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Now I'm Confused!

ptkds

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ptkds Community Regular
ptkds
Posted

Two days ago, the dr's office told me that my dd#2 has celiac disease. Then today the dr calls me and tells me that they got more results in and she is negative, although some other number was high. He said her IgA was fine. So I asked him about IgA deficiency and he said it could be a possiblilty but they would have to do another test on both dd's to check for that because it is a diferent test than the celiac panel that they already did. So now I have to drag my 2 older dd's back to get blood drawn again.

So can someone explain this to me? How can 1 number be high and 1 dr say it is Celiac, then another dr says it isn't because some other number is not high? The 1st time I talked to them, it was my dr who diagnosed me, and for some reason his nurse had my dd's results. But today my dd's pedi called me.

So have a completely confused yall?? :blink: I am really tired right now, so I can't really think straight, much less type!

If you can understand all this, then thanks for reading!!! Please help!!

ptkds

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Ursa Major Collaborator
Ursa Major
Posted

If you have celiac disease, one daughter has been diagnosed as well, and one of your second daughter's test results was high, it is VERY likely that it was because of celiac disease as well. If they were my own kids, I'd just put the whole gang on a gluten-free diet, to see how they'll respond to it, and if you can see positive changes.

All that besides it being so much easier for you to just cook gluten-free for everybody, and not having the problem of cross contamination in the house. If your husband wants to eat gluten, he can do it outside the house.

Since celiac disease is genetic, it would make a whole lot of sense if your first doctor was right, and your pd is wrong. Why put the kids through more blood work, when the diet is the best test for young children anyway. The tests are highly unreliable in little kids.

Guest nini
Guest nini
Posted

my daughter's test result was negative, mine was positive, yet we both responded very well to the diet. my daughter's symptoms were the same as mine when I was a small child... testing in children is unreliable, if it's positive IT'S POSITIVE, but if it's negative, it only means not positive right now... dietary response is the best indicator. My daughter is 6 and adheres to the diet with no problems. It's all how you approach it. I think you should go with prevention over waiting for confirmed damage since it is genetic and just take all the girls off gluten. It will be less confusing on you that way. And if you want suggestions on how to do the diet on a small budget, there are threads on here already on that subject.

chrissy Collaborator
chrissy
Posted

they obviously aren't up to date on testing or they would have done a total IgA serum to begin with. if the only test that was high was the AGA IGA----then that could explain why one doctor would say positive and another doctor would say negative. do you know which tests they ran?

happygirl Collaborator
happygirl
Posted

My best advice:

Get the results, hard copy (not someone reading them over the phone), and post them on here, word for word. The doctor's office has to get them to you. Call them, tell them what you want, and that you are coming up there to pick them up. :)

We'll help you out!

Laura

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