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Nannu

Confused, Frustrated, Upset And Tired Of High Ttg Levels

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Hi All,

Today I got the reports of my DD's one year follow up blood tests and her anti ttg iga tests are the same as they were at the time of diagnosis, very high positive (>290). Her last test was done in september 2011 and report was the same. After that report, we became super strict and everything for her was prepared at home right from scratch and i mean it. Absolutely, no eating out etc everything was followed completely with full honesty. when i told my DD about her reports, her first reaction was "Mamma, i didn't do anything naughty." She is careful...really careful. the entire family has gone gluten free so as to avoid all kind of cc. So, we did everything we could to the best of our knowledge. And here i am with the results. What do i do? Her thyroid, diabetes, cholestrol all tests are normal.

I understand sometimes other auto immune diseases can keep the antibody levels high, but what is it that i can test for? I don't see symptoms of anything else.

Can someone throw some light on what tests can be done? what are the related symptoms? My DD has shown great improvement in terms of overall health, height and weight etc after going gluten free. She was diagnosed through a biopsy though now i am getting a feel if the biopsy was done correctly or not whether she is really a celiac or not? She doesn't ever show any symptoms of getting glutened. My entire faith on her diagnoses has shaken. I feel so helpless. We would be meeting our doctor soon. Please throw any suggestions so that we can sort out this riddle. Its killing me now.

I have always been on this forum and got a lot from it. My big thanks to everybody for their support and suggestions.

Nannu

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First off, HUGS!!!!!!

I am so sorry you are dealing with this. I guess I would start with a few questions:

1) What does the Dr. say

2) What were her labs all the times they were checked? Are they trending downward at all?

3) Did she have a biopsy?

I ask because these were things we went through. We started at >120, dropped to 48, 36, 34 and that's it. We are currently in the process of figuring out if my DS has a thyroid issue.

If you are making everything are you using ANYTHING processed? This fist time we started looking through DS's foods and found out that the one mustard we were using had gluten in it. We testing foods that weren't labeled for gluten-free and couldn't get an answer form the company on. 99% of DS's food is make here (he has Celiac and a lot of food allergies so we can't use convince foods, I make it all.) After we pulled mustard, we still didn't get the levels we were hoping for which lead us to this (thyroid testing).

It's so hard when we are doing everything we can for our kids. It sound like you are doing everything you can! Taking the whole house gluten-free is true dedication (we haven't done that...yet. We have discussed that being the next step here!)

I will try and link to my thread on our latest escapades. Maybe it'll give you some insight of what to look for.

Again (((((hugs))))

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Hi All,

Today I got the reports of my DD's one year follow up blood tests and her anti ttg iga tests are the same as they were at the time of diagnosis, very high positive (>290). Her last test was done in september 2011 and report was the same. After that report, we became super strict and everything for her was prepared at home right from scratch and i mean it. Absolutely, no eating out etc everything was followed completely with full honesty. when i told my DD about her reports, her first reaction was "Mamma, i didn't do anything naughty." She is careful...really careful. the entire family has gone gluten free so as to avoid all kind of cc. So, we did everything we could to the best of our knowledge. And here i am with the results. What do i do? Her thyroid, diabetes, cholestrol all tests are normal.

I understand sometimes other auto immune diseases can keep the antibody levels high, but what is it that i can test for? I don't see symptoms of anything else.

Can someone throw some light on what tests can be done? what are the related symptoms? My DD has shown great improvement in terms of overall health, height and weight etc after going gluten free. She was diagnosed through a biopsy though now i am getting a feel if the biopsy was done correctly or not whether she is really a celiac or not? She doesn't ever show any symptoms of getting glutened. My entire faith on her diagnoses has shaken. I feel so helpless. We would be meeting our doctor soon. Please throw any suggestions so that we can sort out this riddle. Its killing me now.

I have always been on this forum and got a lot from it. My big thanks to everybody for their support and suggestions.

Nannu

I am in the same boat with high TTG a year later despite being extremely careful in a gluten-free household. I definitely have symptoms when glutened, though, and all my symptoms have not gone away.

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Hi All,

Today I got the reports of my DD's one year follow up blood tests and her anti ttg iga tests are the same as they were at the time of diagnosis, very high positive [b](>290). Her last test was done in september 2011 and report was the same. After that report, we became super strict and everything for her was prepared at home right from scratch and i mean it. Absolutely, no eating out etc everything was followed completely with full honesty. when i told my DD about her reports, her first reaction was "Mamma, i didn't do anything naughty." She is careful...really careful. the entire family has gone gluten free so as to avoid all kind of cc. So, we did everything we could to the best of our knowledge. And here i am with the results. What do i do? Her thyroid, diabetes, cholestrol all tests are normal.

