Celiac Testing. Ttg Tests Not The Most Accurate To Detect Early Stage celiac disease

[answerseeker]

Here's an interesting article. Only 64% accuracy with the ttg test in early stage celiac. Kaiser doesn't do the whole panel. It's so important to get the celiac panel because you can see in this article the accuracy goes up pretty significantly with the ema tests. This refers to early stage celiac with little or no villi damage (marsh I)

www.ncbi.nlm.nih.gov/m/pubmed/21063208/

My insurance changes in Jan, no more Kaiser. I'm getting my children retested with the whole celiac panel

[nvsmom]

Interesting. The EMA IgA's ability to detect early celiac disease surprised me. It usually doesn't show up until there is already damage (from tTG IgA) and then it tries to wipe out the top damage layer of the villi... like a second wave of attack.  At least that how I understood it.

[answerseeker]

I think they are always learning new things about this disease! I don't think there is enough research yet in early stage celiac. But it does seem to me that the ttg has a high false negative. My kids tested almost the same exact numbers on the ttg as I did and as each other did which is odd to me. My ttg was false negative. I thought it was due to prednisone but this makes me wonder. Regardless, they are getting a whole celiac panel done the minute our insurance changes!

[NoGlutenCooties]

I can't put my finger on where I read this but I remember seeing that a negative bloodtest is only about 70% accurate.  However, a positive bloodtest is about 97% accurate.  Also, it is important to get the actual numbers from the doctor (which it sounds like you did) rather than just the "positive" or "negative".  There are discrepancies in what different labs and different doctors consider "positive".  For example, my doctor doesn't consider it to be a positive result unless the number is over 11.  But most nutritionalists will tell you that anything over 3 is positive - just not "positive enough" for the insurance companies to want to pay for the endoscopy.  In this case you'd have to get tested annually and see if the number goes up.

[nvsmom]

The numbers that I usually quote are from the Open Original Shared Link On page 12 it shows that the tTG IgA's sensitivity (how many cases of celiac disease out of 100 it would catch) is 75-95% - meaning it misses 5-25% of celiac disease with false negatives- and the specificity (how many cases of 100 positives are actually celiac disease) is 91-99% - meaning 1-9% of all positive tests are false positives for celiac disease and probably attributed to something else like crohn's, colitis, diabetes, thyroiditis, liver disease, or some other infection.

 

False negatives are definitely more common than false positives.

 

I'm glad you have a doctor who will interpret the grey areas, NoGlutenCooties. Most doctors won't, there is just positive or negative nevermind that the numbers seperating them may be next to nothing.

[NoGlutenCooties]

I'm glad you have a doctor who will interpret the grey areas, NoGlutenCooties. Most doctors won't, there is just positive or negative nevermind that the numbers seperating them may be next to nothing.

 

I actually insist on getting the specific numbers from the doctor, to include a copy of the test results, and do my own independent research.  I don't trust doctors to explain - or even to really know - what the grey areas mean.