Ttg levels

[Chris-B]

So my ttg levels went from 83 back in January to 48 last Friday. I’m assuming this is a step in the right direction. What is the normal rate at which the antibodies decrease on a strict gluten free diet? Is this good? I do feel like there were a few instances in the past few months where I may have had cross contamination. So I’ve since gone paleo and eat only real foods. No grains and no dairy. No boxed garbage even if it’s gluten free. My abdominal pain has decreased a bit and my bowel movements are great again. I’m also feeling a lot better overall since going paleo. Have an endoscopy and colonoscopy coming up too. 

[cristiana]

3 hours ago, Chris_B said:

So my ttg levels went from 83 back in January to 48 last Friday. I’m assuming this is a step in the right direction. What is the normal rate at which the antibodies decrease on a strict gluten free diet? Is this good? I do feel like there were a few instances in the past few months where I may have had cross contamination. So I’ve since gone paleo and eat only real foods. No grains and no dairy. No boxed garbage even if it’s gluten free. My abdominal pain has decreased a bit and my bowel movements are great again. I’m also feeling a lot better overall since going paleo. Have an endoscopy and colonoscopy coming up too. 

Hi Chris

It think this varies from individual to individual ... I was diagnosed at around the same time as a couple of friends and one of them found their levels went down very fast.  Mine have taken a lot longer to settle.  They still aren't as low as I'd like them to be (currently 18ttg) and I've been on the diet for a very long time, but I share the house with gluten eaters, I've made a few mistakes etc - long story.   But as my consultant said to me the other day it's a downward trajectory and that's encouraging.   I'm going to now give up dairy for a while to see if that helps as it does appear to be that in a few coeliacs this may slow down healing to some extent.

I think you are doing really well, keep up the good work!

Cristiana

 

[Melissa93]

I wonder this as well. I got diagnosed in November with positive but not very high numbers, which according to the doctor was because I was low in IGA. Now they just did another test to check (so about 5-6 months from last blood work) and my celiac blood levels are good (like I would test negative). It feels like that's a really quick drop. I have an endoscopy in a month (didn't have one at diagnosis as my GI refused, but my new GI does want to do one).

[icelandgirl]

Hi Chris!

I think that's good progress!  It took about 18 months for my levels to get to normal.  I remember being tested at 6 months and they had come down, but were still above normal, but a year later they were perfect!  It sounds like you are doing the right things, keep up the good work!

[Scott Adams]

Everyone encounters a few bumps in the road during recovery, but it sounds like you've now figured the diet out. I think the hardest part, at least for me, is eating outside your home, which I still do. I'm careful, but just in case take AN-PEP enzymes before I eat anything outside my home.

[Melissa93]

14 minutes ago, Scott Adams said:

Everyone encounters a few bumps in the road during recovery, but it sounds like you've now figured the diet out. I think the hardest part, at least for me, is eating outside your home, which I still do. I'm careful, but just in case take AN-PEP enzymes before I eat anything outside my home.

Do those AN-PEP enzymes work well for you? I haven't really gotten into enzymes or idk specific supplements when you get glutened, but I usually travel a lot with work (not right now still). Quite anxious about food outside of the house.

[Kate333]

On 3/23/2021 at 7:34 AM, Chris_B said:

So my ttg levels went from 83 back in January to 48 last Friday. I’m assuming this is a step in the right direction. What is the normal rate at which the antibodies decrease on a strict gluten free diet? Is this good? I do feel like there were a few instances in the past few months where I may have had cross contamination. So I’ve since gone paleo and eat only real foods. No grains and no dairy. No boxed garbage even if it’s gluten free. My abdominal pain has decreased a bit and my bowel movements are great again. I’m also feeling a lot better overall since going paleo. Have an endoscopy and colonoscopy coming up too. 

Hi Chris.  You're DEFINITELY doing the right things!

