How often do you test antibiodies?

[yuluyouyue]

Hello, I have a question for those who have been diagnosed a while/years ago. 

How often do you check your blood for antibiodies ttg iga to make sure celiac is not active? And if you check them often enough, like once a year, do they fluctuate? Are they higher if you have been contaminated recently? 

I check mine once a year. So far so good but I am always a bit nervous before I get the results. 

Thanks!

[RMJ]

I usually check my TTG and DGP once a year.  Once my antibody levels got down into the normal range, I’ve only had one time when the DGP IgA went back up to positive.  After that I requested a test after 6 months to see if my dietary changes were working. I’ve had trouble with nausea recently so I asked my doctor to check sooner (and the results are all fine).

[yuluyouyue]

  On 9/27/2022 at 5:54 PM, RMJ said:

I usually check my TTG and DGP once a year.  Once my antibody levels got down into the normal range, I’ve only had one time when the DGP IgA went back up to positive.  After that I requested a test after 6 months to see if my dietary changes were working. I’ve had trouble with nausea recently so I asked my doctor to check sooner (and the results are all fine).

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Thanks for replying. I never tested dpg. Is ttg not enough? 

[RMJ]

For me, my DGP IgA took longer to normalize than the TTG IgA, and went up once when gluten contamination snuck into my diet and the TTG stayed normal.

[yuluyouyue]

  On 9/27/2022 at 10:45 PM, RMJ said:

For me, my DGP IgA took longer to normalize than the TTG IgA, and went up once when gluten contamination snuck into my diet and the TTG stayed normal.

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I see. I did some research and it seems dgp is a newer test, and while ttg is rather cheaply available in most private labs in my country, dgp is not. I will try to ask my doctor next time. I hope only negative ttg still means I am doing well. 😥

[Kate333]

I was diagnosed in late 2019.  At the time my first TTG/IgA test, the number was 224 (at its highest).  After 2 years on STRICT gluten-free diet, the numbers finally reached normal range in May 2022 (13).  The last TTG reading was even lower normal (around 3), so I am celebrating, and hoping the TTG stays normal as I continue to maintain a STRICT gluten-free diet.  Re:  DGP/IgA level, it has always tested in the normal range, so that doesn't really worry me.

Over the past 2 years, as I worked on adapting to the gluten-free diet habits and getting the blood test numbers back to normal, I asked my doc to test me every 3-4 months to assess my progress and because I was so scared, wanted to make sure I was on track and numbers were declining.   

Now that I have been in the normal range for half a year while still being super careful to avoid any and all G and CC, I plan to relax a bit about testing, ask for it only once a year, unless the doc recommends otherwise.    I don't think I have been even accidentally contaminated because I have refrained from eating out at restaurants or other people's homes since March 2020--primarily due to Covid, but also due to lingering "newbie" fear of G exposure.  Since diagnosis, I have also sticked to eating exclusively fresh, natural foods, avoided ALL processed/packaged food, even those with touted "gluten-free" labels because I hate spending so much time reading labels and wondering/worrying about their accuracy.  Also, I think it too risky to rely on food manufacturers assurances alone, especially since their products are not really subject to rigorous oversight or testing, at least not here in the USA.

[Rogol72]

  On 9/28/2022 at 2:25 AM, Kate333 said:

I was diagnosed in late 2019.  At the time my first TTG/IgA test, the number was 224 (at its highest).  After 2 years on STRICT gluten-free diet, the numbers finally reached normal range in May 2022 (13).  The last TTG reading was even lower normal (around 3), so I am celebrating, and hoping the TTG stays normal as I continue to maintain a STRICT gluten-free diet.  Re:  DGP/IgA level, it has always tested in the normal range, so that doesn't really worry me.

Over the past 2 years, as I worked on adapting to the gluten-free diet habits and getting the blood test numbers back to normal, I asked my doc to test me every 3-4 months to assess my progress and because I was so scared, wanted to make sure I was on track and numbers were declining.   

Now that I have been in the normal range for half a year while still being super careful to avoid any and all G and CC, I plan to relax a bit about testing, ask for it only once a year, unless the doc recommends otherwise.    I don't think I have been even accidentally contaminated because I have refrained from eating out at restaurants or other people's homes since March 2020--primarily due to Covid, but also due to lingering "newbie" fear of G exposure.  Since diagnosis, I have also sticked to eating exclusively fresh, natural foods, avoided ALL processed/packaged food, even those with touted "gluten-free" labels because I hate spending so much time reading labels and wondering/worrying about their accuracy.  Also, I think it too risky to rely on food manufacturers assurances alone, especially since their products are not really subject to rigorous oversight or testing, at least not here in the USA.

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That's really impressive. Well done!! My TTG levels last year were at 3.1, though I'm not sure what my IGA levels are. Time to get it checked again.

[yuluyouyue]

  On 9/28/2022 at 2:25 AM, Kate333 said:

I was diagnosed in late 2019.  At the time my first TTG/IgA test, the number was 224 (at its highest).  After 2 years on STRICT gluten-free diet, the numbers finally reached normal range in May 2022 (13).  The last TTG reading was even lower normal (around 3), so I am celebrating, and hoping the TTG stays normal as I continue to maintain a STRICT gluten-free diet.  Re:  DGP/IgA level, it has always tested in the normal range, so that doesn't really worry me.

Over the past 2 years, as I worked on adapting to the gluten-free diet habits and getting the blood test numbers back to normal, I asked my doc to test me every 3-4 months to assess my progress and because I was so scared, wanted to make sure I was on track and numbers were declining.   

Now that I have been in the normal range for half a year while still being super careful to avoid any and all G and CC, I plan to relax a bit about testing, ask for it only once a year, unless the doc recommends otherwise.    I don't think I have been even accidentally contaminated because I have refrained from eating out at restaurants or other people's homes since March 2020--primarily due to Covid, but also due to lingering "newbie" fear of G exposure.  Since diagnosis, I have also sticked to eating exclusively fresh, natural foods, avoided ALL processed/packaged food, even those with touted "gluten-free" labels because I hate spending so much time reading labels and wondering/worrying about their accuracy.  Also, I think it too risky to rely on food manufacturers assurances alone, especially since their products are not really subject to rigorous oversight or testing, at least not here in the USA.

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Thank you for replying. My antibiodies also normalized within a year and have stayed so for the following two. I am careful but not as you. I eat in normal restaurants when I travel, so a few times a year. I also eat suff that is gluten free, even if only declaration wise, such as snickers or bounty. I know it's not 100% safe but I feel fine and it doesnt seem to activate my antibiodies. I just can't live on alert 24/7 or just hang out in my flat. There are risks in everything we do anyway.