Rebecca's Diagnosis - And follow up info 12/1

Amooliakin · Joined: 09 Oct 2006 Posts: 368 Location: NYC

OK - here is the "official" report. I guess it basically means she has celiac.... but if there is something else I am not understanding, please let me know.

What my doctor told me on the phone was that of 4 possible markers they want to see to be sure of celiac, there were only 3. She said that therefore it was almost certainly celiac... but maybe not. She was very confusing because she said that if it were her child she would go GF and that she is pretty sure it is Celiac. But she also said that as a doctor she had to say that it might not be.

Anyway - this is the Surgical Pathology Report:

Specimin source:
A. Duodenum

Clinical History
8 year old female with abd pain, (+) TTG, r/o celiac

Diagnois

Biopsy of duodenal mucosa with preserved villous architecture. There is a focal mild nonspecific chronic duodenitis associated with focal mild intraepithelial lymphocytosis. Parasites and other pathogenic organisms are not identified.

Comment: While the histopathological findings are mild and nonspecific, the differential includes early/mild celiac disease.
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Amy - Mom to two kids, one with Celiac, and assorted pets...

woodyzee · Joined: 03 Sep 2006 Posts: 83 Location: Northern Illinois

Not sure what it all means either but my doctor says for sure Celiac and here is my report:

1. Duodenum biopsy: Duodenal mucosa with villous blunting, crypt hyperplasia and moderate intrepithelial T-lymphocytosis consistent with celiac disease.

Yours sounds similar maybe just not as advanced?? Just a guess.

I also had:

2. Stomach biopsy: Antral mucosa with moderate chronic gastritis and focal acute inflammation. Patchy reactive mucosal changes. No Heliobacteria seen (negative Diff-Quik stain and negative H. pylori immunostain).

Amooliakin · Joined: 09 Oct 2006 Posts: 368 Location: NYC

ye - I guess we got it early enough that they call it mild. But surely it is Celiac and will get worse if not treated...
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Amy - Mom to two kids, one with Celiac, and assorted pets...

aklap · Joined: 02 Oct 2004 Posts: 8512 Location: WI, USA

aklap · Joined: 02 Oct 2004 Posts: 8512 Location: WI, USA

aklap · Joined: 02 Oct 2004 Posts: 8512 Location: WI, USA

This is kinda cool...anybody else have their path. reports?
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Amooliakin · Joined: 09 Oct 2006 Posts: 368 Location: NYC

Yes Al, the doctor did say she wants to see how Rebecca does GF before she is sure. She said that once Rebecca is GF for 6 months we should come back to her for another test (I assume she meant blood test since I'd hate to have Rebecca go thru another endoscopy)

And I agree, except now that I am more educated (thanks to you all) I worry that if she does NOT improve as much as we hope, it won't be because she does not have Celiac, but because we did not do the diet properly or she is also allergic to milk or something else.
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Amy - Mom to two kids, one with Celiac, and assorted pets...

aklap · Joined: 02 Oct 2004 Posts: 8512 Location: WI, USA

It normal for the docs to see how things go with the GFD. That is one of the criteria for dx'ing CD - improvement with the GFD.

I would not worry about handling the diet. I'll tell you why...It's because you are doing the research and learning what it takes. You are light years ahead of many people in same boat. I have always said those of us that participate in discussion boards or belong to a support group are the cream of the crop. They are the ones that are doing their due diligence so they know what they can and can not eat. Knowledge is Health.

It is possible there may be other food issues...but get one thing figured out first Smile

You and Rebecca will do just fine once you get things figured out!! Keep up the good work!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Amooliakin · Joined: 09 Oct 2006 Posts: 368 Location: NYC

Thanks for the kind words... it is hard though. Definitely there are highs and lows. A few nights ago Rebecca was happier than I have seen her in months. She is a happy kid in general, but she was just laughing and silly and really in a great mood. I couldn't help but wonder if the GF diet was helping.

Then tonight she was cranky and crying over nothing and threw up a little bit and had stomach pain and I just thought Oh No we did something wrong and I don't know what it is and my daughter is suffering....

Thank GOODNESS for these forums. I really would not know what I was doing without you all.
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Amy - Mom to two kids, one with Celiac, and assorted pets...

woodyzee · Joined: 03 Sep 2006 Posts: 83 Location: Northern Illinois

Well since it's cool, per Al Razz

I thought I would add my bloodwork to the mix

Tissue Tranglutaminase normal range 5-8, my results were >100H
Antibody, IGA

Gliadin Antibody (IGA) normal range 11-17, my results were >100H

I am a teacher and asked if over 100 is extra credit Very Happy

My doctor thought it was funny.

My SED, AST and Platelet count were also high. I guess these are indicators of inflammation.

aklap · Joined: 02 Oct 2004 Posts: 8512 Location: WI, USA

aklap · Joined: 02 Oct 2004 Posts: 8512 Location: WI, USA

Amooliakin · Joined: 09 Oct 2006 Posts: 368 Location: NYC

Gee - I don't have a copy of the blood work. I should ask for that. I know the doctor told me that Rebecca had an 8 in something that was supposed to be under 4 but that for some people it goes over 100. I wonder what that was.....
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Amy - Mom to two kids, one with Celiac, and assorted pets...

woodyzee · Joined: 03 Sep 2006 Posts: 83 Location: Northern Illinois

I am supposed to have my first follow-up blood test at the end of December. I definitely feel 10 times better already, so hopefully I am doing things right.

Amooliakin · Joined: 09 Oct 2006 Posts: 368 Location: NYC

We went back to the doctor on Wednesday for the 6 week follow-up visit. Since Rebecca's blood test was positive for celiac and her endoscopy was too, it just remained to see that she improved on the GF diet (which she did) so that makes it official. No big surprise...

But we finally got a copy of her blood test results (we had the biopsy results but not the blood) and saw that it said:

"IgA serological markers for celiac disease detected - Celiac disease is highly likely"

Although the numbers were only slightly out of range, and our doctor said that not too long ago they would have written it off and not even done the biopsy, clearly an early diagnosis is better than a later one. So I was glad to see that in writing.

Also, I asked our doctor what the biopsy really meant and what markers did she see or not see that would or would not indicate celiac.

She said that what was NOT present in Rebecca's case was the villous blunting or the deepening of crypts (she said they go together). She said that again, if this had been tested some years back the diagnosis would have been NEGATIVE for celiac.

However she said the most sensitive indicator which was Intraepithelial lymphocytosis was positive. She said that meant that (in simple terms) cells that were not supposed to be up at the tips of the villi were up there in droves.

I FIANLLY got my genetic test results as well... but I'll put that in another post.

Toodle Oo
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Amy - Mom to two kids, one with Celiac, and assorted pets...