I was diagnosed in late 2019 after TTG blood test.  My first (highest) TTG level at diagnosis was 224.  I adopted a strict gluten-free diet and eliminated ALL packaged foods (IMO you're right about that being "boxed garbage"--gluten-free-labeled or not).  Then I noticed the numbers rapidly fell about 50% with each follow-up blood test (every 4 months).   My latest TTG test in January 2021 was 28.  I am hopeful the next one this summer will be in the "normal" range. 🤞  

It took me a year to get near normal TTG readings, so your progress in only 3 months seems fantastic!  And, most important, you are noticing a big improvement in other symptoms. 

I don't know if my experience with TTG levels is "typical" but I understand it can take awhile to "flush" all the G antibodies out of the system.    For me, a year seemed like an eternity after first diagnosis, esp. since I was trying to adapt to new G and other food worries in a year of already heightened pandemic paranoia/anxiety. 

Best of luck with your upcoming endoscopy and colonoscopy.   

[Melissa93]

47 minutes ago, Kate333 said:

Hi Chris.  You're DEFINITELY doing the right things!

I was diagnosed in late 2019 after TTG blood test.  My first (highest) TTG level at diagnosis was 224.  I adopted a strict gluten-free diet and eliminated ALL packaged foods (IMO you're right about that being "boxed garbage"--gluten-free-labeled or not).  Then I noticed the numbers rapidly fell about 50% with each follow-up blood test (every 4 months).   My latest TTG test in January 2021 was 28.  I am hopeful the next one this summer will be in the "normal" range. 🤞  

It took me a year to get near normal TTG readings, so your progress in only 3 months seems fantastic!  And, most important, you are noticing a big improvement in other symptoms. 

I don't know if my experience with TTG levels is "typical" but I understand it can take awhile to "flush" all the G antibodies out of the system.    For me, a year seemed like an eternity after first diagnosis, esp. since I was trying to adapt to new G and other food worries in a year of already heightened pandemic paranoia/anxiety. 

Best of luck with your upcoming endoscopy and colonoscopy.   

Such big improvements! Can I ask you what your IGA (immunoglobulins A) levels are? Assuming they test those levels as well when you get your TTG-IGA levels checked?

[Kate333]

13 minutes ago, Melissa93 said:

Such big improvements! Can I ask you what your IGA (immunoglobulins A) levels are? Assuming they test those levels as well when you get your TTG-IGA levels checked?

Hi Melissa93.  I live in the USA and have Kaiser Permanente insurance.  My docs here always test both TTG and DPG levels (which includes IGA).   My DPG numbers have always been in the normal range (14.9 or less; scale for both TTG and DPG).   What were yours/what are they now?  As long as the "trend" is downward, you should celebrate or consider CC.  

I only buy, cook, and eat fresh meats, fruits, veggies, nuts.  Zero packaged food; not even those labeled "certified gluten-free" because I just don't trust food company claims. 

I stopped eating out when the pandemic closed all the restaurants in March 2020.  Once I figured out what gluten-free diet really means (big trial and error period!!), stopped eating ANY packaged food and restaurants, I noticed the dramatic improvement in TTG #s.  Also, I live alone so my chances of cross-contamination are pretty low.

   

[Melissa93]

2 minutes ago, Kate333 said:

Hi Melissa93.  I live in the USA and have Kaiser Permanente insurance.  My docs here always test both TTG and DPG levels (which includes IGA).   My DPG numbers have always been in the normal range (14.9 or less; scale for both TTG and DPG).   What were yours/what are they now?  As long as the "trend" is downward, you should celebrate or consider CC.  

I only buy, cook, and eat fresh meats, fruits, veggies, nuts.  Zero packaged food; not even those labeled "certified gluten-free" because I just don't trust food company claims. 

I stopped eating out when the pandemic closed all the restaurants in March 2020.  Once I figured out what gluten-free diet really means (big trial and error period!!), stopped eating ANY packaged food and restaurants, I noticed the dramatic improvement in TTG #s.  Also, I live alone so my chances of cross-contamination are pretty low.

