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Confused About 6 Month Follow-up Ttg Iga Test

Grace Maureen

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Grace Maureen Rookie
Grace Maureen
Posted

I was diagnosed with Celiac Sprue in late August of 2008 (via blood tests and endoscopy). My diagnostic TTG IgA test was leveled at 157. I was just retested and now my level is 65. So, my doctor told me that I must be doing a good job with my gluten-free diet as my number has clearly dropped, but everything that i have read has said that it should be at a negative level....So...am I doing things right? Shouldn't my test be negative by now?

I am obssesive about my diet, I even use gluten-free soaps and makeups, etc... I have only eaten out twice since I started the diet in September. I guess my real concern is that one of my prescriptions may not really be gluten-free. That is the only thing that I can think of.

Or could it just be taking this long to drop down to normal?

Also, if one does have a set-back due to a cross-contamination, how long will their numbers typically show positive on a TTG IgA test?

Unfortunately, I am part of an HMO, and my doctor admits that neither she nor any of her colleagues are very experienced with celiac, so I have been telling her what tests to order and what needs to be done...so, her telling me that I must be doing well with my diet, isn't a very reliable opinion.

Any opinions or help would be sooooooooooo appreciated.

Thank you!

PS Why can't our doctors just know more about celiac? argh

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Tallforagirl Rookie
Tallforagirl
Posted
My diagnostic TTG IgA test was leveled at 157. I was just retested and now my level is 65. So, my doctor told me that I must be doing a good job with my gluten-free diet as my number has clearly dropped, but everything that i have read has said that it should be at a negative level....So...am I doing things right? Shouldn't my test be negative by now...

Or could it just be taking this long to drop down to normal?

Also, if one does have a set-back due to a cross-contamination, how long will their numbers typically show positive on a TTG IgA test?

My tTG at diagnosis was >200, then after four months it was 132. My doctor said it can take a long while for tTG levels to normalise, and everything I've read supports this.

Antigliadin IGA levels are far more reactive, and will rise and fall more quickly with exposure to gluten, so if you're worried you could ask for your antigliadin tests to be redone and compare those.

"IgA gliadin antibodies increase rapidly in response to gluten in the diet and decrease rapidly when gluten is absent from the diet. The IgA anti-gliadin antibodies can totally disappear in 2-6 months on a gluten free diet, so they are useful as a diet control."

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

I'm due for a six-month review very soon, so I think I'll ask for antigliadin IGA to be done as well as tTG.

Bookie53463 Rookie
Bookie53463
Posted
I was diagnosed with Celiac Sprue in late August of 2008 (via blood tests and endoscopy). My diagnostic TTG IgA test was leveled at 157. I was just retested and now my level is 65. So, my doctor told me that I must be doing a good job with my gluten-free diet as my number has clearly dropped, but everything that i have read has said that it should be at a negative level....So...am I doing things right? Shouldn't my test be negative by now?

I am obssesive about my diet, I even use gluten-free soaps and makeups, etc... I have only eaten out twice since I started the diet in September. I guess my real concern is that one of my prescriptions may not really be gluten-free. That is the only thing that I can think of.

Or could it just be taking this long to drop down to normal?

Also, if one does have a set-back due to a cross-contamination, how long will their numbers typically show positive on a TTG IgA test?

Unfortunately, I am part of an HMO, and my doctor admits that neither she nor any of her colleagues are very experienced with celiac, so I have been telling her what tests to order and what needs to be done...so, her telling me that I must be doing well with my diet, isn't a very reliable opinion.

Any opinions or help would be sooooooooooo appreciated.

Thank you!

PS Why can't our doctors just know more about celiac? argh

I'm just curious as to your symptoms -- I had a similar tTG result (180 or so) prior to starting a gluten-free diet.

Did your symptoms go away even though your blood test is still "high"?

What symptoms do you have?

After about a year on the diet, I got down to a 60 or 70 (at the same lab/method/test kit/etc.) though my symptoms (mainly pretty constant distension and bloating never went away, i.e. right now I'm 6'2'' and 170 lbs with low body fat of around 11-12% though I have to wear 36 inch pants to only mostly be comfortable and look reasonable whereas most people with my stats wear a 32 comfortably) never changed.

