Me Too, Me Too! Endoscopy Report- Need Help With Results, Please.

[nosy parker]

So I was finally able to obtain both my endoscopy report issued by my doctor after the procedure and the pathology report.  It doesn't seem very detailed and I'm a bit surprised by what's written.

 

Endo report (with photos)

 

Findings:  Normal esophagus.  Normal stomach (#2).   Rather clear scalloping of D1/D2 both biopsied aggressively to r/o celiac which is very possible here (#1).

 

 

Final Pathology report

 

1.  Duodenum (endoscopic biopsy):

       -  small intestinal mucosa with no significant pathology

2.  Stomach (endoscopic biopsy):

      - gastric antral and oxyntic mucosae with no significant pathology

 

 

That's it for the pathology report.  What the heck is that?  My doc took 11 samples of of D1 and 5 of D2.  Doesn't seem very detailed. Obviously my GI thought that Celiac was a good possibility.  What does "no significant pathology" mean? 

 

Uuughh!  Does the scalloping in both areas of the duodenum (he wrote duodenal bulb & duodenum 2nd part) mean anything?  Could it be caused by something else? 

 

What do you think?  Any help would be sooooo appreciated!

[Gemini]

Scalloping is usually the first thing to happen before the villi go.  That, and inflammation can happen also.  A doctor will not diagnose Celiac Disease unless they see flattened villi...and lots of it.  So, this could be early signs of Celiac.  Did you have blood work done?  Are you symptomatic for Celiac?  If so, then I would go gluten free.  Otherwise, you'll have to wait until there is  much more damage for them to find and that's not a good way to go.

 

Another thing for them to check is the level of IEL's....Intraepithelial lymphocytes.  These are found in the mucosal lining of the GI tract and will elevate in the presence of inflammation....very common in Celiac Disease.  No mention of this in the biopsy report and that would have been good to know.

[nosy parker]

Thank you Gemini.  I only had the initial blood work done (ttg-iga), but discovered then that I was IgA deficient so the test was useless.  My GI did the endo because I also have low ferritin and many other symptoms so he figured we'd just go in and look.  I haven't had any other blood work done.  I doubt they will do any now that the results are negative from the endo.

 

How long from this scalloping does villi damage occur?  Is this a significant finding?  Is it known to be a pre-cursor to celiac?  Because none of the docs have said anything about it.

 

I am doubting if the pathologist even knew what to look for, since his report is sooooo basic and lacks any detail.  I would really like a second opinion on that.  I have no idea how to go about getting that done.  I'm wondering if I should see a new GI and get another endo done.  Although I believe that my current GI has been excellent and done everything he can.  I'm doubting the pathologist's "expertise" in this diagnosis.

 

I know going gluten free is the answer, but I really want the official diagnosis so that I can be armed for my children.  I suspect they may also have these issues.

 

I'm also wondering if scalloping of folds is considered "normal"?  Wouldn't that necessitate an answer as to why they are scalloped?  Is this considered irritation or damage?  Why would this not even have been mentioned to me?  I only know this stuff because I got a copy of these reports yesterday.  Does IBS cause this too?

 

I am so tired of this never-ending story.

[Gemini]

I had a nice answer to your questions all typed up and then the internet crashed and I lost it.        I will respond later...I promise!

[Gemini]

OK....let's try this again.

 

Scalloping is not normal and usually is seen with Celiac when damage is starting to ramp up.  Many people have reported scalloping on their biopsy reports.

Your small intestine, believe it or not, has the surface area of a tennis court, if laid out flat.  It has many peaks and valleys, which are the villi, and these create all this area for absorption of food. It really is a brilliant design.  Now you have all this inflammation so the villi start to blunt and I think this may affect surface tension and creat this scalloping affect that is seen.  That's just my theory but whatever the exact reasons involved, your duodenum starts to change shape.  Why doctors never seem to think this is an issue is beyond me.  As they are trained to only look for flattened villi, everything else gets shoved under the rug. 

 

You have had the biopsy and ruled out more serious conditions and problems.  You have low ferritin and other symptoms so have nothing to lose by doing a gluten-free trial.  If your issues resolve, I would press hard for a diagnosis based on that and maybe even ask for gene testing to see if you at least carry one of the genes for Celiac. 

 

The IBS thing......IBS is not a diagnosis.  It just means you have an irritated bowel.  Like you need to be told that!  They symptom treat and you never get real results.  Something is irritating your bowel so you need to find out what food is causing the grief.  It could very well be gluten, from what you described. Don't settle for the old IBS blow off.  They all do that and it's the biggest reason people aren't diagnosed.  You have good reason to believe you have a gluten problem so try the diet and see what happens.  It's difficult to accept that you may never get a definitive diagnosis but don't wait for your gut to be trashed so they can find it on a biopsy. If you really want to, go for a second opinion.....it could not hurt.  Try to find a doctor that specializes in Celiac, if you can.  But the diet may give you more answers.

 

I wish you luck!   

