And The Mystery Continues....more Tests

[sickoftummyaches]

So, after 4 years of sx of IBS (C mainly, but increasing D), depression, FATIGUE, I finally went to a GI doc. She said IBS, but let's rule out celiac disease...Ok, fine.

So, I do bacterial overgrowth breath test, negative. IgA comes back that I am IgA deficient, so basically that test is useless, so we do a small intestine biopsy as she mentioned being IgA deficient is more common in Celiacs, so we can rule out celiac disease by biopsy, ok, I get that.

So, she called me today with my biopsy results which showed NO atrophy, BUT I had inflammation present (lymphocytes I guess). The pathologist wrote on the report, that the inflammation MAY suggest mild-moderate celiac disease. BUt GI doc doesn't want me to do a gluten free diet if she can't FOR SURE dx it.

So, next I have to go get blood drawn to test for the genetic markers of celiac disease, I guess. I don't know much about that part of it. She told me it takes a week or so to get those results. Only one lab around my area does it, then ships it off to California I guess, so I hope to get that done tomorrow.

Anyone had this hard of a time getting an answer? Do people with celiac disease have the high lymphocytes without atrophy?

[Skylark]

Has your doctor ordered the IgG versions of the celiac panel? That's the standard of care for IgA deficient folks.

If your biopsy mentioned increased intestinal intraepithelial lymphocytes (IELs), that is Marsh 1. As your doctor says, it suggests mild to moderate celiac disease. Those are the cells that are doing the autoimmune damage. It just hasn't gotten bad enough to cause villous atrophy...yet.

Once the IgG panel is done, I would STRONGLY suggest you go off gluten no matter what the genetic test says. There are some celiacs without the common genetic markers so the test CAN NOT rule out celiac. If you feel better off gluten with a Marsh 1 biopsy, it's reasonable to say you have early celiac disease. The biopsy may be the only sign of celiac you get (besides the blindingly obvious symptoms), so don't let your Dr. play games with your health because she is unwilling to label you!

[sickoftummyaches]

Thank you for answering, much appreciated!!

I am not sure about the IgG? I suppose I need to find out if that was done?

And I've heard of Marsh 1, but I need to research that. I'm going to try gluten-free, I completely agree with you.

[Skylark]

Thank you for answering, much appreciated!!

I am not sure about the IgG? I suppose I need to find out if that was done?

And I've heard of Marsh 1, but I need to research that. I'm going to try gluten-free, I completely agree with you.

I sure would find out about the IgG. There are IgG versions of all the celiac tests, anti-EMA, anti-TTG, anti-gliadin, and DGP

I hope you get things sorted out.