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Stressed Out--What Do I Do Next?


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#1 chickpea77

 
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Posted 25 January 2013 - 08:07 AM

So, if you read my other post you would be aware that we took our 6 1/2 year old for a blood test to check for celiac disease over Christmas holidays. His results were as follows:

tTG IgA: 25 HI (weak positive 20 -30 units)
GLIADIN AS: IgA: 4 (<20 negative)
GLIADIN AB: IgG: 11 (<20 negative)

Background history is that I have "diagnosed undiagnosed" Celiac disease (I got so sick from the gluten challenge to prep for further testing (i had cut wheat out for about 8 months prior to bloodwork) that I was told by the dr to stop. At that time I had never heard of Celiac disease, but when have experienced cc i have suffered so severely that there is NO doubt what the issue is (chronic constipation, stomach bloating-- I literally look 6 or 7 months pregnant, I fall asleep with 20 minutes and cannot be woken up, etc).
k
Fast forward to now, we had my youngest tested because he has been having stomach pain when he eats, and I was sure his test would come back negativ because he wasn't having diarrhea (as far as i knew i wad an anomaly). Well, after his test coming back weak positive I did some research and reached out on this site. i found some great info and got some great advice. I went back to the dr who had ordered the same test to be done again in 3 weeks and told us to boost his gluten intake (he doesn't eat as much as the average child because I make a lot of gluten free meals because of myself. Anyway in the 3 weeks of challenge he lost 4 pounds. The dr is pretty sure it is Celiac disease (he said between the bloodwork--which he said is 95% accurate for Celiac--and the weightloss and stomach pain we basically just proved that he has it).

He is boking us in with a Ped. GI (no word yet as to when appt will be), and he just went for his repeat bloodwork.

I guess my biggest concern is what if his tests come back negative (bloodwork and scope/biopsy)
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#2 chickpea77

 
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Posted 25 January 2013 - 08:13 AM

Sorry something went wrong with the rest of my post...
So, if testing comes back negative, what do I do?
Has anyone had a child with a weak positive tTG and negative on all other bloodwork and have a positive biopsy?
And if the only thing slightly elevated is the tTG and the dr is pretty darn sure it is nothing else, would you raise your child gluten free? Would you take him off of gluten and then reintroduce him to it in a month?
Dr says it should take 3 to 6 months to get in to see the Ped. GI and that we should take him off of gluten until we have a better idea of how far off the scope will be......
What are your thoughts?
TIA :)
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#3 nvsmom

 
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Posted 25 January 2013 - 11:30 AM

My kids tested negative but I took them off gluten anyways. 2/3 of them have shown some real health improvements on a gluten-free diet. I guess I figure, what could it hurt? They now eat more whole foods and have all grown quite a bit since going gluten-free. It's an inconvenience for me as I have to pack their food everywhere we go, but they feel better...

I would make your son gluten-free for a good 6 months if I was you. If there are zero improvements, then let him eat it again but if there are any improvements at all, why let him eat something than hurts him?

Good luck. :)
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