anti tTG update

[Ivana]

Hello,

I have not been on the forum in a while, but I would like to post an update about my recovery. At the time of diagnosis 11 months ago my anti tTG levels were 900. I have just retested them a few days ago and they are now 38 (the lab says over 20 is positive). My ferritin levels also rose from below referential values to 24 (4.6-204). As anaemia was my only symptom, I guess this is a sign of healing. I hope the downward trend with antibodies will continue. I will recheck in 3 months again. As I don't have any GI reactions, I can never be sure if I am getting CC-d, and I hope the above positive mark is not due to that. 

If anyone is interested, my diet remained largely the same, as even before the diagnosis I ate mostly home cooked meals, all of which can be done in gluten-free version with minimal changes. My home is gluten-free. If I eat out, it is only the 3 dedicated gluten-free eateries in my city. Twice I ate at other people's homes when they had a BBQ, the preparation of which I oversaw. I also eat at my parents' sometimes which is not a gluten-free household but precaution is taken. I do eat gluten-free snacks or chocolate occasionally. Interesting thing is that before I hardly ever ate bread (I don't like dry food!), but now, since where I live celiacs get free gluten-free flour, I make bread 2 or so times a week in a bread machine and eat it with jam and butter for dinner, mostly because it is annoying to always cook, and there is no option of grabbing something outside quickly, as I used to do before.

As for my overall health status - this is the frustrating part. Everyone asks me whether I feel better on a gluten-free diet, but I never felt sick before the diagnosis in the first place. Ever since the diagnosis, however, I developed a really bad health anxiety and depression, which caused upper body muscle tension which I am having a hard time relaxing (some will perhaps say this is also celiac, but I don't think so when I consider how the tension started). This is also the reason I avoided this and other celiac forums, as I didn't want to be reminded of the "disease" constantly. I figured I am doing what I can, and the rest is not really in my control (all these celiac studies seem very negative and make me feel like now I am up for some other conditions as well.) I AM grateful for all the information provided here, and it is good to know that there is a place I can turn to when I am in need of a knowledgable celiac community. So thank you, Scott, and all the moderators!

I wish all of you a good health and a positive mindset.

 

[Scott Adams]

Thanks for the update! On one had, you are lucky not to have noticeable symptoms, and it's great to hear that you are still vigilant about your gluten-free diet, but as you may know your health risks are the same as those who are symptomatic, and unfortunately many in your shoes don't take the diet as seriously when they are asymptomatic. 

900 tTG is crazy high, and it's interesting to see how long it can take to get down to 30 for you, which is still considered positive. FYI: There is new research that indicates that casein sensitivity can also increase tTG levels, and that the test may not be as sensitive as believed. If you can't get this to go lower, perhaps you could try a casein-free diet?:

 

 

[Ivana]

1 hour ago, Scott Adams said:

Thanks for the update! On one had, you are lucky not to have noticeable symptoms, and it's great to hear that you are still vigilant about your gluten-free diet, but as you may know your health risks are the same as those who are symptomatic, and unfortunately many in your shoes don't take the diet as seriously when they are asymptomatic. 

900 tTG is crazy high, and it's interesting to see how long it can take to get down to 30 for you, which is still considered positive. FYI: There is new research that indicates that casein sensitivity can also increase tTG levels, and that the test may not be as sensitive as believed. If you can't get this to go lower, perhaps you could try a casein-free diet?:

 

 

Thanks for replying, Scott!

I am hoping I just need a little more time to get the levels below the positive mark. As I only retested once, and only after almost a year, I don't know what the speed of the levels falling down was. (I sure do hope they didn't reach 38 months ago, and now won't budge!) That's why I will retest soon. I still do think it is a good "result", considerng, or that I am on a good path. 

I am, of course, vigilant about my food, and am now forsaking even those ocassional gluten free snacks. I am actually planning my first trip after the diagnosis, to Turkey, and have already resigned in my mind to eating something like fruit and yoghurt for 5 days :) 

So, casein could also damage villi then and cause the same harm as gluten? I eat quite a lot of dairy: coffee with milk, cheese (gauda or mozzarella), and kefir almost daily. I do hope I won't have to give that up too! 

