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Return To Normal = Celiac?

Thea-Bug

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Thea-Bug Newbie
Thea-Bug
Posted

Hi all,

Long time lurker, first post here :) I'm confused about my results & haven't heard back from my GI, who's usually slow about getting back - I just have a copy of the lab results in the mail. My TTG IGA was very high several months ago. I then went gluten-free. I didn't do the biopsy because I was undergoing another surgery at the time and decided not to (I realize the time has passed now that I'm gluten-free). I have been gluten-free now for a while. I had a repeat blood test last week and the TTG IGA is now completely normal (under 1 in fact!).

At my follow up, before the GI drew the blood, she said that my positive response to the gluten free diet, plus the TTG IGA, may indicate celiac. She said that the follow up blood test would confirm celiac for sure.

My question is this: does this make sense that the follow up blood test would confirm? I get that the false negative rate for the TTG IGA is very low, and is only for a few other conditions like autoimmune stuff and liver failure. So does the fact that it went down to practically zero over the course of several months mean for sure that it's celiac? That would make sense to me, because if it was something else in the first place (e.g. liver failure), a gluten-free diet shouldn't affect that number. But of course, then there's the fact that the biopsy is supposed to be the gold standard. So I guess that's where I'm confused. Isn't TTG IGA a measurement of ACTUAL REPAIR GOING ON TO THE INTESTINES in the first place? Right? Isn't that the body's immune response to damage in the intestines? Or do I have that wrong?

So confused right now! ;)

Thanks in advance!

Thea

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi all,

Long time lurker, first post here :) I'm confused about my results & haven't heard back from my GI, who's usually slow about getting back - I just have a copy of the lab results in the mail. My TTG IGA was very high several months ago. I then went gluten-free. I didn't do the biopsy because I was undergoing another surgery at the time and decided not to (I realize the time has passed now that I'm gluten-free). I have been gluten-free now for a while. I had a repeat blood test last week and the TTG IGA is now completely normal (under 1 in fact!).

At my follow up, before the GI drew the blood, she said that my positive response to the gluten free diet, plus the TTG IGA, may indicate celiac. She said that the follow up blood test would confirm celiac for sure.

My question is this: does this make sense that the follow up blood test would confirm? I get that the false negative rate for the TTG IGA is very low, and is only for a few other conditions like autoimmune stuff and liver failure. So does the fact that it went down to practically zero over the course of several months mean for sure that it's celiac? That would make sense to me, because if it was something else in the first place (e.g. liver failure), a gluten-free diet shouldn't affect that number. But of course, then there's the fact that the biopsy is supposed to be the gold standard. So I guess that's where I'm confused. Isn't TTG IGA a measurement of ACTUAL REPAIR GOING ON TO THE INTESTINES in the first place? Right? Isn't that the body's immune response to damage in the intestines? Or do I have that wrong?

So confused right now! ;)

Thanks in advance!

Thea

The tTG test is the antibody that indicates that your body is making toxic molecules from gluten that damage your villi. It is a measure of the how badly your body is DAMAGING your intestines. So, the fact that it has returned to normal after a gluten free diet is a pretty good indicator that you have Celiac. If it was elevated because of another issue (Crohn's disease, liver disease, etc.) then it would not have gone down.

I would say you don't need a biopsy for a dx. I think the blood work and your response to gluten-free diet are good enough. If it's really important to you to have positive biopsy results, then you will have to go on a gluten challenge for 3 months and torture yourself for a confirmation , but even then the "Gold Standard" biopsy can be falsly negative.

My 2 cents.....in lieu of a biopsy, why not see if the GI doc can order genetic tests to see if you have the genes for Celiac? If you are negative for the genes, it is impossible for you to have it. But if you are positive for the genes, then it's one more piece to the puzzle and the "nail in the coffin", given all the other evidence.

Welcome to the group! Sorry you are here, but glad you are here! :D

ravenwoodglass Mentor
ravenwoodglass
Posted

Yes if your blood test was positive and you got relief on the diet and then after that those numbers went down to normal levels you are one of us.

Personally I wouldn't use gene testing as a for sure one way or the other that you are celiac. There is much that we don't know yet about genes and there are many more celiac associated genes than are usually tested for.

Consider yourself diagnosed and keep up the good work with the diet.

Thea-Bug Newbie
Thea-Bug
Posted
  • Author

Thanks guys!

I also forgot to ask earlier: could my situation just be gluten sensitivity (I realize the distinction doesn't really matter but I just want to know)? I've read conflicting things on this board - some say TTG IGA only shows up with celiac (if it's showing up related to gluten issues - that is, excluding the other reasons a TTG IGA test could be positive), and others say TTG IGA shows up with celiac AND gluten sensitivity.... ???

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks guys!

I also forgot to ask earlier: could my situation just be gluten sensitivity (I realize the distinction doesn't really matter but I just want to know)? I've read conflicting things on this board - some say TTG IGA only shows up with celiac (if it's showing up related to gluten issues - that is, excluding the other reasons a TTG IGA test could be positive), and others say TTG IGA shows up with celiac AND gluten sensitivity.... ???

Whether it is celiac or "just" gluten sensitivity really doesn't matter. Just as much damage is done with each and the need to be strictly gluten free is the same no matter what label you put on it. It is a misconception IMHO that gluten sensitivity is less serious.

Thea-Bug Newbie
Thea-Bug
Posted
  • Author

Yes--just curious if TTG returning to normal was ONLY a sign of celiac, because even though I realize that gluten sensitivity and celiac really aren't different in terms of the treatment, I wonder with how to approach getting my kids tested.

Does anyone know if levels returning to normal always means celiac (as opposed to gluten sensitivity)? I've heard conflicting things.

THanks!

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