Interpretation help

[Jenna83]

Hello, I'm hoping someone can help clarify my results.  I had the celiac panel blood tests in February through my general doc.  He said I had celiac and to get off gluten immediately.  I did, but in reviewing my blood work I only tested posted on 1 of the 4 tests (deamidated gliadin peptide IgA) so I wanted a specialist.  But by the time I saw him, I had been off gluten for 8 weeks.  He wanted to do a biopsy but I convinced him not too.  He said he was pretty sure I had celiac based on my numbers and to be strict with my diet.  I have been meticulous about being gluten free but when I went for my follow up a couple of weeks ago, my DPG IgA was still very high (original number was 111, and this time it was 90.9).  The doc did the biopsy last week and found that all tests came back normal.  He said my case is not clear, either I have celiac and my intestine has healed in 6 months or I never had it.   He will retest my blood in 6 months.  Can anyone help me understand?  I have done so much research and I'm just frustrated and confused.  Why would only my DPG IgA be extremely high when DPG IgG is normal and so are the other tests?  Thank you.

[ravenwoodglass]

Welcome to the board. You may have some gluten sneaking in that is keeping your antibodies active. If you are feeling better your antibdies may just be slow to come down.  Be sure to read the Newbie thread at the top of the Coping section for some good info..

Unless you did a gluten challenge chances are your biopsy was a false negative because you have been gluten free for 6 months. It is also possible that damage is spotty at this point and a damaged spot was missed.

[ironictruth]

DGP IGA is the only test I have tested positive to. In 18 months it has been positive 4 times, negative twice. Not as high as yours though.

I too was gluten-free for 8 months, did 6 weeks on gluten and a perfect biopsy.

Because I am DQ2 positive and have a sibling with celiac I went on a gluten-free diet again after biopsy.

Due to not having the gold standard biopsy, I still ate out and ate a lot of processed gluten-free stuff. All which I have learned still contains gluten and can "add up".

Now i have duodenitis ( but normal villi) and a positive DGP IGA after it was previously negative. These results were on a gluten-free diet so not accurate, but suggest exposure. 

So...if you go gluten-free, be ocd about it and just keep having your antibodies checked. If they are going down that is great! 

 

[cyclinglady]

I tested positive ONLY to the DGP IgA, like you except I had been on a gluten diet at the time of my endoscopy/biopsies which revealed a Marsh Stage IIIB.  My GI only orders the DGP IGA now to monitor progress as it is is the only that will be elevated (saves insurance money!). 

Raven is right.  Go by symptoms.  It can take years for antibodies to go down.  But.....if you are having symptoms (even little ones), you are probably getting exposure.  Do you eat out?  Eat lots of gluten-free processed foods?