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I Still Don't Know What's Wrong With Me

Sandi*

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Sandi* Apprentice
Sandi*
Posted

I've head digestive problems for as long as I can remember, mostly constipation, pain, gas, and horrible bloating. I was diagnosed with IBS a couple years ago. I've also been tested for fructose and lactose malabsorption and for celiac disease but all tests were negative. Here are my test results:

t-Transglutaminase (tTG) IgA 1 U/mL

t-Transglutaminase (tTG) IgG 1 U/mL

Immunoglobulin A, Qn, Serum 10 L mg/dL

The thing is, I was negative for celiac disease but my IgA is really low so I know that can give a false negative. However, my GI doc also proceeded with an endoscopy anyway, and found nothing. I've also had the camera pill, found a few unspecified lesions but that was it.

My questions are, if my villi were flattened, would the camera pill see that, or is it not as precise? Also, is it possible to still have celiac disease (not just gluten sensitivity but actual celiac disease) that was somehow missed with the scope?

I moved last year so I need to find a new GI anyway so maybe I'll have them do the tests again...I do feel better not eating gluten but I've never lasted long enough (four months or a strict diet at the most) to see real results, my results were only mixed so I went back to eating gluten.

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darlindeb25 Collaborator
darlindeb25
Posted
Also, is it possible to still have celiac disease (not just gluten sensitivity but actual celiac disease) that was somehow missed with the scope?

Absolutely possible to have the disease and have it be missed by an endoscopy. Dr. Peter Green spoke at one of our supoort groups last night, and he said, an endoscopy is only able to go about 6" into the intestine, and the damage could be much deeper...he says a positive blood test is a diagnosis...this is a huge change in opinion for him.

Then, on the other hand, it is also just as possible to have a gluten intolerance without celiac, although one day I think the scientist will realize it is all one thing. People have a gluten intolerance can be much sicker than someone with celiac disease, and it is all an autoimmune reaction, no matter which you have.

My sister is a diagnosed celiac, for 9 years last March...I went gluten free 9 years ago this month. My neuro did a celiac screening on me last June, I came back with double DQ1 genes, which as of now, most doctors believe cannot be celiac...my doctor says I do have it. I am super sensitive to gluten, and react to all grains, which can conceivably contain low levels of gluten simply from cross contamination. Many gluten intolerant/celiacs are able to do ok with very low levels of gluten.

In my opinion, you should go gluten free, and give it more time than 4 months. A body cannot heal in 4 months.

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