Please Help

[Wi11ow]

Is it possible to get a true positive or negative answer with only 1 biopsy?

 

I called the GI office today to ask exactly what was done during the scope last week. I have the report and I was worried about what I thought the report said. I was out of it and didn't ask any questions at the time.

 

1 - He found damage to my lower esaphagus and took (one) biopsy to test/confirm Barrette's Esophagus.(damage from acid reflux)

 

2 - My stomach was inflamed and he took (one) biopsy to look for abnormal cells. I don't know what that means.

 

3 - And he took ONE biopsy of duodenum (intestines) for Celiac.

 

I read on the University of CA Testing for Medical Research Center website that a minimum of 6 biopsies need to be taken because the damage is patchy and can be missed. I have also read that it cannot be seen by the naked eye.

 

I asked as politely as I could if one biospy would be able to find intestinal damage because it is patchy. She said I don't know where you are getting your information. (I told her) She said, well the doctor has been a GI for 30 yrs, if he saw damage, he would have taken a biopsy. (Can you see it?)

 

I did not talk to doc directly. It's possible this could be mis- information.

 

If I have a negative biopsy that was done with one sample and no blood work, what are the odds that they will actually find damaged villi? 

 

I have not had any blood work done. I did do the Enterolab testing on my own.

 

My results say

Fecal Anti-gliadin IgA    29 Units   (Normal Range is less than 10 units)

Fecal Anti-casein (cow's milk) IgA    29 Units  (Normal Range is less than 10 units)

Fecal Anti-ovalbumin (chicken egg IgA   48 Units  (Normal Range is less than 10 units)

Feacl Anti-soy IgA    64 units    (Normal Range is less than 10 units)

 

HLA-DQB1 Molecular Analysis, Allele 1 0302

HLA-DQB1 Molecular Analysis, Allele 2 0202

Serologic equivalent HLA DQ 3,2 (Subtype 8,2)

 

 

I don't know why but after all I've been through I really feel it necessary to get a diagnosis.

 

Thanks,

L

[Fenrir]

It is possible that the 1 biopsy could be accurate but it's generally not the best procedure to DX celiac.

 

The problem is that celiac damage can be patchy and be in one place and not the next so they should do at least 6 biopsies. In some cases they can see some damage from celiac but most only  show villous damage on microscopic exam.  This is why several biopsies need to be taken, you can see it most of the time while in there with the scope. I go to a GI specialty group and both of the Drs. I saw there that do the procedures say that the vast majority of the time they can't see the damage in celiac disease, they have to wait for the path report and they all do 6-10 samples.

[Wi11ow]

Fenrir - Thank so much for info. That's what I thought. Maybe he did see damage then. Man, I hate waiting!

 

 

 

 

Is being ok one minute then a complete emotional meltdown a symptom?

 

Cuz I don't want to play this game anymore!! LOL

[Fenrir]

Fenrir - Thank so much for info. That's what I thought. Maybe he did see damage then. Man, I hate waiting!

 

 

 

 

Is being ok one minute then a complete emotional meltdown a symptom?

 

Cuz I don't want to play this game anymore!! LOL

 

Even if he saw something, he should have done more than 1 biopsy.

 

Not sure meltdowns are a symptoms but a lot of celiacs have anxiety issues.

[HavaneseMom]

I have heard mixed information regarding whether or not they can see damage too.

My doctor did tell me that he could see the damage as soon as I awoke from sedation after my endoscopy and sent me out the door that day with a celiac diagnosis. I didn't want to believe that I had celiac and asked him how he could tell that I had it visually just from my endoscopy. He showed me a picture of the inside of my small intestine that he had taken and said that the tissue should be smooth and then showed me that mine had a cobbled texture like a brick road. Again not wanting to believe him, I asked how sure he could be from just the visual images and he said 99.9%. My biopsies did come back positive as well.

So, based on my experience, it could be possible that your doctor saw a damaged area and took the one biopsy from there, but it would have been nice if he had taken the recommended 6 for sure.

[Fenrir]

I have heard mixed information regarding whether or not they can see damage too. Some say yes, some say no.

