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okanagansummer
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okanagansummer Newbie
okanagansummer
Posted
(edited)

Hello 

I’m wondering if someone might be able to relate ... we just received test results back that our daughters ttg antibody level was 37, and her iron is low.  Our dr said we could look at further testing (scope and biopsy) or continue on as gluten free...I’m just wondering if that is what most people do? 
He didn’t say definitively she was celiac, a biopsy would have to performed for that. Has anyone had a biopsy and then it turned out the be negative? What does that ttg level mean?

Edited by okanagansummer
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Scott Adams Grand Master
Scott Adams
Posted

If your daughter has been gluten-free the biopsy and future blood test will likely be false negative now. You should follow the doctor’s recommendation, but read this and perhaps share it with the doc: 

 

cyclinglady Grand Master
cyclinglady
Posted

I am assuming the TTG result was still above the normal range despite your daughter being on a gluten free diet.  How long has she been gluten free?  It can take up to a year or longer for TTG levels to normalize.  Why?  Many reasons, but the main one is mastering the gluten free diet.  Expect to make mistakes.  It takes time to really get the diet down.  

Anemia (many different types) can resolve once healed and she is absorbing nutrients.  It took me about four months for my anemia to resolve but I had the advantage of really knowing the diet because my hubby had been gluten free 12 years before my diagnosis.  

Scott is right.  Your doctor may think it is necessary to confirm with a biopsy, but with COVID-19, I would think standards would be changed (that and some of the newer evidence he shared).  

My own kid has tested negative a few times.  She came home from university because of this pandemic.  She is not feeling well.  We suspect celiac disease may have been triggered, so she is gluten free and is feeling much better in just two weeks.  Is it celiac disease?  Who knows? But feeling good while she is continuing  her studies at home is important.  We will worry about a formal diagnosis later.  But that is our family.  You need to figure out what is best for your daughter.  

If your daughter remains gluten free, stick with real gluten-free food.  Avoid processed junk food (as much as you can with a kid).  At least until you see some improvement.  

I hope this helps.  

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