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Ttg Levels

The Glutenator

By The Glutenator
in Coping with Celiac Disease

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The Glutenator Contributor
The Glutenator
Posted

Hello,

I really need some advice, please. I was diagnosed based on elevated Ttg levels (about 53) then a positive biopsy. After 1 year on a gluten-free diet (super diligent) my levels hadn't changed at all. My doctor had me go on a whole-foods diet, and for the past 6 months I have not eaten anything processed, not even gluten-free processed foods (cookies, pastas, etc) or naturally gluten-free processed foods. Now, my Ttg levels are still 44. I asked the doctor quickly on the phone if higher Ttg levels (my mom was diagnosed at over 100) means more damage, and he said no. Anything over 20 is positive, and anything over 30 means big trouble. I am going to see him again in a couple weeks, but what could be causing this? At this point, I figurwe I mind as well go back to a normal gluten-free diet, because the whole-foods thing was a ton of work and didn't make a difference anyway. Is it likely that I have some other auto-immune thing going on? I appreciate any and all input!

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sa1937 Community Regular
sa1937
Posted

I'm interested to see what he has to say, too. I started out with tTG over 100 and in Jan. at 9 months gluten-free, it was still 10 with anything over 8 being positive. I was pretty bummed thinking that the number would now be negative considering how careful I am. EMA, which was positive when tested, is now negative. So while significant progress has been made, something is amiss.

SaraKat Contributor
SaraKat
Posted

SA1937- even still at 10, that is a big improvement!

I had a positive TTG in Aug 2010 of >100, I just got retested 3 weeks ago and my level was 2.2 (anything over 4 was considered positive). I am wondering if there is something else going on- have you been tested for diabetes? I think I remember reading on here that a positive TTG could mean that also?

sa1937 Community Regular
sa1937
Posted

SA1937- even still at 10, that is a big improvement!

I had a positive TTG in Aug 2010 of >100, I just got retested 3 weeks ago and my level was 2.2 (anything over 4 was considered positive). I am wondering if there is something else going on- have you been tested for diabetes? I think I remember reading on here that a positive TTG could mean that also?

It is a big improvement...just not the total improvement that I was hoping for. Perhaps I was expecting too much too soon since the levels dropped dramatically and maybe age has something to do with it. I just don't know. When I saw my GI in early Jan., I was still having some issues, which have improved greatly since that time. I do have a follow-up in early April with him. I will have a lot of questions!

I haven't been tested for diabetes except that my glucose level was fine. Don't know what else might prevent tTG from falling to a negative level. My daughter is hypo-thyroid, as well as celiac, so I've wondered about that too but don't know if it would affect tTG levels. I've only had the TSH done, which was fine...I'm also wondering if I should have the complete thyroid panel.

The Glutenator Contributor
The Glutenator
Posted
  • Author

II am wondering if there is something else going on- have you been tested for diabetes? I think I remember reading on here that a positive TTG could mean that also?

That is what I am worried about now too. I have also heard that ttg can be elevated in liver diseases too. I am just 100% I haven't been having gluten...and I live alone so no chance of cc. This is so frustrating, and I would love some answers to all this. It is hard not knowing why your body is having an immuno-freak-out.

sa1937 Community Regular
sa1937
Posted

That is what I am worried about now too. I have also heard that ttg can be elevated in liver diseases too. I am just 100% I haven't been having gluten...and I live alone so no chance of cc. This is so frustrating, and I would love some answers to all this. It is hard not knowing why your body is having an immuno-freak-out.

You'll have your dr. appt. before me, so please post anything that he might suggest as to why your tTG level hasn't come down more...then I can ask my dr. in April. :unsure:

I know I might have a problem with CC as I haven't been just eating a whole foods diet. I know not all gluten-free flours, etc. are really gluten-free. I expressed concern that I might be getting hidden levels of gluten, which is why I had the follow-up lab tests. I also live alone so am not concerned about my own kitchen (replaced tons of kitchen equipment following my EGD since some I had was just plain ancient). I don't eat out, etc.

It's just difficult to live in a cave. lol

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