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Please Help! Newby With Lots Of Questions...And Vegan.

veggiemomma

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veggiemomma Rookie
veggiemomma
Posted

Hello All~

And thanks in advance for any feedback.

My oldest has had a host of celiac symptoms that go back for a long time. In the last few years her symptoms have gotten worse. I have been unwilling to accept the doctor's opinion that it may be IBS and "have a nice day." So upon my urging (I think doc thinks I'm crazy) he was willing to test her. Only I don't think a full celiac panel was run and what he did test her for came back negative.

While we were awaiting test results on my daughter I asked my doctor to run the celiac panel on me at my annual check up. I have Hashimoto's disease and though I didn't have many symptoms on the check list I thought it was worth a look. To my surprise I tested positive. I was prepared to be a supportive parent to a child with celiac, not land myself with the diagnosis. I am still stunned and in denial. I feel like I should have a biopsy to confirm Celiac before committing myself to a life without gluten. Though I'm not sure if that is necessary.

My D, B12 and Iron were all very low. We are a house of vegetarian/vegans and I do take a B12 supplement.

These were my results~

~Celiac Endomysial IgA = Positive

~Celiac Gliadin Ser IgA = 2.1U

~Celiac Glidin Ser IgG = 11.8U

~Celiac TTG Serum QN = 63.2U

~Celiac Total Serum IgA = 154mg

I am confused about what I've read about IgA deficiency and autoimmune diseases like mine, Hashimotos. Could this create a false positive? Should I accept the positive blood work and skip the biopsy?

I went gluten free for a week and felt better. Better in ways I didn't relate to Celiac. My head didn't hurt, the anxiety lifted, the head fog lifted, the irritability lifted. I ate gluten on day eight and felt horrible. I even had a stomach issues which are not my norm. But I am still left wondering if knowing about the Celiac possibility had triggered a psychosomatic effect.

Our youngest child was tested for Celiac because a dermatologist suspected DH. And his panel came back negative. I have yet to see the results myself but was told his IgA was low and could have been a false negative so we should go to see a GI specialist.

I have two other children and was told to have them tested as well. But what does one do with negative blood work? Like my daughter who still has symptoms, I think we should go gluten free. But a positive test sure would make a dietary change easier to commit to. I don't know what doctors are best to answer questions about Celiac. I meet with my GI for the first time next week. If gluten is a possible issue for some people (gene markers) and even those that test negative on blood work wouldn't it be better to go gluten free before Celiac develops? I'm overwhelmed.

Thanks,

Veggiemomma

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cheesycow5 Newbie
cheesycow5
Posted

Go gluten free. How you feel will be the most reliable indicator. No cheating for at least two months, but you could feel better well before that. Nothing to lose.

Jestgar Rising Star
Jestgar
Posted

I went gluten free for a week and felt better. Better in ways I didn't relate to Celiac. My head didn't hurt, the anxiety lifted, the head fog lifted, the irritability lifted.

These are all symptoms of Celiac.....

A low IgA is more likely to give you a false negative, not a false positive.

nora-n Rookie
nora-n
Posted

Hi!

There are celiac vegan blogs and websites somewhere.

The EMA test is very very very specific for celiac.

Here in Europe they ususally test the rest of the family too, and they find lots and lots of people without symptoms!

In Finland, they tested a lot of old people for a research study, and 3% were positive, and they had no symptoms.

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