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Endoscopy Results


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#1 Guest_~wAvE WeT sAnD~_*

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Posted 10 August 2004 - 07:58 PM

Hey gluten-free friends!!!


Here's the update:

My GI's head nurse called this morning and told me my biopsy was negative. Since I tested positive for Gliadin antibodies, I still consider myself a Celiac.

My family had the date of their bloodwork changed so they wouldn't have to drive as far as I did for mine. They went to our family doctor yesterday, and when the nurse took the vials, she said, "I know a guy at our church who can't take communion wafers." Ding ding ding! :o (tell her what she's won, Johnny ) :lol:
This particular nurse and most of the others aren't familiar with the disease--they've never seen celiac disease patients, but the thing is with them and most people I talk to is that they know gluten-free people, but they don't realize that for a lot of them it's more than "can't eat bread and pasta" or "can't take communion wafers". I just pray to God that they'll learn, in and this case, they should, since we've been patients for 13 years. I'm sure he's familiar, but the nurses need some help. Oh well.

I have a thyroid test on 8/13 (Fri.) I'll keep you posted!!

Thank you, and lots of
:wub: ,
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#2 Alexolua

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Posted 11 August 2004 - 06:49 PM

Thanks for the update. Too bad you were negative, since you wanted the "gold stanard" proof, right? Glad you sound in good spirits though. =)

Since I tested positive for Gliadin antibodies, I still consider myself a Celiac.

Even if you didn't have the Gliadin, you've been feeling better, if I remember correctly? So another sign of Celiac.

As for the nurses, if you have the patience.. teach 'em! LOL
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#3 deweyhughie

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Posted 12 August 2004 - 05:18 AM

Jill,

Loved the "tell her what she's won, Johnny" comment! :D

As for your biopsy, how many samples were taken? From what parts of the small intestine? Who did the pathology? There are hundreds (maybe even thousands) of people running around who have had biopsies botched by either inept gastroenterologists (because they didn't take enough biopsies or took them from the wrong places) or inept pathologists (because they don't know how to properly diagnose celiac from the biopsy slide).

At the very least, you may want to have your slides sent somewhere else for a second opinion. I would recommend the Celiac Center at the University of Maryland.
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Best wishes,
Dewey
Marion, IA

#4 woots

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Posted 12 August 2004 - 05:52 AM

i am told from the professor in england that carried out the biopsi on my daugther that you should still be eating gluten containing food right up to the biopsi. he says that is because your bod will gradually heal and the Villi will grow back and give a negative result, meaning that your blood will say one thing but the biopsi will say another.

dont know whether that helps and hope that everything goes well for you.

mark wootton
England
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Daughter Molly (19months old) Gluten Free 06/04 + Milk / Soya Free (07/04)

#5 GEF

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Posted 12 August 2004 - 06:08 AM

Hi Jill!

Glad to hear that you got your results back so quickly! In the celiac arena... having negative results can be a good & a bad thing.... as I'm sure you know. In regards to education about gluten intol / celiac, could you imagine if they just replace those IBS ads with celiac ones?? I want a bumper sticker....

As always, it's a pleasure to read your posts!

Gretchen
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#6 burdee

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Posted 12 August 2004 - 11:15 AM

Hey Jill: I LOVE your sense of humor. :lol: We all need more of that to get us through those frustrating experiences with the medical profession. <_<
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#7 lovegrov

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Posted 12 August 2004 - 12:28 PM

Dr. Fassano (sp?) at the University of Maryland is no longer reading slides unless you are a patient at the center. I think word got out that he would do this and he started getting so many requests he became overwhelmed.

richard
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#8 Guest_~wAvE WeT sAnD~_*

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Posted 12 August 2004 - 12:36 PM

Hey, everybody!!!

Thanks for all the replies...my humor is a part of who I am, and after the "doctor experience", you have to laugh at some of the antics of the medical profession. It's amazing--many people know what celiac disease is, but like the song, it's strictly "eyes without a face"-so many symptoms, but what the heck is it?

My thyroid test is tomorrow!


Beat the Wheat!!!!,
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#9 deweyhughie

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Posted 12 August 2004 - 05:53 PM

Good info, Richard. Thanks for the update on that! I'm pretty sure the University of Chicago will check your slides for you. Also, the Univ. of Iowa will do them too - I checked with them once for my mom, and I think it was around $150.
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Best wishes,
Dewey
Marion, IA

#10 Alexolua

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Posted 12 August 2004 - 07:26 PM

Beat the Wheat!!!!,

LOL Jill, I like that.
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#11 Guest_~wAvE WeT sAnD~_*

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Posted 12 August 2004 - 07:43 PM

Haha thanks. I was originally going to write a book about my college experience, but now I'm going to write one about celiac disease experiences to promote awareness. I think "Beat the Wheat" is a great title :D

Actually, now that I'm thinking of it....I'm adding it to my signature!!!
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#12 Alexolua

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Posted 12 August 2004 - 08:03 PM

Why not write one about dealing with Celiac as a College student? You can combine it! Or you could write on about celiac disease, then one about the college experience and having celiac disease. Just some ideas.

That would make a nice book title, though could distract some people into thinking gluten is only in wheat, don't ya think? Or maybe not, thinking out loud (well not too loud, since I'm typing). =)
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#13 Guest_~wAvE WeT sAnD~_*

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Posted 12 August 2004 - 08:07 PM

Good idea!!!! I'll format the title as "Beat the Wheat (barley, rye, oats, and malt)" ;)
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#14 Alexolua

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Posted 12 August 2004 - 08:49 PM

Ya know.. that actually still sounds good.

And how bout for a college book, you could do, "Celiacs Can Get Drunk Too!"

LOL.. I dunno, being silly. =P
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#15 Guest_~wAvE WeT sAnD~_*

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Posted 12 August 2004 - 09:48 PM

AHAHAHAHAHAHAHAHAHA!

The first time I vomited, I was drinking. I wasn't even drunk, it was the malt that killed me. Although 99 Apples is not something youshould drink a lot of when you're petite (I had Smirnoff too--that'll do it).
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