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Endoscopy Results
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21 posts in this topic

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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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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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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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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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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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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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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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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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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Beat the Wheat!!!!,

LOL Jill, I like that.

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

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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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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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Hmmm.. how bout, "Drinking and Throwing Up: The Celiac Way" ?

LOL.. dun mind. But if you use it, I want credit! =P

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Ahaha! You crack me up!

I'll write that when I sign your copy of my book--that is, when my @$$ gets started on writing it.

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So do I need to glue you back together since I cracked you'd up? =P

LOL, I know what you mean! I've had this idea for a book, for almost 3 years now.. and ugh, just need to get going! Even it it turns out sucky, better to try. =)

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Yeah......I've always thought (or rather, since diagnosis thought) that it would be really cool to write a book on celiac disease.........I'm not going to try anything for a few years, but it sounds like a cool idea.

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Alexolua--

Bust out the glue!!!!!

:lol:

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I'm not going to try anything for a few years (writing a book), but it sounds like a cool idea.

celiac3270, I wouldn't be surprised if you were able to do one now.. since you seem so intelligent and hard working on these boards! =)

LOL Jill.. lemme find the glue for ya. =P

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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