Ttg Test

[Annie4439]

Hello Everyone,

I'm hoping someone out there can give me some advice. When I was diagnosed with celiac disease 4 months ago, my TTG level was 176. I was recently re-tested and it went down to 36. I thought that was good, but my doctor said she thinks that is still too high.

I have been extremely careful about eating only gluten-free foods. I have checked all my vitamins, lotions, makeup, and shampoos as well. I have even purchased new cookware. I know of only one time in 4 months I accidentally ate two potato chips that had gluten. I have rarely gone out to eat, but know what I ordered was gluten free. I guess there is always the possibility of cross contamination, but as I said, it was only a few times.

How long does it take to have normal TTG levels? Should my levels be normal by now? What am I doing wrong?

Thanks!

[cassP]

oh, i have no idea how long it takes for them to go down, hopefully someone can better answer that for u.

36 is still high- and you'll want to get them even lower into the "negative" range of course... but from where you came from- it looks like you're doing something right!

hope they continue to go down!

u might want to limit your dairy & eat a low grain diet maybe... also limit your gluten free substitutes (breads, dessert, etc).. if you're not healed yet- these could be aggravating you. also take your probiotics and be careful you dont have any candida- ive read that Candida can trigger some of those reactions in the small intestine because it's structure is similar to gluten or Wheat Germ Agglutin

[mamaw]

wow, you are doing well with your level dropping that much in four months, some people it takes a year or better to get those results. Kudos to you. But yes, your level needs to get much lower, under five is good.. Keep up the great work.....

[Kim27]

Don't let the doc discourage you, you're doing great! It will continue to drop if u keep it up! In 4 months it shouldn't be expected to be normal yet. I started at 168, then 65 five weeks later, then 23 4 months later. Going for another test soon, expecting it will have dropped below 20 (normal) after 4 more months. It takes time. Keep it up!

[Annie4439]

Thanks for the information. One more question....you mention avoiding dairy and other things while I heal. If I eat something that aggravates my stomach, but it isn't gluten, can that affect my TTG level? I thought only gluten could do that.

Dairy bothered me at first, but I've been gradually adding it back in. Same thing with spicy foods. Can these things cause my level to elevate?

Thanks!

[sa1937]

I'm asking myself the same question. A year ago my tTG IGA was > 100. (< 5 negative, 5 - 8 equivocal and > 8 positive). In early Jan. after being gluten-free for 9 months, I'm still at 10. Obviously the reading has come down significantly but I'm bummed that it's still not in the negative range. Of course, I have no idea how high that number really was a year ago since the lab only indicated that it was over 100.

My endomysial antibodies were positive a year ago and negative now.

I have a follow-up appt. with my GI doc in early April but don't know if he'll be able to shed any more light on it or not. I'm really curious to know what's normal (whatever that word means) or if I'm expecting too much too soon. 'Tis such a puzzle.

[quincy]

My TTG was 51 in April 10. My last reading as of Dec 2nd was a 4. So it sounds like going from 171 to 34 is quite good in 4 mos. It takes time for the numbers to go down but if you are very strict about gluten it will come down to negative soon.

dairy does not affect the ttg number, its just that dairy is not digestible if you have villi damage, which most likely you do. stay off dairy for a good while, and then start with lactaid in tea or coffee and see how you do.