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So, my neuro had bloodwork done to check for Celiac. I think the labs ran weren't enough, but I'm not sure.

IgA Gliadin Deamidated 0.8

<7 negative

7-10 equivocal

> 10 positive

IgA Transglutaminase 0.4

<7 negative

7-10 equivocal

> 10 positive

That was it. Opinions please? Thanks!

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Your neuro ran the tests that most commonly detect celiac, but he did not run the full panel (few do) which is:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • AGA IgA and AGA IgG
  • total serum IgA

The first three tests will indicate there is ongoing villi damage (as is seen in celiacs), the EMA ia very similar to the tTG but detects more advanced damage - I do not remember seeing a positive EMA without a positive tTG IgA. The AGA indicates a sensitivity to gliadin and is thought by some to be a good test for both celiacs and non-celiac gluten sensitives (NCGS) although it is not the most sensitive test. Total serum IgA is a control test that is run to ensure that you produce adequate amounts of immunoglobulin A for the previous four tests to be accurate; about 5% of celiacs are deficient in IgA which is why it should be checked.

 

If you are going to ask for more tests, I would push for a total serum IgA to make sure your tests are accurate, and the DGP IgG, which is the most specific celiac test out there.  It is good to have a few IgG tests because some people's celiac only shows up serolgically with the IgG for some reason. You should have at least one IgG based test run.

 

This report discuses the various celiac disease tests on pages 11-12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

It is possible that you have NCGS. It has all the same horrible symptoms as celiac disease minus the villi damage, and is found in approximately one out of every twn people versus less than 1% for celiacs. Those with NCGS need to stay just as gluten-free or they will feel every bit as poorly as a celiac. Unfortunatley, the best way to diagnose NCGS is a gluten-free trial for many months as no dependable blood tests are available (some think AGA tests will show NCGS in some).

 

Best of luck with whatever you decide to do

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Thank you for all the information!

All of my celiac symptoms were triggered once I got pregnant. I have many neurological symptoms and many other various symptoms that match. My stomach symptoms aren't as bad. That was why I figured the labs would come back negative. I will likely just go gluten free and pray the majority of my symptoms (especially the neurological) will resolve in time.

Take care!

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It really is hard to figure out gluten sensitivities when the symptoms aren't GI related.  I had no idea that my migraines and arthralgias were being caused by grilled cheese sandwiches until gluten was gone from my diet. It really is a strange thing!

 

I hope you feel better on the gluten-free diet. Once you start it, make sure you give it a minimum of three months, six is better, because non GI symptoms can take a long time to improve. I was still having obvious improvements at 9 months. Patience is definitely needed.

 

Good luck.

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