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Do I Or Dont I? Help Me Please!

JessicaB

By JessicaB
in Coping with Celiac Disease

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JessicaB Explorer
JessicaB
Posted

Hi everyone! I just rejoined this forum with some recent problems ive been having i knew i could come back for some comfort. I was on and off here since last december and stopped the gluten-free diet June of this year. I went throught multiple tests, bld wk, and biopsys since i had my daughter in july 04. I feel like ive been through it all. My bloodwork said positive and my biopsies showed no damage! I went on the diet then gradually fell of of it. I have been under some stress lately and the pain is picking back up again. I have hot flashes, really bad stomach pains off and on, bloating, dizzyness, const. Does this sound like anyone else??? Im thinking about going gluten-free for good! My doc said i may only have a wheat intolerance? What!!!

Please post some comments or email me Please... I need some advice...

Thanks (((((HUGS)))))

Jessica

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par18 Explorer
par18
Posted

Why don't you just go back on the diet and stay on it? What happend when you went on the diet last year? Did it seem to help at all? I don't think anyone on this board can say if you do or don't. Only you know how you feel when you try it. I think you can get tested forever and may or may not show anything. If you feel the diet helps then I guess it really does not matter what the tests say. What do you think?

Tom

Mtndog Collaborator
Mtndog
Posted

If your bloodwork said positive, consider yourself gluten intolerant. A false positive is rare and a false negative is common. I had "borderline" positive bloodwork, my biopsy showed NO damage and I was so sick I looked like a skeleton. Went gluten-free and gained the weight back and am much healthier. It didn't resolve everything (I still have residual joint pain and neuro symptoms) but 75% better and working on the rest!

If it feels good, in this case, do it! :P

chrissy Collaborator
chrissy
Posted

what type of tests did the doc run? a TTg is specific for celiac disease, but AGA is not as specific for it. since celiac damage can be patchy, damage can be missed by biopsies. 2 of my girls did not show positive biopsies (the 3rd wasn't scoped). their TTg levels have dropped on the gluten free diet. the doc said that they probably did have celiac damage due to the level of their TTg numbers.

moomama18 Newbie
moomama18
Posted

my daughter had a false negative blood test because her IGA was low. then her biopsy showed up normal as well because she had not had enough gluten in her prior to the test. clinically, she screams celiac's, so she was diagnosed as probable celiac's so that we can run tests on her when she gets older. if you feel better, do the diet - there's no harm in it.

CarlaB Enthusiast
CarlaB
Posted

You MAY have had positive blood work and a negative biopsy because you caught it early. There has to be a stage of the disease where the intestines aren't damaged YET. If you feel better gluten-free, then stay gluten-free for good. If you go back to eating gluten, it may take time to start feeling bad again because your body did some healing, but if you are intolerant, it WILL start to affect you again.

Guhlia Rising Star
Guhlia
Posted

Hey Jessica! I was wondering what ever happened to you. If you had positive bloodwork, then you have Celiac and you need to stay gluten free for life. If you can't do it for yourself, do it for your beautiful little girl (BTW, I love getting the pictures). She needs for you to stay strong and healthy. If you need support, you know you can always lean on me.

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SchnauzerMom Rookie
SchnauzerMom
Posted

If you feel better on a gluten free diet then I suggest staying on it no matter what the tests results are. I never had tests done. I just know when I eat gluten eventually (not always right away) I feel sick and it lasts several hours to several days. Acid stomach, cramps, IBS, gas, etc. When I stay off gluten I feel great.

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