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Confusion Now Over.


Bethe444

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Bethe444 Newbie

Recently I posted regarding genetic testing results, which the nurse at my docs office said were negative. I went to the doctor today so he could explain the results, and I'm glad I did. The genetic tests were never done. It seems to be that here in Michigan -- atleast the part I live in (Suburbs) they do not have access to the test. I would love to have it done, but Im not sure if insurance would cover it -- I probobly should for my family. The funny thing is that when we went over the tests today. He said I did not test positive for sprue. However, in early April the Sprue, Iga, Igg -gliadin panel was high (ofcourse when I was not gluten free). The tests he read today were taken a month later -- gluten free. So now I know - especially being B12 anemic and feeling much better staying away from gluten. I just wanted to share, and if anyone has any idea on how I can get the genetic testing (at a reasonable cost -- not sure if my insurance covers it) I would love to know.

I'm just very thankful that I finally know that I'm not crazy and know what to avoid --- I will miss real chocolate cake though! :D


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mushroom Proficient
Recently I posted regarding genetic testing results, which the nurse at my docs office said were negative. I went to the doctor today so he could explain the results, and I'm glad I did. The genetic tests were never done. It seems to be that here in Michigan -- atleast the part I live in (Suburbs) they do not have access to the test. I would love to have it done, but Im not sure if insurance would cover it -- I probobly should for my family. The funny thing is that when we went over the tests today. He said I did not test positive for sprue. However, in early April the Sprue, Iga, Igg -gliadin panel was high (ofcourse when I was not gluten free). The tests he read today were taken a month later -- gluten free. So now I know - especially being B12 anemic and feeling much better staying away from gluten. I just wanted to share, and if anyone has any idea on how I can get the genetic testing (at a reasonable cost -- not sure if my insurance covers it) I would love to know.

I'm just very thankful that I finally know that I'm not crazy and know what to avoid --- I will miss real chocolate cake though! :D

That nurse!!! Of course test results are negative if the tests are never done in the first place.

I'm glad the gluten free diet is having such a positive response for you. Hope your B12 goes up too--your are taking it, right?? You will feel so much better I am sure.

Bethe444 Newbie
That nurse!!! Of course test results are negative if the tests are never done in the first place.

I'm glad the gluten free diet is having such a positive response for you. Hope your B12 goes up too--your are taking it, right?? You will feel so much better I am sure.

Yes, I had my second B12 shot today. I'm waiting for it to kick in, I felt pretty good for the first 2 weeks with the last one. I'm now really addicted to the shot.... I can't remember feeling good like that.

mushroom Proficient
Yes, I had my second B12 shot today. I'm waiting for it to kick in, I felt pretty good for the first 2 weeks with the last one. I'm now really addicted to the shot.... I can't remember feeling good like that.

Yeah, it really does give you a burst/boost. I had three of them and that's all it took to get me to overflowing. Now I am only to have them every three months. :o

lizard00 Enthusiast

I'm sorry, but I'm confused as to why you can't get the test done. My labs were sent to California or somewhere on the west coast to Promethues labs for testing. I'm not sure if a lab around here does them, but my doc just uses Prometheus as his standard for celiac testing.

You could look into Enterolab for genetic testing.

I'm glad you're feeling better with the B12 though! That's some great stuff. :)

happygirl Collaborator

Your doctor can order, he's just not.

You can use Kimball Genetics, which is used by the University of Chicago's Celiac Center.

Open Original Shared Link

Ask your doctor if he'd be willing to use them.

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    • Mettedkny
      Thank you so much for your validation. I completely agree with you that the crackers COULD be the culprit even with very small trace amounts (less than 20ppm) and accumulating over time - I am at the point where I am about to request that my son gets retested to make sure that my "control subject" is still testing perfectly lol. I have a meeting with my celiac disease doc tomorrow and will run the crackers by him to see if he is willing to retest in a few weeks. I have not had any of them for the past 3 weeks so far, so fingers crossed, we can retest and hopefully find out if it is them. And no - I have been scouring EVERYTHING to make sure nothing else has changed. Only use gluten-free lip products and toothpaste so not there either (but very good suggestion). Thank you for validating me. I feel like many are just saying "you are not being gluten-free enough - but I do have a perfect 16 year track record that proves otherwise - so has to be something sneaky.
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    • gerbilgirl
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