   

Interesting! I live in the US as well, but my doctor does not test for DPG. He usually test TTG-IGA (was 9 and now 1 within six months). Endomysical IGA was just ‘positive’ 6 months ago and they didn’t repeat that test now. Gliadin IGG levels were 5 now, which us normal.

the only thing is that I am partially Selective IGA deficient, which they just told me this week. So my IGA antibodies are all quite relative as they are too low anyway. But my doctor still told me it was really good that they are all in negative levels now. It’s just made me really curious what other people IGA levels are.

 

but I totally agree with you on your food comments. I started out with some certified gluten-free processed foods, but I notice that I feel better when I just eat the nuts (they are certified gluten-free still lol) and the low-fructose fruits instead of a nut bar for example. The pandemic has made it quite easy not to eat out tho, and I’m a little nervous when I can again. Just as I live in NYC and have a very frequent travel job, so at some point I’m going to have to build some experience with restaurants..

 

[Kate333]

9 minutes ago, Melissa93 said:

Interesting! I live in the US as well, but my doctor does not test for DPG. He usually test TTG-IGA (was 9 and now 1 within six months). Endomysical IGA was just ‘positive’ 6 months ago and they didn’t repeat that test now. Gliadin IGG levels were 5 now, which us normal.

the only thing is that I am partially Selective IGA deficient, which they just told me this week. So my IGA antibodies are all quite relative as they are too low anyway. But my doctor still told me it was really good that they are all in negative levels now. It’s just made me really curious what other people IGA levels are.

 

but I totally agree with you on your food comments. I started out with some certified gluten-free processed foods, but I notice that I feel better when I just eat the nuts (they are certified gluten-free still lol) and the low-fructose fruits instead of a nut bar for example. The pandemic has made it quite easy not to eat out tho, and I’m a little nervous when I can again. Just as I live in NYC and have a very frequent travel job, so at some point I’m going to have to build some experience with restaurants..

 

I know it's hard to keep health anxiety under control (which I have BIG TIME since my diagnosis), but I find staying off "Dr. Google" and avoiding getting too worried about lab results/meaning really helps.  I know, easier said than done...:-).  You will also notice a lot of comments here, touting this or that supplement or product.  IMO, best to check with your docs before spending $$ on them.

If you haven't done so already, make sure you get a Covid vaccine.  I got the Johnson & Johnson one March 11 and, must to my pleasant surprise, I had ZERO side effects!  Not even a sore arm.  

    

[Melissa93]

3 minutes ago, Kate333 said:

I know it's hard to keep health anxiety under control (which I have BIG TIME since my diagnosis), but I find staying off "Dr. Google" and avoiding getting too worried about lab results/meaning really helps.  I know, easier said than done...:-).  You will also notice a lot of comments here, touting this or that supplement or product.  IMO, best to check with your docs before spending $$ on them.

If you haven't done so already, make sure you get a Covid vaccine.  I got the Johnson & Johnson one March 11 and, must to my pleasant surprise, I had ZERO side effects!  Not even a sore arm.  

    

Oh yes 😩. I tend to want to google everything as well, but my doctor gave me a link to a website with explanation about immune deficiency like mine. Which was both comforting and worrisome lol. The idea just has to settle I guess. Its good to know that my immune-diseases and asthma etc are being caused by something, but its also scary. Luckily I am asymptomatic (meaning I dont have any infection problems), and hope to stay like that my whole life 🙏🏼.

 

and yes I got my vaccine! Pfizer in my case. I did get sick from my second shot, which with my immune deficiency was a good sign lol. Very relieved. I believe J&J has much less side effects and sooo nice that it’s just one shot!

 

thanks for all your advice 🙂, appreciate it!

[Kate333]

1 minute ago, Melissa93 said:

Oh yes 😩. I tend to want to google everything as well, but my doctor gave me a link to a website with explanation about immune deficiency like mine. Which was both comforting and worrisome lol. The idea just has to settle I guess. Its good to know that my immune-diseases and asthma etc are being caused by something, but its also scary. Luckily I am asymptomatic (meaning I dont have any infection problems), and hope to stay like that my whole life 🙏🏼.