[Scott Adams]

Casein intolerance I believe can, in rare cases, cause villi damage, but it's not very common. I'd like to see more research on this though. I

I think you're probably correct, and the long recovery time may be due to your initial really high antibody levels. If they don't go down further consider the casein possibility.

[MADMOM]

On 6/29/2021 at 4:48 AM, Ivana said:

Hello,

I have not been on the forum in a while, but I would like to post an update about my recovery. At the time of diagnosis 11 months ago my anti tTG levels were 900. I have just retested them a few days ago and they are now 38 (the lab says over 20 is positive). My ferritin levels also rose from below referential values to 24 (4.6-204). As anaemia was my only symptom, I guess this is a sign of healing. I hope the downward trend with antibodies will continue. I will recheck in 3 months again. As I don't have any GI reactions, I can never be sure if I am getting CC-d, and I hope the above positive mark is not due to that. 

If anyone is interested, my diet remained largely the same, as even before the diagnosis I ate mostly home cooked meals, all of which can be done in gluten-free version with minimal changes. My home is gluten-free. If I eat out, it is only the 3 dedicated gluten-free eateries in my city. Twice I ate at other people's homes when they had a BBQ, the preparation of which I oversaw. I also eat at my parents' sometimes which is not a gluten-free household but precaution is taken. I do eat gluten-free snacks or chocolate occasionally. Interesting thing is that before I hardly ever ate bread (I don't like dry food!), but now, since where I live celiacs get free gluten-free flour, I make bread 2 or so times a week in a bread machine and eat it with jam and butter for dinner, mostly because it is annoying to always cook, and there is no option of grabbing something outside quickly, as I used to do before.

As for my overall health status - this is the frustrating part. Everyone asks me whether I feel better on a gluten-free diet, but I never felt sick before the diagnosis in the first place. Ever since the diagnosis, however, I developed a really bad health anxiety and depression, which caused upper body muscle tension which I am having a hard time relaxing (some will perhaps say this is also celiac, but I don't think so when I consider how the tension started). This is also the reason I avoided this and other celiac forums, as I didn't want to be reminded of the "disease" constantly. I figured I am doing what I can, and the rest is not really in my control (all these celiac studies seem very negative and make me feel like now I am up for some other conditions as well.) I AM grateful for all the information provided here, and it is good to know that there is a place I can turn to when I am in need of a knowledgable celiac community. So thank you, Scott, and all the moderators!

I wish all of you a good health and a positive mindset.

 

that’s so great!  i had no major symptoms either but anemia was one - i’m going to get tested mid july at my 6 month point - i’m hoping my levels have dropped like yours / ❤️

[Ivana]

11 hours ago, MADMOM said:

that’s so great!  i had no major symptoms either but anemia was one - i’m going to get tested mid july at my 6 month point - i’m hoping my levels have dropped like yours / ❤️

Thank you for the heart, Madmom!

Yes, I was scared when I first saw how high my levels were and now I am more hopeful that I can have them under control eventually. It seems even up to 2 years is not so unusual, so I actually braced myself for much higher levels before retesting than they actually turned out to be. I hope you get encouraging news soon too! ❤️

[icelandgirl]

Hi Ivana,

Sending you ((((hugs)))!

I'm so glad that you got such good results...that means you are doing really well on a gluten free diet.  My levels were not nearly as high as yours to start and it took about 18 months to get them to normal.  You're doing great!

I've also struggled with health anxiety and depression and it's so frustrating.  I just want you to know that you're not alone in that and that this is a great place to come share with others who may be feeling the same as you are.  

[Ivana]

On 7/1/2021 at 5:55 PM, icelandgirl said:

Hi Ivana,

Sending you ((((hugs)))!

I'm so glad that you got such good results...that means you are doing really well on a gluten free diet.  My levels were not nearly as high as yours to start and it took about 18 months to get them to normal.  You're doing great!

I've also struggled with health anxiety and depression and it's so frustrating.  I just want you to know that you're not alone in that and that this is a great place to come share with others who may be feeling the same as you are.  

Hi Icelandgirl,

thank you for such a sweet respose! It made me happy.

I agree it is all quite frustrating, and on top of it, I always wonder whether I am doing enough or being cautios enough ("do I really need to eat this processed cookie, even if gluten free?") I guess we need to find a balance, as with everything else in life. I definitely feel grateful for this forum and kind souls like you. 

