopsies, I have no clue whether he took one or several but I'm hoping he took several.

[Wi11ow]

I had an endoscopy last week, awaiting results. I was told he took one biopsy in esophagus, one in stomach because it was inflamed. And one in intestines. I don't know why he didn't take more. I don't yet know what is causing the stomach inflamation. I am also waiting for blood tests to come back. I'm interested in your results.

[spirit22]

I had an endoscopy last week, awaiting results. I was told he took one biopsy in esophagus, one in stomach because it was inflamed. And one in intestines. I don't know why he didn't take more. I don't yet know what is causing the stomach inflamation. I am also waiting for blood tests to come back. I'm interested in your results.

Wishing you well on the outcome of your results. I will update when I get mine back. Please do the same with yours. I'm interested in hearing about your stomach inflammation. My doc didn't call it 'inflammation' but rather "irritation". Will be interesting to compare notes.

 

Have a great weekend!

[greenbeanie]

I had inflammation of my stomach and esophagus that was visible during the endoscopy, and they took biopsies. The H. Pylori test (from stomach biopsies) was negative, and my intestinal biopsies were negative for celiac. However, they only took 4 samples, and none from the duodenal bulb. My daughter has biopsy-confirmed celiac that would have been missed if they'd tested her the way they tested me - she had 12 intestinal biopsies, and the ones from the duodenal bulb had damage to villi, whereas a number of the other samples from father down the intestines did not.

Anyhow, I was told that my stomach inflammation was gastritis, and that I had esophagitis too (and a hiatal hernia), but since the H. Pylori test was negative they had no treatment recommendations for that. I still do not have any clear diagnosis, but I'm happy to say that almost all of the gastritis and esophagitis symptoms - as well as decades of diarrhea and many other symptoms - were hugely improved within weeks of going gluten free. I hope you get some clear answers from your biopsies, but if things are still muddled it's certainly worth a good long try anyhow!

[spirit22]

I had an endoscopy last week, awaiting results. I was told he took one biopsy in esophagus, one in stomach because it was inflamed. And one in intestines. I don't know why he didn't take more. I don't yet know what is causing the stomach inflamation. I am also waiting for blood tests to come back. I'm interested in your results.

My thoughts are with you Wi11ow. Please remember to update here when you get your results. 

 

A nurse called today to check on me after the procedures from yesterday. I was able to ascertain from her that my doctor took 4-6 biopsies from my intestines and a few in my stomach area. It makes me feel a bit better knowing that he took more than one in the intestinal area. Waiting for the results is hard though. In the meantime, I'm staying away from gluten.

[spirit22]

I had inflammation of my stomach and esophagus that was visible during the endoscopy, and they took biopsies. The H. Pylori test (from stomach biopsies) was negative, and my intestinal biopsies were negative for celiac. However, they only took 4 samples, and none from the duodenal bulb. My daughter has biopsy-confirmed celiac that would have been missed if they'd tested her the way they tested me - she had 12 intestinal biopsies, and the ones from the duodenal bulb had damage to villi, whereas a number of the other samples from father down the intestines did not.

Anyhow, I was told that my stomach inflammation was gastritis, and that I had esophagitis too (and a hiatal hernia), but since the H. Pylori test was negative they had no treatment recommendations for that. I still do not have any clear diagnosis, but I'm happy to say that almost all of the gastritis and esophagitis symptoms - as well as decades of diarrhea and many other symptoms - were hugely improved within weeks of going gluten free. I hope you get some clear answers from your biopsies, but if things are still muddled it's certainly worth a good long try anyhow!

Hi greenbeanie ~

 

I saw a photo of my duodenal bulb. Underneath the photo, it said "normal". I don't know whether he took a biopsy from that area or not but it would good to know. I've made an appointment to talk to him but I can't get in until August 13th! In the meantime, I've found out that he took 4-6 biopsies checking for celiac and a couple from my stomach area because of the "irritation". I'm really hoping that something conclusive will come from the celiac biopsies and there won't be anymore guessing. Anyway, I will re-post when I get my results. Thanks so much for your post! I'm really glad to hear you are doing so much better gluten-free!

[luvrdeo]

I had an endo/colonoscopy last week too - my doctor made the mistake of telling me that what he saw on the endo didn't look good at all, that being gluten-free hasn't helped whatsoever.  Biopsies came back and everything (except for my colitis) checked out okay.  I was somewhat confused by all of this, but I guess it's good news!

[spirit22]

I had an endo/colonoscopy last week too - my doctor made the mistake of telling me that what he saw on the endo didn't look good at all, that being gluten-free hasn't helped whatsoever.  Biopsies came back and everything (except for my colitis) checked out okay.  I was somewhat confused by all of this, but I guess it's good news!

Yes, it sounds like a pretty good report. Congrats! How long have you been gluten-free?

[luvrdeo]

Yes, it sounds like a pretty good report. Congrats! How long have you been gluten-free?

2 years, but everything still runs through me like water, my symptoms have actually gotten worse.  So yes...good news, but still no relief! 