 

and yes I got my vaccine! Pfizer in my case. I did get sick from my second shot, which with my immune deficiency was a good sign lol. Very relieved. I believe J&J has much less side effects and sooo nice that it’s just one shot!

 

thanks for all your advice 🙂, appreciate it!

Yes!  In fact, a big reason I got the J&J shot was because I knew I would 🐤 out and not get a 2nd shot if the 1st one made me sick.😱  LOL  The other reason was because J&J held their vaccine trials later than Pfizer/Moderna and included the effects on the "latest" Covid "variants" (mutations); whereas the others were developed a bit earlier and not yet tested on those before approval.   

And be careful if you resume traveling for work again.  So many restaurants here in the US advertise so-called "gluten-free" dishes and menus.  I avoid them because they are usually too fast-paced, with cramped, shared food prep facilities, utensils/dishes, and staff who really can't be expected to understand all the nuances required by strict gluten-free diets.  You are probably safe to limit yourself to salads and fruits/veggies, just make sure no toppings/dressings.  I wouldn't risk eating cooked meat out because CC just too easy.   

You are welcome to ask Qs anytime.  (Or you can also drop a line by clicking the envelope icon next to my name if you want to chat about topics other than those on the Forum threads.)   One of the best things about this site is being able to chat with folks from elsewhere in the US and across the world.   Have a great weekend!

[Scott Adams]

5 hours ago, Melissa93 said:

Do those AN-PEP enzymes work well for you? I haven't really gotten into enzymes or idk specific supplements when you get glutened, but I usually travel a lot with work (not right now still). Quite anxious about food outside of the house.

I use the one who is an advertiser here called "GliadinX" and after I started using them every time I eat outside my home I stopped having issues. We've published many articles here summarizing studies that show that people who eat out regularly, like myself, get regular amounts of contamination, almost no matter how careful the restaurant claims to be. I'm not encouraging anyone to eat out, especially during recovery, but there are definitely times when having the enzymes handy has likely saved me some hardship.

[Melissa93]

29 minutes ago, Kate333 said:

Yes!  In fact, a big reason I got the J&J shot was because I knew I would 🐤 out and not get a 2nd shot if the 1st one made me sick.😱  LOL  The other reason was because J&J held their vaccine trials later than Pfizer/Moderna and included the effects on the "latest" Covid "variants" (mutations); whereas the others were developed a bit earlier and not yet tested on those before approval.   

And be careful if you resume traveling for work again.  So many restaurants here in the US advertise so-called "gluten-free" dishes and menus.  I avoid them because they are usually too fast-paced, with cramped, shared food prep facilities, utensils/dishes, and staff who really can't be expected to understand all the nuances required by strict gluten-free diets.  You are probably safe to limit yourself to salads and fruits/veggies, just make sure no toppings/dressings.  I wouldn't risk eating cooked meat out because CC just too easy.   

You are welcome to ask Qs anytime.  (Or you can also drop a line by clicking the envelope icon next to my name if you want to chat about topics other than those on the Forum threads.)   One of the best things about this site is being able to chat with folks from elsewhere in the US and across the world.   Have a great weekend!

Thanks Kate! I will probably do so, now that I know how that works haha, it would be great to get some extra tips and tricks about eating out. I’ve already done a bit of research to slowly prep myself, but as I’m new to the diet and also have autism, it’s great to prepare so that I reduce the amount of uncertainty or unexpected questions and risks.

 

☺️☺️

10 minutes ago, Scott Adams said:

I use the one who is an advertiser here called "GliadinX" and after I started using them every time I eat outside my home I stopped having issues. We've published many articles here summarizing studies that show that people who eat out regularly, like myself, get regular amounts of contamination, almost no matter how careful the restaurant claims to be. I'm not encouraging anyone to eat out, especially during recovery, but there are definitely times when having the enzymes handy has likely saved me some hardship.

Thanks for the info! Will look it up

[DJFL77I]

mine went from over 100 to like 10 in 5 - 6 months...    was still high at 10 but barely..   im having another test in June ( 6 months later )..    im expecting it to be zero but who knows