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veggiemomma added a topic in Dermatitis HerpetiformisGetting A Biopsy For Possible Dh On Son?My two year old has a rash originally diagnosed as eczema that developed when he was six months old with the start of solid food. He has had the rash year round since the age of six months.
I finally ignored the original diagnosis and took him to see a pediatric dermatologist. She considered DH before I even mentioned my recent celiac diagnosis.
Problem is the rash presents like DH, is horribly itchy (he scratches until bleeding) but we don't see fluid filled blisters that could be biopsied. The other night there were a few patches that he had yet to scratch that were small but looked almost like the blisters of poison ivy, small but blister looking. By the next day they were scratched and scabby.
Does there have to be an actual blister for the biopsy?
His celiac panel was negative but his IgA was below normal. So we were told the test was possibly a false negative.
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veggiemomma added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsTotal Serum Iga?Does the Total Serum IgA have to be above the normal range in order to be positive for celiac?
I was positive in recent blood work for Endomysial IgA and TTG Serum and told it was highly likely I have celiac. But my Total Serum IgA was in normal range.
I was settling into accepting my diagnosis based off my blood work and was going to skip the biopsy. But last week I went to a GI who said he didn't think I had celiac based off my results.
He recommended gene testing of HLA DQ2 and HLA DQ8. But said even if I have the markers it doesn't mean I have celiac and he would then recommend a biopsy. He repeated that he wasn't convinced I had celiac.
Plus I am not skinny and he said I was not presenting as a typical celiac. He said celiac is a "sexy" diagnosis and he sees people like me all the time that have read up on celiac and come in to the GI thinking they have the disease.
I left his office thinking I was a nut case. But the more I process the more cranky I am becoming. I think a second opinion is in order.
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veggiemomma added a topic in Celiac Meeting RoomHello All~ IntroductionHello All~
I am a very newly diagnosed Celiac with postive bloodwork, living in IN.
My children are presently undergoing testing.
I am a little overwhelmed by the process, the doctors and possible false negatives and where to turn for answers. I could use some Gluten Free powered friends. ☺
Most of my family are also dairy free and vegetarian. So going gluten-free feels a little daunting to me but I'm sure doable. Time to start cooking up some gluten-free menu ideas.
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veggiemomma added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsPlease Help! Newby With Lots Of Questions...And Vegan.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.
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