Celiac - question about daughters test results (IGG)

[Shannie77]

A week ago I took my daughter (5) to the doctor for a check up and I mentioned the tummy aches she has been having.  He ended up ordering an IGG test and CBC.

Today I went back and the IGG test indicated Celiac?!  I saw  "positive * negative"  and the number 320.  Not sure what I was looking at.  The doctor now wants us to see a GI Specialist at Sick Kids, as well he asked us to go on a gluten-free diet.  He said the blood work is not conclusive for celiac.  She also had lowish iron levels.

A couple years ago our naturopath did and Ige/ iga (I think test) and it showed really high levels for gluten, wheat (along with other things like dairy).  We did gluten-free for a while to see if it would clear up her rashes.  We were never sure if it helped and ended up adding gluten back in without any obvious problems.

My DD has had tummy aches for years.  Recently she has gone from 37 to 35 pounds.  She is short 25%... my DH and I are both tall and come from tall families.  She isn't eating as well and is often feeling bad because of her tummy.  She has also started having light yellow BMs.

Anyways... I don't even find out when our appointment with the GI specialist is for another 2 weeks and they said it could be a very long wait (not sure what very long is though).  

In the mean time I was hoping for some thoughts/ insights from anyone else who has had a IGG test indicated celiac.

Thank you so much in advance!!

[scsigrl]

I have to run but DO NOT TAKE HER OFF GLUTEN till you get all the blood work and possibly a biopsy.  You can't know for sure if it's Celiac if she is not ON gluten when doing the tests. 

Will post more later but you MUST keep her ON gluten till all the testing is done!  

[Shannie77]

Now i am wondering if it was a TTG test, and I just saw the G assumed otherwise.

Out naturopath did an IGG test on her a couple years ago and she came back off the charts for gluten and wheat.  Without going in to details we took her off her low gluten diet we were doing at the time and didn't notice any change.  I just figured the test wasn't very accurate like most of my friends, family and pediatrician tried to tell me.

Any thoughts or advice would be most appreciated!  

[scsigrl]

Okay,  so I would be sure to keep her on gluten till you see the GI Dr.  They will run all the necessary blood work. If that is + they will most likely want to biopsy.  I was not keen on it but it was what we chose to do.  After an inconclusive result we did go GF and retested the blood work at 6 months out and his tTG did drop. Our Dr. was willing to dx Celiac based on that.  Not all Dr's will so you need to discuss that with them.

Really, until you get to the GI don't change anything is the major advice. I know it's hard but that's what you will need if you want a definitive dx.  Also, you may want to get the rest of the family tested as well since it is genetic.  

Hope that helps a little.  Keep us posted with what's going on as you work through this.  Know there are many of us who have gone down this road.