My doctor did tell me that he could see the damage as soon as I awoke from sedation after my endoscopy and sent me out the door that day with a celiac diagnosis. I didn't want to believe that I had celiac and asked him how he could tell that I had it visually just from my endoscopy. He showed me a picture of the inside of my small intestine that he had taken and said that the tissue should be smooth and then showed me that mine had a cobbled texture like a brick road. Again not wanting to believe him, I asked how sure he could be from just the visual images and he said 99.9%. My biopsies did come back positive as well.

So, based on my experience, it could be possible that he saw a damaged area and took the one biopsy from there, but it would have been nice if he had taken the recommended 6 for sure.

According to my GI, sometimes people with Celiac will have nodules. These are not the big nobs that the word brings to mind but more like a bumpy surface on the intestine. They are just big enough that they can sometimes be seen, but not often. He said most people who have celiac disease will have nothing unusual looking when they take the biopsies.

[psawyer]

Sometimes, the damage is severe enough to be visible, but usually it is not. A single positive biopsy would be diagnostic, IMO, but a single negative would be inconclusive.

[HavaneseMom]

According to my GI, sometimes people with Celiac will have nodules. These are not the big nobs that the word brings to mind but more like a bumpy surface on the intestine. They are just big enough that they can sometimes be seen, but not often. He said most people who have celiac disease will have nothing unusual looking when they take the biopsies.

Very interesting! He did use the term "bumpy" and broken up like a cobbled brick road. I wonder if it means anything when they can see this. I could clearly see it in the picture. Maybe this is why I had a bit of a rough first 6 months??

[Fenrir]

Very interesting! He did use the term "bumpy" and broken up like a cobbled brick road. I wonder if it means anything when they can see this. I could clearly see it in the picture. Maybe this is why I had a bit of a rough first 6 months??

Yeah, my GI said that rarely they can see these little bumpy looking nodules (pretty small) but that alone isn't enough to DX celiac, the biopsy has to show it for that.

[Wi11ow]

Hi everyone and thank you for your responses. Sorry to ask for help and disappear. I  had a bad day yesterday.

 

I have 9 pictures of my insides, kind of cool, but none from that area. He did not mention at the time seeing anything. I was just coming out of it, but he said he did a biopsy because of my symptoms. Wait and see I guess. I've decided to to take a break for a couple of days and get out of the house. I have been sitting in front of the computer non stop for days, need to think about something else.

 

I'm going to pack lots of food and drive down to see some waterfalls today!

 

Thank you for you help, I appreciate the information. It has been so much help having somewhere to ask questions, thank you.

[GFinDC]

Hi.

 

Hopefully this link will work.  But if not just search for the Marsh scale and celiac and you can find info on it.  The Marsh scale is how they grade damage to the gut villi.  In advanced damage they can physically see the damage, but in more moderate damage cases they need to take biopsy samples for microscopic review.  You may even find pics of what they call scalloped villi.

 

Open Original Shared Link

 

 

Scalloping is advanced damage and can be seen with the eye.

 

Open Original Shared Link

[Wi11ow]

I got my endoscopy results back as an online report. I have called 3 times to ask questions. The nurse relays them and calls me back. The GI won't talk to me and the only answer is follow up with your primary physician.... He says the test is inconclusive. "non-specific findings on your small bowel biopsy that are of no clinical significance."

He only took ONE biopsy of my intestines. Here is what the pathologist report says. Do you think this is a positive diagnosis???

 

1. Duodenum, second part, biopsy

"Fragments of duodenum mucosa with focal mild villous blunting, focal dilated lacteals in the lamina propria and focal active inflammation."

 

 

Does the blunting of villa say yes I have C and the GI missed it? Or does mild mean no?

 

I have a primary doc appointment tomorrow with results from blood tests. Is there anything I should ask him for a second opinion for biopsy? I got the pathologist report today.

 

Thanks so much for any answers/opinions!

[Fenrir]

Normally, Mild blunting (or atrophy) is conisdered marsh 3a which is positive for celiac disease but the part that confuses me is the report does not mention the condition of the crypts or if there is increased lymphocytes or not. In the presence with increased lymphocytes and  larger crypts, mild blunting generally would be considered positive for celiac disease.

