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kkay

Blood test results for son

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I was just officially diagnosed with celiac disease last week.  I also have a brother with celiac and most likely a niece with it.  I took my five kids to be screened as soon as I was diagnosed.  Despite my telling the doctor what tests he needed to do - he only tested them for TTG Iga!  I called the nurse back today and explained to her that it was not good enough because if any of my kids were Iga deficient, the test would not be telling us anything (they refuse to start with the full celiac panel, I will have to get a GI referral for that for the kids that I think need it).  So I am waiting to hear back from the doctor.

Four of my kids' results were 0, but my 14 year old result was >100.  0 - 3 was negative, 4 - 10 weak positive, and anything over 11 was positive.

I told the nurse I wanted the endoscopy done on my son.  They suggested he go gluten free and just see if it helps him (he spends so much time in the bathroom with stomach aches), but I want the endoscopy done.  My 14 year old son who eats a lot is not going to follow the diet unless he has to, so I need medical science to back me up, ha, ha.

I am curious though.  How likely do you think it is that he has celiac based on his blood results?

Thanks!

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Odds are he has celiac disease.  That TTG score is pretty high.  But, as you said, an endoscopy would be help establish the amount of damage and he would NEVER question his diagnosis (and neither would any future doctors as long as you keep all records).  I personally would push for it.

Your other kids?  Did they check them for an IgA deficiency?  Chances are they may test like you.  My PCP ran the complete panel on my kid at my insistence because I test negative on everything but the DGP IgA and my biopsies revealed a Marsh Stage IIIB.  My PCP also checks my kid for anemia since that's how I presented.  She will get tested every few years (don't tell her but she's getting re-checked over the holiday break!).  She hates needles, but she already has Raynauld's syndrome (blue fingers and toes) and she could develop additional AI disorders due to our family history of MS, RA, Lupus, Grave's, Hashi's and celiac disease.  Yep, the odds are not in her favor.  

If your kids are IgA deficient, they should be screened for celiac disease.  Not everyone presents with symptoms.  I had anemia that was blamed on, you guessed it....being a woman!  No GI issues at all at the time I was diagnosed.  So, they need to be checked.  All the world's leading celiac disease experts recommend first degree relative screening.  Show that information to your doctor!  

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