Endo Question

[millersinkenya]

My 12 month old daughter had an endoscopy today because my son is celiac. We are testing everyone in the family. She has started to show a similar pattern as he did at her age.

The GI doc came out and gave me 4 photos from the endo today. He said that the biopsies will tell us one way or another, but there were two characteristic things he noted... there was quite a bit of smoothing out of the folds- he expected them to be much larger, but they werent. Secondly, there were white bump things in another picture. I am not sure what these are. Anyways, he wants her off all wheat ASAP (no big deal because she is refusing all food other than milk) and said that he assumes it is going to come back positive.

I am not exactly sure what he said because we live overseas and despite speaking the same language, there is a lot lost in translation- accent, different words, rate of speech, etc.

Do these two things sound like something that would come up for celiac or not? My son's pics did not have white bumps and his folds (or whatever you call them) are more raised than my daughter's picture. If you look at figure 3 on this link, click on it and it will show you 5 pics- the last one has a picture of the bumps that my daughter had on her picture... for reference: Open Original Shared Link

Thoughts?

[psawyer]

Note: the site linked to requires registration for access.

[millersinkenya]

Note: the site linked to requires registration for access.

Sorry! I just got it off of google. I didn't sign in to see it, so I had no idea.

Anyways, I will see if I can find another one.

[millersinkenya]

Try this:

Open Original Shared Link

[hunter6009]

My 12 month old daughter had an endoscopy today because my son is celiac. We are testing everyone in the family. She has started to show a similar pattern as he did at her age.

The GI doc came out and gave me 4 photos from the endo today. He said that the biopsies will tell us one way or another, but there were two characteristic things he noted... there was quite a bit of smoothing out of the folds- he expected them to be much larger, but they werent. Secondly, there were white bump things in another picture. I am not sure what these are. Anyways, he wants her off all wheat ASAP (no big deal because she is refusing all food other than milk) and said that he assumes it is going to come back positive.

I am not exactly sure what he said because we live overseas and despite speaking the same language, there is a lot lost in translation- accent, different words, rate of speech, etc.

Do these two things sound like something that would come up for celiac or not? My son's pics did not have white bumps and his folds (or whatever you call them) are more raised than my daughter's picture. If you look at figure 3 on this link, click on it and it will show you 5 pics- the last one has a picture of the bumps that my daughter had on her picture... for reference: Open Original Shared Link

Thoughts?

Hi there! The most tell-tale sign they look for is sprue and scalloping (folds) of the duodenum. Rule of thumb is less than 3 folds, suggestive of celiac. Smooth folds suggests villous atrophy (damage to the folds from something- ie. gluten). My photos looked like smooth pipes! What did her labs say? Those are highly indicitive as well. Can have SOME false negatives for children although still rare.

If it IS celiac, you caught it early!! Way to go mom!

[millersinkenya]

Hi there! The most tell-tale sign they look for is sprue and scalloping (folds) of the duodenum. Rule of thumb is less than 3 folds, suggestive of celiac. Smooth folds suggests villous atrophy (damage to the folds from something- ie. gluten). My photos looked like smooth pipes! What did her labs say? Those are highly indicitive as well. Can have SOME false negatives for children although still rare.

If it IS celiac, you caught it early!! Way to go mom!

THanks for your reply! We wont get her labs back for another week or so. They had to be shiped to South Africa to be processed. Since my son has it, we went ahead and did the testing. The doc said that the folds looks smoother than he thought was normal, but we do not have the biopsy reports back. They look smoother on the photo than things I have seen online, but I have no idea what I am looking for, really Ever heard of the white bumps?

[ravenwoodglass]

Hi there! The most tell-tale sign they look for is sprue and scalloping (folds) of the duodenum. Rule of thumb is less than 3 folds, suggestive of celiac. Smooth folds suggests villous atrophy (damage to the folds from something- ie. gluten). My photos looked like smooth pipes! What did her labs say? Those are highly indicitive as well. Can have SOME false negatives for children although still rare.

If it IS celiac, you caught it early!! Way to go mom!

Actually false negatives are far from rare. The rate is close to 20 to 30% and may be even higher in children. When all testing for celiac is done a trial of the diet is always advised.

[hunter6009]

Actually false negatives are far from rare. The rate is close to 20 to 30% and may be even higher in children. When all testing for celiac is done a trial of the diet is always advised.

It depends on what test you are talking about. tTG has a false negative rate of 1% in national labs (LabCorp, Quest, etc). Is a little higher in children but usually only those under the age of 2.

Here is a good link and quote from the link for more info:

"Because of the major implications of a diagnosis of coeliac disease, professional guidelines recommend that a positive blood test is still followed by an endoscopy/gastroscopy and biopsy. A negative serology test may still be followed by a recommendation for endoscopy and duodenal biopsy if clinical suspicion remains high due to the 1 in 100 "false-negative" result. As such, tissue biopsy is still considered the gold standard in the diagnosis of coeliac disease.[9][17][56]"

Open Original Shared Link

And another...

Open Original Shared Link

[hunter6009]

THanks for your reply! We wont get her labs back for another week or so. They had to be shiped to South Africa to be processed. Since my son has it, we went ahead and did the testing. The doc said that the folds looks smoother than he thought was normal, but we do not have the biopsy reports back. They look smoother on the photo than things I have seen online, but I have no idea what I am looking for, really Ever heard of the white bumps?

I've heard about canker sores for sure (apahtous ulcers- sp?). Two clinicians specializing in celiac spoke at a conference in my area and this was one of their slides. Are they on the tongue or cheek area?

[millersinkenya]

I've heard about canker sores for sure (apahtous ulcers- sp?). Two clinicians specializing in celiac spoke at a conference in my area and this was one of their slides. Are they on the tongue or cheek area?

no, they are in the esophogus... the GI saw them during the endoscopy.

[The Horticulturalist]

no, they are in the esophogus... the GI saw them during the endoscopy.

I didn't think that celiac would show up in the esophagus, perhaps someone with more knowledge can enlighten us?

Typically, but not exclusively, you might expect to see it in a child in the duodenal bulb area,at least that's what I've read and what our paed GI said. did he comment on that?

My son had obvious areas of erythema in the duodenal bulb, further down the duodenum it looked perfectly normal in the photos but biopsies revealed mild villous atrophy there, and moderate atrophy in the bulb area. Did he biopsy those areas?

[mommida]

I can't say for certain, because it needs to be tested for and diagnosed by a pathologist. (Make sure the biopsies are being tested for eosinophils. If the test isn't ordered ~ it won't be done.) It looks like possible embbed eosinophils. Our family's experience and endoscopy pictures were very vivid showing all aspects of the symptoms. I have only *heard* of cases with embedded eosinophils. I don't think anyone calls eosinophils lumps as a usual description. You can search eosinophilic esophagitus.

I have heard of an HPV infection that causes "wart" like growths that attack individuals in different tissues. As an example when the lungs are attacked it is recurrent respiratory papillomatosis. So try a search on papillomatosis in the esophagus.

Sorry I can't be more helpful. My daughter is having and endoscope on Wed. due to eosinophilic esophagitus complications. I will get a chance to see pics on an active case of EE that hopefullly isn't out of control.