Off topic, are you from Iceland? If so, what is the gluten free "scene" like over there? I have been planning to visit for years now (even almost applied for a 4 year scholarship to study Icelandic literature once )

[icelandgirl]

8 hours ago, Ivana said:

Hi Icelandgirl,

thank you for such a sweet respose! It made me happy.

I agree it is all quite frustrating, and on top of it, I always wonder whether I am doing enough or being cautios enough ("do I really need to eat this processed cookie, even if gluten free?") I guess we need to find a balance, as with everything else in life. I definitely feel grateful for this forum and kind souls like you. 

Off topic, are you from Iceland? If so, what is the gluten free "scene" like over there? I have been planning to visit for years now (even almost applied for a 4 year scholarship to study Icelandic literature once )

Hi Ivana,

I just say keep up the good work...you are definitely on the right path!

I am from Iceland, but have lived in the US since I was 8.  I wasn't diagnosed until my early 40s so I can't answer to what the gluten free scene is like.  I do know that my family in general was more gluten aware than most people where I live so it might be ok.  Icelandic literature would be quite a heavy subject!!  If you decide to go, let me know.  I'll see what I can find out for you from relatives.  😀

[GodsGal]

Hi Ivana!

Wow! Way to go! I'm proud of you. You have worked really hard. 

I, like you, am not a fan of being asked, "Are you feeling better?" I think that people mean well when they ask it. But, it often comes at a moment when I am lamenting. And, then it feels like I am not being "heard".

It's also really encouraging to hear about how you have been able to adapt your cooking. I'm still working on that myself. What is one of your favorite things to make?

[Ivana]

9 hours ago, GodsGal said:

Hi Ivana!

Wow! Way to go! I'm proud of you. You have worked really hard. 

I, like you, am not a fan of being asked, "Are you feeling better?" I think that people mean well when they ask it. But, it often comes at a moment when I am lamenting. And, then it feels like I am not being "heard".

It's also really encouraging to hear about how you have been able to adapt your cooking. I'm still working on that myself. What is one of your favorite things to make?

Hi GodsGal! Nice to hear from you and thank you for your encouragement!

I am not really a proficient cook (or not at all!) so most of the meals I made pre and post celiac are quite plain and have basically remained more or less the same even in the gluten free version. (I live in SE Europe and home cooking is still pretty much the norm and it often basically follows soup-main meal-salad pattern, although more and more people are starting to buy premaid meals, or at least ditching the daily soup which takes a while to be cooked). Hmmm...  let me see.... in the summer months I really enjoy simple salads, such as mozzarella-tomato-cucumber-olive oil-apple vinegar-basil salad (I could eat a ton of it in one sitting :)), or a certified quinoa (this is one of the things that I only discovered post diagnosis)-canned tuna-cucumber-above oil etc. and spices) salad. I also always liked zucchini-cream-garlic sauce with pasta (I am finding barilla gluten free to be the best), as well as minced meat-whatever vegatebles I have-tomato sauce with pasta. In winter months I like every version of vegetable stews, which is basically stir frying onions, and adding potato and carrot cubes and then water, other vegetables and spices and cooking till it is relatively thick (for this macaroni can also be added in the end inside, as well as meat cubes). Red beet is also popular here, so in winter I regularly boil it and then make a salad (little sugar, salt, olive oil, apple vinegar and cumin). Otherwise my meals are often only mashed/boiled/stir fried potatos, or cooked rice with some separately made vegetables (such as brussels sprouts or kale with butter, spinach on olive oil and garlic) and then a piece of chicken or fish or some other meat (I really don't care about meat actually but others in family do). For others non-main meals of the day I eat bananas (breakfast), bread with condiments, fried eggs, polenta and yoghurt (dinner). I must say that my cooking is quite "dumbed down" from my parents' who regularly cook (for hours) brown beans with some dry meat, or things like sauerkraut or paprikas filled with rice and minced meat. I should start making those more time-consuming meals myself too because they are both delicious and nutritious but now I can't eat them safely elsewhere.