[spirit22]

luvrdo ~

 

I'm so sorry you're still having the bowel problems. Are there any other tests you can try?

[spirit22]

I didn't have any visible damage in my intestines either but the biopsies showed Marsh grade 3b which I think is about the second highest on the scale you can get, so there was actually a lot of damage. 

Fenrir ~

 

What is Marsh grade 3b?

[Fenrir]

Fenrir ~

 

What is Marsh grade 3b?

The Marsh grading system just indicates the amount of damage.

 

1: This is simply increased lymphocytes in the tissue,not specific for celiac but people on a long term gluten-free diet may have increased lymphocytes.

 

2:  Has increased lymphs but also, larger than normal villious crypts (the valley/space between villi). Again, not always specific of celiac.

 

3a: all the same as grade 2 but also has blunting or flattening of the villi (atrophy)

 

3b: same as 3a but more damage/atrophy of the villi. Subtotal or near complete atrophy.

 

3c: Complete villious atrophy.

 

 

Essentiall the higher up the scale you go the worse the damage, but strangely it doesn't always mean the person is having progressively worse symptoms. My Celiac specialist says that sometimes they get people with 3c damage and very few symptoms.

[spirit22]

The Marsh grading system just indicates the amount of damage.

 

1: This is simply increased lymphocytes in the tissue,not specific for celiac but people on a long term gluten-free diet may have increased lymphocytes.

 

2:  Has increased lymphs but also, larger than normal villious crypts (the valley/space between villi). Again, not always specific of celiac.

 

3a: all the same as grade 2 but also has blunting or flattening of the villi (atrophy)

 

3b: same as 3a but more damage/atrophy of the villi. Subtotal or near complete atrophy.

 

3c: Complete villious atrophy.

 

 

Essentiall the higher up the scale you go the worse the damage, but strangely it doesn't always mean the person is having progressively worse symptoms. My Celiac specialist says that sometimes they get people with 3c damage and very few symptoms.

[spirit22]

Fenrir ~

Thank you for the explanation. I'm glad you were able to get a diagnosis and I hope you're feeling better. I'm still trying to get a definitive answer about celiac.

[spirit22]

UPDATE:

I had the endoscopy & colonoscopy last Thursday (5/8/14). My biopsies came back yesterday (5/12/14) with readings of negative for celiac and negative for H. Pylori bacteria.

I've put a call into my doc's office asking to re-take the Celiac Panel b/c my tTG IGA was positive several weeks ago.

Is it fairly common for a tTG IGA to show up as a false-positive?

[Fenrir]

No, it is not very common that a tTG IgA would be false positive, about 5% of the cases are false positive I think.

 

It is probably more likely to have a false negative biopsy than to have a false positive tTG IgA. 

[Gemini]

UPDATE:

I had the endoscopy & colonoscopy last Thursday (5/8/14). My biopsies came back yesterday (5/12/14) with readings of negative for celiac and negative for H. Pylori bacteria.

I've put a call into my doc's office asking to re-take the Celiac Panel b/c my tTG IGA was positive several weeks ago.

Is it fairly common for a tTG IGA to show up as a false-positive?

This is where confusion and a botched diagnosis can happen when people rely on the "Gold Standard".  It is common to have positive blood work and a negative biopsy in people who have not accrued enough damage in their small intestine or the doctor did not hit the right spot and missed damage that could be present.  Was there any other test on the Celiac panel that was positive besides the tTg?  At this point, I would go strictly gluten free for at least 6 months to see if you feel better.  There is also gene testing to see if you carry any Celiac genes, to help figure this all out.  But if you are symptomatic, the best way to tell if testing is inconclusive is to do the dietary trial.

 

Good luck!

[Wi11ow]

spirit22 sorry you have confusion with your results. I hope you get some answers!

 

Still waiting for my results...are you still eating gluten for the blood tests?

[spirit22]

UPDATE:

I received the results from my colonoscopy & endoscopy from last week. Everything is normal. Celiac biopsies came back as "normal". H. Pylori came back as "negative". The doc's office (at my request) is mailing me an Rx to repeat the Celiac Panel. I've requested it be done again as I came in positive on the tTG IGA.

The doc's P.A. did not give me a diagnosis. She only said that I "might have a gluten sensitivity" and that "the biopsy is the final word" on celiac disease, and so I do not have it. With celiac being so dangerous of a disease, I am not ready to throw in the towel yet & walk away under the impressing that I only have "a gluten sensitivity". Not with that tTG IGA test having come in earlier as positive.

Has anyone tried the stool test? How about the saliva test? Accurate?

[spirit22]

No, it is not very common that a tTG IgA would be false positive, about 5% of the cases are false positive I think.

 

It is probably more likely to have a false negative biopsy than to have a false positive tTG IgA.

Thanks again, Fenrir, for your reply. From what I've read here & other places, it does seem it's not too likely to receive a false-positive. That's why I am not ready to accept the P.A.'s answer about the biopsy. I don't want to have celiac but at the same time, I want to know conclusively whether I have it or not (if at all possible).