Interpreting Test Results For 2 Yr Old Dd

[sashabetty]

My 2 yr old DD was gluten-free for 9 mos, now we are pursuing testing. She had gluten for about 3 weeks (I know, not very long...) and then had tests, her IGA came back at 14, which the Dr said was the absolute bottom of the normal range. And her TTG came back normal, I didn't get a number. So either she is not Celiac or the low IGA makes the TTG look normal, is that right? Plus it may be too soon to tell?

We are still waiting on the genetic tests. Meanwhile, my DD has been having several screaming tantrums, very unusual, but she is 2 so it's hard to know, and sometimes her belly looks pretty bloated (pregnant looking) but it's hard to tell for sure. So I guess we continue gluten and run through more test again later.

Anyone have feeback on the results? Am I understanding them? My husband talked to the Dr.

[CarolynM]

I agree with your statement about not long consuming gluten again. Also, I've heard different things about how much gluten needs to be consumed prior to testing. Despite test results, I think follow what you see works. Maybe all symptoms were not gone while she was gluten-free, then you decided on tests? Did she originally have other symptoms?

[sashabetty]

At 14 months she had the runs for more than 3 weeks, then stinky dark watery stool for 3 months, sometimes looking undigested and mucousy. She was also losing weight and lethargic, laying around sucking her thumb a lot. When we tried going gluten-free she had an immediate change in stool, and her weight has gone up along with her energy level.

So now we wait for the genetic tests which will be about 1 1/2 weeks.

And if that comes back positive the dr will want to do an endoscopy, but I have concerns about making sure that she consumes gluten long enough for that to be accurate.

Everyone asks about symptoms since consuming gluten, and all I can say is that it is hard to tell. I expected her to get more obviously sick. Her stool has been sometimes formed sometimes not, maybe a little constipated sometimes. The main thing are that she seems more clingy, wants to be held and putting her head in my lap a lot, and really hysterical tantrums (during which she extends her arms to be picked up then starts hitting at me when I get near her), and generally hitting a lot more. Everyone say, well, that's normal at age 2, but it's not typical for her, and it all coincides with gluten consumption. And even with being exceptionally verbal, I really don't believe she can tell me how she really feels in words. But overall she is doing ok still.

[CarolynM]

My guess is the runs will return. The behavioral changes may just be the first signs.

My daughter lost her hair after 3 solid weeks of no solid movements early last winter. She is very moody, has screaming fits like she doesn't know how to stop. I know she is 2 (nearly 3 now) but it is not normal. She also doesn't sleep well. Her Antigliadin levels were high in bloodwork but no Ttg. We went through with the biopsy for our dd; only to be told all is normal. I hoped the doc was right, went back to a normal diet (we had not gone gluten-free but cut way back) Now after 2 weeks of all loose stools, despite what the doctor says, we went gluten-free a few days ago.

In retrospect, if I had done the gene test and she had the gene and I had seen improvement on the diet; I would not bother with the biopsy.