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Totally Confused


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6 replies to this topic

#1 Twister2

 
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Posted 18 December 2004 - 11:18 AM

Hi all. I am now officially confused about my condition. I tested positive for Gliadin Antibodies in October and I just recently had the Endoscopy which turned out to be negative. My GI told me that there was no evidence of Celiac disease on the Endo. I am now totally confused because I am sick as a dog EVERY time I eat anything with gluten in it. My mother and two of my sisters are antibody and Endoscopy positive for Celiacs. All of them are terribly ill. I have the same symptoms, such as severe bloating, muscle and stomach pain, skin itching, mouth sores, severe fatigue, numbness and tingling in my hands and feet and sometimes I have coordination problems in my hands also. I am just wondering if I actually have Celiacs now after the negative biopsy. Anyone have any thoughts????
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#2 Tasha2004

 
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Posted 18 December 2004 - 11:54 AM

I'm on this track now, except only one Gliadin test is elevated and I dont feel anything different if I eat gluten.
In your case, I would just do it.
If you need a firm confirmation you can go to a private lab and have the stool tests.
They told me one elevated gliadin blood test indicates Celiac may develop, but not necessarily.
However, if you are already sick from the gluten what do you have to lose?
I think the private lab tests are a better bet, but they are too pricey for myself at this time.
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Type I Diabetic with IgA positive only, Mom has celiac disease.

#3 Guest_jhmom_*

 
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Posted 18 December 2004 - 02:08 PM

A negative biopsy means NOTHING! If you have positive blood work you should be gluten-free! Some people can have positive blood test and negative biopsies and vice versa. If you need a dx then a stool panel test from www.enterolab.com is what I would do, it is accurate and more sensitve than blood.

If you do not need a dx from a doctor then try the gluten free diet for a couple of months and if your health improves, you need no further testing!

I hope you begin to feel better soon! :D
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#4 lovegrov

 
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Posted 19 December 2004 - 07:05 AM

Go gluten-free and see what happens.

richard
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#5 Kate107

 
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Posted 03 January 2005 - 03:33 PM

I've had two negative blood tests - the first one was following a mostly gluten-free diet, so I had to have a second one after a six week gluten loaded diet. After the second test, I cleared out the gluten regardless of the test, because I was just so sick of feeling lousy. After a few days, I figured "Oh, what the heck - this must be all in my head," and I snacked heavily on cereal one evening. Now two days later, I'm queasy, gassy, I was first constipated and then had explosive, gassy diarrhea. According to the doctor's office, there was no change in my blood test results. What's going on??? I want to see the test results for myself - if the numbers are any higher, even if they're still within the normal range, does that mean anything? And why, during the six weeks of gluten challenge, did some of my symptoms settle down?
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#6 darlindeb25

 
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Posted 04 January 2005 - 03:13 AM

you can be gluten intolerant and not have full blown celiacs yet, but if you remain eating the gluten, in time you will be full blown and it takes even longer to feel better--go gluten-free and feel good--forget the test--deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#7 tom

 
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Posted 04 January 2005 - 02:40 PM

Twister ! Go gluten-free !

Kate ! The blood test has a horrible rate of false negatives. But i'd never imagined a celiac could have symptoms "settle down" during a gluten challenge. Tho now that i think of it, I used to (several years ago) be able to have some gluten w/out getting symptomatic tho i would have the common symptoms w/ a greater amount of gluten.
So there WAS, for me, a time where a gluten-challenge could proceed very differently, depending on the amount of gluten involved. How much gluten were u ingesting for the challenge ?
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07




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