I don't know where you come from and whether this food sounds a bit strange to you. Here it is very common, available pretty much everywhere and also very affordable as it is what most people eat daily (except for quinoa!). What are your favourite meals to prepare?

[GodsGal]

1 hour ago, Ivana said:

Hi GodsGal! Nice to hear from you and thank you for your encouragement!

I am not really a proficient cook (or not at all!) so most of the meals I made pre and post celiac are quite plain and have basically remained more or less the same even in the gluten free version. (I live in SE Europe and home cooking is still pretty much the norm and it often basically follows soup-main meal-salad pattern, although more and more people are starting to buy premaid meals, or at least ditching the daily soup which takes a while to be cooked). Hmmm...  let me see.... in the summer months I really enjoy simple salads, such as mozzarella-tomato-cucumber-olive oil-apple vinegar-basil salad (I could eat a ton of it in one sitting :)), or a certified quinoa (this is one of the things that I only discovered post diagnosis)-canned tuna-cucumber-above oil etc. and spices) salad. I also always liked zucchini-cream-garlic sauce with pasta (I am finding barilla gluten free to be the best), as well as minced meat-whatever vegatebles I have-tomato sauce with pasta. In winter months I like every version of vegetable stews, which is basically stir frying onions, and adding potato and carrot cubes and then water, other vegetables and spices and cooking till it is relatively thick (for this macaroni can also be added in the end inside, as well as meat cubes). Red beet is also popular here, so in winter I regularly boil it and then make a salad (little sugar, salt, olive oil, apple vinegar and cumin). Otherwise my meals are often only mashed/boiled/stir fried potatos, or cooked rice with some separately made vegetables (such as brussels sprouts or kale with butter, spinach on olive oil and garlic) and then a piece of chicken or fish or some other meat (I really don't care about meat actually but others in family do). For others non-main meals of the day I eat bananas (breakfast), bread with condiments, fried eggs, polenta and yoghurt (dinner). I must say that my cooking is quite "dumbed down" from my parents' who regularly cook (for hours) brown beans with some dry meat, or things like sauerkraut or paprikas filled with rice and minced meat. I should start making those more time-consuming meals myself too because they are both delicious and nutritious but now I can't eat them safely elsewhere.

I don't know where you come from and whether this food sounds a bit strange to you. Here it is very common, available pretty much everywhere and also very affordable as it is what most people eat daily (except for quinoa!). What are your favourite meals to prepare?

Sounds delicious! 

I am in the USA. I am very familiar with most of what you described. You are making me hungry!😊 

I have a weird schedule, so it makes it hard to have time to make full fledged meals sometimes. I like simple, one pot meals. One of my favorite things to do is put some rice, vegetables, and a can of gluten free beans in the rice cooker. Throw in my favorite gluten free seasoning/spices, press start, and dinner is ready in about half an hour! I also enjoy putting a roast in the crock pot with chunks of veggies and seasonings, or barbequing chicken in the oven. 😊 I use a lot of rice. 

[Ivana]

45 minutes ago, GodsGal said:

Sounds delicious! 

I am in the USA. I am very familiar with most of what you described. You are making me hungry!😊 

I have a weird schedule, so it makes it hard to have time to make full fledged meals sometimes. I like simple, one pot meals. One of my favorite things to do is put some rice, vegetables, and a can of gluten free beans in the rice cooker. Throw in my favorite gluten free seasoning/spices, press start, and dinner is ready in about half an hour! I also enjoy putting a roast in the crock pot with chunks of veggies and seasonings, or barbequing chicken in the oven. 😊 I use a lot of rice. 

I like rice too. I lived in East Asia for many years so I got used to it for almost every meal. I didn't know you can cook other things on top of rice in rice cookers. Now that I know, I might invest in one too, or in a crock pot for that matter. I see it used in many recipes and I also love one pot meals. Yes, my schedule is also weird, so sometimes I will have a real meal for lunch, sometimes for dinner, sometimes not at all. But anyway, I hope that the only long term change celiac will bring in my life will be improvement in my cooking abilities and enjoyment and appreciation of healthy meals.

[Scott Adams]

You may want to try using an Instapot, which seems to be the the craze now, and in my mind the modern version of a crock pot--it uses pressure and cooks things much faster, rather than slower. We make soups, stews, etc., using it in ~20% of the time it would normally take.

