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Andrews40

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Andrews40 Newbie
Andrews40
Posted

Hello, I am new to all of this.  My daughter has been struggling with symptoms for quite a while.  She has been suffering from vomiting for about 6 months now!  We finally were able to get the IGG, IGA, and TTG drawn.  IGG was 62, IGA was 32 (I believe, it may have been the other way around, I don't have the copy in hand) but her TTG came back at 868.1.... So to me that is SCREAMING positive and VERY HIGH.  The dietitian I work with, said the highest she has seen it was 120's.  Has anyone had experience with this?  Are there any MDs or NPs on here that would be able to explain it a little better?  We can't get into a GI specialist for 6 weeks!!!  I am also having trouble getting her dad to believe and understand this is truly a condition we have to prepare for.  He says she doesn't have symptoms at his house so he will not be changing anything! So that will be a huge challenge.  If anyone has any tips or ideas how to do gluten free in split families?  I plan to go gluten free with her, so it wont be any problem at my house- which she is only at her dads every other weekend, so it isn't ALOT, but it still needs to be followed at his house.  Has anyone had their TTG that high?  Any help would be greatly appreciated.

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cyclinglady Grand Master
cyclinglady
Posted

Celiac antibodies can be that high.  We just had a poster on here today!  My lab only goes to 200, so mine might have been as high as your daughters.   What is known is that antibodies do not always correlate to severe intestinal damage.  Get the endoscopy.  Now, this is important......VERY important.....keep her on gluten until she has the endoscopy and you have the biopsy results in your hand!  Why?  This can help your  ex see the the need for her to maintain a gluten free diet.  If he refuses, you have ammunition to go back to court.  We are talking about a child’s health and welfare!  

Celiac disease is genetic.  Both parents, siblings, etc. should be tested.  Do not go gluten free until you have been tested.  

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