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Waiting On Celiac Panel Results


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#16 LoveMyDucklings

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Posted 23 July 2013 - 06:43 AM

Yeah, there isn't a ref range provided on the paper for the IgA.
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#17 LoveMyDucklings

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Posted 23 July 2013 - 02:38 PM

There isn't a ref range listed on the paper.
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#18 LoveMyDucklings

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Posted 31 July 2013 - 07:46 PM

Ped GI was just as unhelpful. Says she "senses that it's just stool withholding" and need to have her on enemas and stool softeners to get her over the anxiety and then she'll get better. She ran a CBC, thyroid, kidney and liver function, and checked vit d levels. No further testing. We go back in a month.
An enema a day for 3 days in a row, plus 1/2 cap of miralax in 4 oz of fluid, drank in 20 minutes, twice a day. After the 3 days, continue the miralax. She wants her pooping daily. If she doesn't, then increase the miralax. If that doesn't help, or she won't take more miralax, then an enema daily! :o
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#19 seezee

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Posted 10 August 2013 - 04:50 AM

I was recently diagnosed with celiac after my doctor misread my lab results. I was tested 4 years ago when my daughter was first diagnosed and my doctor incorrectly interpreted the lab results as negative. My IGA was very, very low. I had a followup lab 4 years at a checkup that showed something but the doctor wasn't sure what it meant.  I went to a celiac doctor at Beth Israel celiac center who called the lab because she had given me non-standard tests. It turned out that I am IGA deficient and that negates the other negative results. He said a percentage of people with celiac are IGA deficient. They did another test and I think the test was called Anti-DGP and that was positive and then the biopsy was positive. The specialists advice is that many doctors and labs misinterpret results. It's good to work with someone who understands the different types of tests for celiac and what to look for. I think a lot of labs aren't all that sure either and that surprised me too. If the ped GI is not helpful then get someone else. We went to 3 ped GI's before there was someone nice that we could work with.

 

I really don't believe in "stool withholding". If the system isn't working somethings going wrong. 

 

I also have a friend who has celiac and her daughter has non-celiac gluten intolerance. 


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#20 LoveMyDucklings

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Posted 10 August 2013 - 05:17 AM

Thank you seezee! It's so good to have support, and have someone tell you that you're right to so what you're doing, even if it's just over the Internet. ;) My husband is deployed right now, so while he supports me, it's not the same as when he is home.
My daughter has a rash, which started as just a few dots. The ped thought it was molluscum (it doesn't look like pics online of molluscum), and the ped GI asked if she had a rash, I said yes, she didnt go any further with it, didnt even look at it. Now the rash is much worse, so I called her PCM yesterday. They put in a referral to see derm and also a second opinion with a different ped GI.
I'm thinking about having myself tested for celiac, as I've noticed my bowel habits don't seem right, and I feel "sick" after I eat, tired a lot, plus some migraines.
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