 

I have been workign with pathologist here at work for about 12 years now and every report on EGD biopsies on a patient with possible celiac disease are noted with the condition of crypts, lymphocytes and villi.

 

I would ask for clarification on how the crypts and lymphocytes looked and you may have to go through your primary to get that the way it sounds. I think there is a strong chance your GI and his pathologist are botching your DX.

 

It might be best at this point that you talk with your primary, express your concerns and ask them to check into it. The chances that your primary physician can get the GI doc's  to give you the full report is probably better than if you asked yourself. I can't imagine a pathologist worth his salt that wouldn't comment on lymphocytes and crypts, particularly when they seen blunting to begin with.

[Wi11ow]

Normally, Mild blunting (or atrophy) is conisdered marsh 3a which is positive for celiac disease but the part that confuses me is the report does not mention the condition of the crypts or if there is increased lymphocytes or not. In the presence with increased lymphocytes and  larger crypts, mild blunting generally would be considered positive for celiac disease.

 

I have been workign with pathologist here at work for about 12 years now and every report on EGD biopsies on a patient with possible celiac disease are noted with the condition of crypts, lymphocytes and villi.

 

I would ask for clarification on how the crypts and lymphocytes looked and you may have to go through your primary to get that the way it sounds. I think there is a strong chance your GI and his pathologist are botching your DX.

 

It might be best at this point that you talk with your primary, express your concerns and ask them to check into it. The chances that your primary physician can get the GI doc's  to give you the full report is probably better than if you asked yourself. I can't imagine a pathologist worth his salt that wouldn't comment on lymphocytes and crypts, particularly when they seen blunting to begin with.

 

Thanks so much for the info! And your experience. if you don't mind  I'm going to print this and show my doc ? Maybe he will listen.

 

I read every page again. The words crypts and lymphocytes are not mentioned at all. It is really fairly generic. Just a few sentences about each esop, stomach and duodenum.

 

I told the GI the reason I was seeing him was that Prilosec wasn't working and I suspected Celiac based on symptoms. That's WHY he gave me a prescription. I called Friday to say I wouldn't be able to afford the prescription PPI next month (insurance has changed). Since his report basically said nothing was wrong could I stop taking it? I felt better eating gluten free. I talked to his nurse... Doc said you have to keep taking it because of inflammation and damage so you can heal. Umm... so there *is* something wrong!?! If you can't afford it, you can take Prilosec 2x per day. I quit asking questions! I think he botched it too..... **rant off

 

 

 

Thanks again.

[Wi11ow]

I have Celiac!
The blood tests were boarder line but positive, and my doc got some more info on the biopsy. With the mild blunting, he says he agrees it is C. I am his first patient! I think for now I will stay with him. He said he was willing to run any blood tests I want... didn't know if insurance would pay... It's been a roller coaster for the last month.

 

Some vitamin & iron a little low.

B vitamin low in the "high risk" range

vitamin D3 low in the "high risk" range

iron low

ferritin more low

Omega 3 low

Inflammation 2 years ago right after surgery was 9.2 (range high risk >2.9) - This time it is 12!!

 

I don't have my celiac numbers - they came after my appointment. He told me they were not real high, but positive, above the normal range. And my doc got more info from the lab - there were 4 biopsies taken and they show mild villi blunting. He agrees that something got lost in the translation!!

 

I still find this daunting when I think about going to Chicago to see family for a week. Have no idea how to do that safely.... But I am so thankful to finally know what is wrong and be able to do something about it! I won't worry about tomorrow's problem!! One day at a time.

 

Almost 3 weeks gluten free and feeling pretty good most days!!

[Wi11ow]

Fenrir

Thank you so much for the information! I think that what you had to say is what convinced my doc to go back to the lab and get more information. I kept names, etc out of it, but he was interested. I am his first diagnosis, but he seems willing to do some research!

Thanks again

[1desperateladysaved]

So glad you have a doctor that listens and got to the diagnosis!

 

Dee