[kareng]

They didn't give you the whole pathology report. A path report has to have things on it like the number & sizes of the biopsied pieces. It will say how the pieces are presented. You got only the final diagnosis that a pathologist was willing to put down. I would insist on the whole report. If that is the whole procedure report, it is lacking also. If your insurance company was given those 5 sentence fragments as proof and justification for the procedure, they would not pay from my experience.

[nosy parker]

They didn't give you the whole pathology report. A path report has to have things on it like the number & sizes of the biopsied pieces. It will say how the pieces are presented. You got only the final diagnosis that a pathologist was willing to put down. I would insist on the whole report. If that is the whole procedure report, it is lacking also. If your insurance company was given those 5 sentence fragments as proof and justification for the procedure, they would not pay from my experience.

 

I'm in Canada so insurance isn't involved.  The paper I have says "Final pathology report".  I have no idea if there are other reports prior to that.  This one does indicate the number of biopsies (11 of one section and 5 of the other) and the size range, and also what they were sent in.  But nothing other than that.  What do you mean "how they are presented"?  Do you think there is some other report that is more detailed?  Because my doctor doesn't have that. 

 

Do you think I'm allowed to request that?  Would another doctor or pathologist be able to review that and come to a different conclusion?

 

Thanks!

[nosy parker]

OK....let's try this again.

 

Scalloping is not normal and usually is seen with Celiac when damage is starting to ramp up.  Many people have reported scalloping on their biopsy reports.

Your small intestine, believe it or not, has the surface area of a tennis court, if laid out flat.  It has many peaks and valleys, which are the villi, and these create all this area for absorption of food. It really is a brilliant design.  Now you have all this inflammation so the villi start to blunt and I think this may affect surface tension and creat this scalloping affect that is seen.  That's just my theory but whatever the exact reasons involved, your duodenum starts to change shape.  Why doctors never seem to think this is an issue is beyond me.  As they are trained to only look for flattened villi, everything else gets shoved under the rug. 

 

You have had the biopsy and ruled out more serious conditions and problems.  You have low ferritin and other symptoms so have nothing to lose by doing a gluten-free trial.  If your issues resolve, I would press hard for a diagnosis based on that and maybe even ask for gene testing to see if you at least carry one of the genes for Celiac. 

 

The IBS thing......IBS is not a diagnosis.  It just means you have an irritated bowel.  Like you need to be told that!  They symptom treat and you never get real results.  Something is irritating your bowel so you need to find out what food is causing the grief.  It could very well be gluten, from what you described. Don't settle for the old IBS blow off.  They all do that and it's the biggest reason people aren't diagnosed.  You have good reason to believe you have a gluten problem so try the diet and see what happens.  It's difficult to accept that you may never get a definitive diagnosis but don't wait for your gut to be trashed so they can find it on a biopsy. If you really want to, go for a second opinion.....it could not hurt.  Try to find a doctor that specializes in Celiac, if you can.  But the diet may give you more answers.

 

I wish you luck!   

 

Gemini, everything you said is exactly how I feel.  I already told my GI that IBS is just a big catch-all for "I don't know what's wrong with you".  I don't understand that the can obviously see something in there that shouldn't be there and they just dismiss it.  I mean if scalloping isn't supposed to be there, doesn't it warrant an explanation as to why it's there?  Why do they think it isn't an issue??

 

So frustrating!

[kareng]

I'm in Canada so insurance isn't involved.  The paper I have says "Final pathology report".  I have no idea if there are other reports prior to that.  This one does indicate the number of biopsies (11 of one section and 5 of the other) and the size range, and also what they were sent in.  But nothing other than that.  What do you mean "how they are presented"?  Do you think there is some other report that is more detailed?  Because my doctor doesn't have that. 

 

Do you think I'm allowed to request that?  Would another doctor or pathologist be able to review that and come to a different conclusion?

 

Thanks!

You said that your path report only said #1 & 2 but it really said more. So maybe you did get the full thing.

[nvsmom]

I don't know much of anything about interpretting your endo report. I do know that we Canadians have a right to get copies of our labs (and the doctors have a right to charge us a small fee for them ) so I would assume that would apply to a path report too... I'm just assuming. 

 

If Karen and Gemini both think there's more to it, then there probably is.

 

I hope the medical offices with your report don't give you too much of a run around while you are trying to get anwers. Good luck.

[Gemini]

Gemini, everything you said is exactly how I feel.  I already told my GI that IBS is just a big catch-all for "I don't know what's wrong with you".  I don't understand that the can obviously see something in there that shouldn't be there and they just dismiss it.  I mean if scalloping isn't supposed to be there, doesn't it warrant an explanation as to why it's there?  Why do they think it isn't an issue??

 

So frustrating!

I fail to understand it also.  Seems doctors all over do this so it's not just here the States.  Crazy.  I am confident that you have the knowledge and will to get what you want, as far as test results go.  Hang in there as you are on your way to getting some answers.  Remember...the squeaky wheel gets the most oil......