Feeling Defeated....

[massagemamaof3]

My daughter had her first 6 months blood work done the other day and I got the results back yesterday. Her TTG levels are 119. We have a gluten free house and she has gluten free lunch at school. I'm feeling so defeated right now and I have no idea where to start looking for the areas she's getting glutened at. Anyone out there have this same thing happen?

[kareng]

Did it go down?  Six months may not be enough time for it to get to "normal".  

 

I would look at the school as the most likely cause of gluten.  Are you sending a lunch or do they claim they can make her a gluten-free one?  What about eating other people's food?  Not sure of her age, if she is old enough, is she getting non gluten-free food at friends' or going out?

 

I would just re-check the foods at your house.  Sometimes people don't realize something that seems gluten-free contains gluten.  

[massagemamaof3]

She's 12 and is really cautious about what she eats she ate a "gluten free" brownie a few months back and had such bad stomach cramps for 18 hours that she's even more careful. I also make sure that she uses gluten-free shampoo, conditioner, body wash, and toothpaste. Her lunch at school is a pre-packaged gluten-free lunch. She will be taking her own lunch starting next week. I called her other dr to see what the beginning number was and it only said it was greater then 100 but not a specific number. I'm hoping that it just started out really really high.

[kareng]

She's 12 and is really cautious about what she eats she ate a "gluten free" brownie a few months back and had such bad stomach cramps for 18 hours that she's even more careful. I also make sure that she uses gluten-free shampoo, conditioner, body wash, and toothpaste. Her lunch at school is a pre-packaged gluten-free lunch. She will be taking her own lunch starting next week. I called her other dr to see what the beginning number was and it only said it was greater then 100 but not a specific number. I'm hoping that it just started out really really high.

 

 

Maybe it has gone down a lot, but you can't tell.

 

I know you think she is really cautious but she is a 12 year old girl.  I think I would have a little chat about the possible damage she might do to herself if she cheats.  No need to accuse her, just a friendly mom reminder  - brittle bones, no growth, late puberty, etc.

 

One thing some kids do - IF I can eat it at home, its OK at another home.  For instance, kids eat rice Krispy treats at home made with gluten-free cereal.  They don't realize the ones at school or Suzy's house are made with non-gluten-free Krispies.  They just assume they are all the same.  

 

My son knows a kid with Celiac.  His mom says "He is really careful".  My son says he sees him eat all kinds of gluten stuff when mom isn't around.  

[StephanieL]

It took over 3 years to get down to "normal" and has jumped back up unfortunately It can take a while.  My DS's did come down at the 6 month mark but it wasn't anywhere near what I was hoping it would be.  I would start with only food from home for now. It takes away a lot of the questioning.  

[jcarroll]

My daughter was diagnosed with Celiac Disease 5 years ago and her levels are still not normal. She is absolutely positively not getting gluten. We charted her food intake for weeks and submitted to a nutritionist and everything looked fine. She even had another biopsy and her intestines look fantastic. Her TTG level was 266 when she was diagnosed and is now down to 33. So its going in the right direction. Two doctors told me it just takes longer for some for their levels to come down.

[Cara in Boston]

Our 6th month check up was still positive but since it was lower than the original test our doctor was not at all concerned.  As long as it is going down.  If she wasn't gluten free it wouldn't be going down and the symptoms would not be gone.  I'm sure you are doing a great job.

[massagemamaof3]

Thanks everyone. I feel reassured that things are going in the right direction. Since neither of the drs offices can seem to find her starting TTG number I'm just going to assume it's getting lower