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The Great Testing Saga

DarkIvy

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DarkIvy Explorer
DarkIvy
Posted

Hey all.

I posted a couple weeks ago about my initial stint with being gluten free, how celiac runs in my family and I decided to try it to see if I would feel better.

I got back on gluten in time for my regular check up with my regular doctor. I'd been on gluten for about 5 days and when I brought up my concern about celiac with her, she decided it would be a good idea to run some blood tests. They came back negative, which isn't surprising... I hear it happens a lot and since I had just started a "normal" diet again...

I FINALLY saw a gastroenterologist yesterday. I've been eating gluten again since Friday. I now have a biopsy scheduled for two weeks from now and they drew more blood to do some "serum" test I think, and I'm supposed to do a couple of stool tests in the meantime. It's pretty intense. My regular doctor faxed over my blood test results and the GI said sometimes there are people who don't produce IGA in the first place and that's why the tests don't come up positive. He said something about another patient that has a similar ancestral background as I do who doesn't produce IGA... I'm not going to lie, I'm pretty confused about all of these tests and what they do.

So long story short, I'm stuck on gluten for the next two weeks and am already kind of a mess. I can't drive much anymore because I start to get very fuzzy and drive pretty poorly. I cry at random things. I'm exhausted and can't get much done. Oh, and all of the bowel symptoms to boot. It's awful.

To top it all off, I found a blister on my arm. It's itchy and painful and definitely not a bug bite. It oozes and it kind of hard and bright bright red. I've had very similar blisters before on my ankle... about three of them. It started last summer and I assumed they were nasty bug bites... until they came back a few months later in the exact same place. They come and go now and are really itchy. When I went to the GI, I wanted to show him but they were faded already. But now I have this new one on my arm that looks very similar to the ones on my ankle. WTF? Could it be DH? Am I overreacting and freaking out in the midst of all of this junk going on? I understand that one can have celiac diagnosed with a biopsy of a DH blister... would it make sense for me then to call my dermatologist and see if I can get in before the endoscopy? If they could just diagnose it that way, it would be ten times easier for me. I need to be gluten free again as soon as possible... I've got a life to live and this is interfering like none other.

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Murph Newbie
Murph
Posted

Trying to get a dermatologist appt sure makes sense to me. DH = celiac is what I've always heard.

And u certainly need to be gluten-free asap.

I don't think being on gluten for 5 days for the 1st test was anywhere near long enough for a valid test. Other posts go over some recent research on this, but like everything else in the celiac world I'm sure it varies greatly.

A few years ago, a Stanford doc (whose name I can't even say w/out using "jackass" as a middle name) kept trying to get me to eat gluten for a month!

DarkIvy Explorer
DarkIvy
Posted
  • Author
Trying to get a dermatologist appt sure makes sense to me. DH = celiac is what I've always heard.

And u certainly need to be gluten-free asap.

I don't think being on gluten for 5 days for the 1st test was anywhere near long enough for a valid test. Other posts go over some recent research on this, but like everything else in the celiac world I'm sure it varies greatly.

A few years ago, a Stanford doc (whose name I can't even say w/out using "jackass" as a middle name) kept trying to get me to eat gluten for a month!

I didn't end up calling the dermatologist today. I keep looking at my ONE new blister like I'm insane: it probably is just a pimple. My dad's convinced it's not, my sister is convinced it is a zit. Besides, I was too tired to drive.

My dad's planning on calling my GI tomorrow to see if maybe something can be done about the situation. This clearly isn't working, and obviously gluten is an issue. My dad tends to be pretty assertive, so maybe something will be accomplished by it all. *Sigh* I feel so deteriorated these days...

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    • trents
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    • Trish G
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      By kpf · Posted

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    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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