At that point, potentially prematurely, I stopped the gluten-free diet and eat whatever I want though I keep my gluten intake pretty low (my tTG is back over 100 now). I feel miserable and want to change something to hopefully improve my situation.

Re: "Why can't our doctors just know more about celiac? argh" --> because most GI's are idiots since it's a relatively "soft" specialty in terms of interpretation of images and the relatively low litigation risk

and besides, with celiac, there isn't an army of drug reps giving seminars, free lunches, and pushing drugs on GI's to give them to celiac patients

Grace Maureen Rookie
Grace Maureen
Posted
  • Author

My symptoms before going on the gluten-free diet were random and many constant extreme exhaustion, REALLY REALLY low energy, depression (probably because I didn't have enough energy to live a normal active lifestyle), headaches, constipation, GERD, anxiety. Post diet includes kind of exhausted, kind of low energy, some headaches, some constipation....you probably get my drift=) So, no, things are not peachy keen but they definitely are peachier.

As for keeping your gluten intake pretty low...if you have a diagnosis of celiac, then to have any gluten seems like a bad idea. I understand how hard it is. My sister was diagnosed the same time I was and has given up on the diet completely. She just couldn't handle it. My motivation to keep going is seeing the complications that my mom has had to deal with after being diagnosed many many years after her celiac was triggered. Good luck to you. And thank you for your response=)

I'm just curious as to your symptoms -- I had a similar tTG result (180 or so) prior to starting a gluten-free diet.

Did your symptoms go away even though your blood test is still "high"?

What symptoms do you have?

After about a year on the diet, I got down to a 60 or 70 (at the same lab/method/test kit/etc.) though my symptoms (mainly pretty constant distension and bloating never went away, i.e. right now I'm 6'2'' and 170 lbs with low body fat of around 11-12% though I have to wear 36 inch pants to only mostly be comfortable and look reasonable whereas most people with my stats wear a 32 comfortably) never changed.

At that point, potentially prematurely, I stopped the gluten-free diet and eat whatever I want though I keep my gluten intake pretty low (my tTG is back over 100 now). I feel miserable and want to change something to hopefully improve my situation.

Re: "Why can't our doctors just know more about celiac? argh" --> because most GI's are idiots since it's a relatively "soft" specialty in terms of interpretation of images and the relatively low litigation risk

and besides, with celiac, there isn't an army of drug reps giving seminars, free lunches, and pushing drugs on GI's to give them to celiac patients

Grace Maureen Rookie
Grace Maureen
Posted
  • Author

Thank you for your response. I guess I was confused by the names of the tests? So, tTG IgA is not the same as IgA? This is so confusing. Maybe I can get her to prescribe me the other test so that I can feel more confident in my progress.

I have just been working so hard and if I am making mistakes I don't want to wait another 6 months to find out. Esepcially when you conisder all the things we give up to follow this rediculous regime. It's not even that I miss the food, it's the social life and my old personality. Now I have to be so "on" everywhere I go that isn't a gluten-free environment, friends and families houses, vacations (which I am to scared to go anywhere longer than a weekend), the lunch room, my shared office space at work.... sorry for that vent.

But really, thank you I really appreciate the article. I will read it tonight.

Thanks

My tTG at diagnosis was >200, then after four months it was 132. My doctor said it can take a long while for tTG levels to normalise, and everything I've read supports this.

Antigliadin IGA levels are far more reactive, and will rise and fall more quickly with exposure to gluten, so if you're worried you could ask for your antigliadin tests to be redone and compare those.

"IgA gliadin antibodies increase rapidly in response to gluten in the diet and decrease rapidly when gluten is absent from the diet. The IgA anti-gliadin antibodies can totally disappear in 2-6 months on a gluten free diet, so they are useful as a diet control."

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

I'm due for a six-month review very soon, so I think I'll ask for antigliadin IGA to be done as well as tTG.

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