[Ivana]

5 minutes ago, Scott Adams said:

You may want to try using an Instapot, which seems to be the the craze now, and in my mind the modern version of a crock pot--it uses pressure and cooks things much faster, rather than slower. We make soups, stews, etc., using it in ~20% of the time it would normally take.

Hi Scott, thanks for the suggestion. I never thought about these modern appliances. I only use pressure cooker to quickly boil potatos and such. (I am actually a bit traumatised by it because I opened one when I was a child... luckily with only a small burn on my hand as consequence.)  🙂

[GodsGal]

2 minutes ago, Ivana said:

Hi Scott, thanks for the suggestion. I never thought about these modern appliances. I only use pressure cooker to quickly boil potatos and such. (I am actually a bit traumatised by it because I opened one when I was a child... luckily with only a small burn on my hand as consequence.)  🙂

Glad it was not any worse than that!

[Ivana]

2 minutes ago, GodsGal said:

Glad it was not any worse than that!

Yes! The kitchen was full of boiling soup (so oil/grease in it too), but only a small amount landed on me. 

[Scott Adams]

2 hours ago, Ivana said:

Hi Scott, thanks for the suggestion. I never thought about these modern appliances. I only use pressure cooker to quickly boil potatos and such. (I am actually a bit traumatised by it because I opened one when I was a child... luckily with only a small burn on my hand as consequence.)  🙂

The Instapot is safe and easy to use. It's got lots of electronic settings for different things you might cook. We were skeptical too, but got one as a gift (they are popular in Asia, and my wife is from Taiwan), and we love it. We also got one for my son who's going to college now, and he uses it to cook a pot of food which can last him a few days.

[Ivana]

Hello everyone, here is another update almost 4 months later. So I retested ttg iga and now it was 3,4 (different lab from before, here negative is below 7; 7-10 is weak positive, above 10 positive). Needless to say, I am very relieved. So it took me about 14 months to go into the negative range from originally very high numbers. Just before doing this last test, I visited a Scandinavian country and upon hearing that they are knowledgeable about celiac, I ate out on 5 occasions, ordering gluten free meals in otherwise gluten serving restaurants.  I never do this otherwise or in my country. So it was a sort of an experiment to see whether I can sometimes eat out in places with good reputation. Before every meal I took one gliadin x pill. I have no way of knowing whether they helped or not as I still seem to be a silent celiac. I am also not encouraging anyone to do the same, I am just reporting about my experience and choices. Before I get tested next time, I will start consuming certified oats and see if I can have them or not. After that, I hope I will be set, diet-wise, ie. know what works for me. Oh my iron is now almost on the upper limit. I was so used to eating food rich in iron from years of struggling with anemia that I did not realise that now I can start eating normally... My vitamin d is still on the lower limits. I find this a bit strange but I also know that this is a problem among general population too. I will take supplements for that. 

[icelandgirl]

Hi Ivana and yay!!

That's amazing news!  It does take a while to get those numbers down sometimes...mine took 18  months.  You are definitely doing things the right way and it's paying off! Good job!

Just out of curiosity, which Scandinavian country did you visit?

Keep up the good work!

[RMJ]

1 hour ago, Ivana said:

Hello everyone, here is another update almost 4 months later. So I retested ttg iga and now it was 3,4 (different lab from before, here negative is below 7; 7-10 is weak positive, above 10 positive). Needless to say, I am very relieved. So it took me about 14 months to go into the negative range from originally very high numbers.

Congratulations!  Good job on the gluten free diet.  

[Ivana]

4 minutes ago, icelandgirl said:

Hi Ivana and yay!!

That's amazing news!  It does take a while to get those numbers down sometimes...mine took 18  months.  You are definitely doing things the right way and it's paying off! Good job!

Just out of curiosity, which Scandinavian country did you visit?

Keep up the good work!

Thank you! I visited Finland. I realise now that "Scandinavian" might have been a misnomer 🙂. 

[icelandgirl]

14 minutes ago, Ivana said:

Thank you! I visited Finland. I realise now that "Scandinavian" might have been a misnomer 🙂. 

I'm so glad that you had such a good experience!  I look forward to travelling internationally, I've been scared food-wise, but I really do want to get out there.