I understand sometimes other auto immune diseases can keep the antibody levels high, but what is it that i can test for? I don't see symptoms of anything else.

Can someone throw some light on what tests can be done? what are the related symptoms? My DD has shown great improvement in terms of overall health, height and weight etc after going gluten free. She was diagnosed through a biopsy though now i am getting a feel if the biopsy was done correctly or not whether she is really a celiac or not? She doesn't ever show any symptoms of getting glutened. My entire faith on her diagnoses has shaken. I feel so helpless. We would be meeting our doctor soon. Please throw any suggestions so that we can sort out this riddle. Its killing me now.

I have always been on this forum and got a lot from it. My big thanks to everybody for their support and suggestions.

Nannu

with the lab reporting "more than" instead of a number, you truly don't know where you started from! DD has grown etc....you could have started at 1000 and now be at 291, there is no way of knowing.

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How confusing. If your daughter had a positive biopsy and is growing better and healthier off gluten I don't think there is much question of celiac disease.

I've read TTG can appear in other inflammatory bowel diseases, thyroid disease, autoimmune hepatitis, and rheumatoid arthritis. If your daughter shows no signs of these perhaps she just has antibodies for no good reason?

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First off, HUGS!!!!!!

I am so sorry you are dealing with this. I guess I would start with a few questions:

1) What does the Dr. say

2) What were her labs all the times they were checked? Are they trending downward at all?

3) Did she have a biopsy?

I ask because these were things we went through. We started at >120, dropped to 48, 36, 34 and that's it. We are currently in the process of figuring out if my DS has a thyroid issue.

If you are making everything are you using ANYTHING processed? This fist time we started looking through DS's foods and found out that the one mustard we were using had gluten in it. We testing foods that weren't labeled for gluten-free and couldn't get an answer form the company on. 99% of DS's food is make here (he has Celiac and a lot of food allergies so we can't use convince foods, I make it all.) After we pulled mustard, we still didn't get the levels we were hoping for which lead us to this (thyroid testing).

It's so hard when we are doing everything we can for our kids. It sound like you are doing everything you can! Taking the whole house gluten-free is true dedication (we haven't done that...yet. We have discussed that being the next step here!)

I will try and link to my thread on our latest escapades. Maybe it'll give you some insight of what to look for.

Again (((((hugs))))

Dear StephanieL,

Thanks a ton for Hugs. I guess i needed that. As of now,i have not shared this reports news with anyone in my both the families because all of them will start panicking and i guess i need my own peace of mind at this stage to manage this situation. So, yes your hugs did mean to me a lot. Thanks once again.

Just to answer your questions:

1) What does the Dr. say? Reports came in yesterday only and had a email exchange with my doc, she says to do anti endomysial antibody test and then see her. Not so sure what the test is for?

2) What were her labs all the times they were checked? Are they trending downward at all? Not at all. The 3 lab figures are (297, 291, 296)

3) Did she have a biopsy? - Yes, she did which i mentioned in my earlier post i am beginning to doubt.

All spices and flours are being grinded at home (i do it myself) and so mustard also, i use whole mustard and not the powder. Guess its ok. Sure, i'll check your thread. Though this entire exercise has been done last time the results were bad and trust me i don't have anything to eliminate any more.

Its nice that my doc has replied to my mail. let me do this test and see what it shows.

Thanks again

Nannu

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How confusing. If your daughter had a positive biopsy and is growing better and healthier off gluten I don't think there is much question of celiac disease.

I've read TTG can appear in other inflammatory bowel diseases, thyroid disease, autoimmune hepatitis, and rheumatoid arthritis. If your daughter shows no signs of these perhaps she just has antibodies for no good reason?

Thank you Skylark,

You have always helped. So, my only question here is "Is is ok to ignore such high antibody levels?" My worry is that it should not do any harm in the long run when we are trying to take all precautions.

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with the lab reporting "more than" instead of a number, you truly don't know where you started from! DD has grown etc....you could have started at 1000 and now be at 291, there is no way of knowing.

My apologies to not mention clearly :

The lab figures at three times were : 297, 291, 296

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I am in the same boat with high TTG a year later despite being extremely careful in a gluten-free household. I definitely have symptoms when glutened, though, and all my symptoms have not gone away.

Hi healinginprogress,

I am sorry that you are also going through the same situation. So, if i can ask you, what have your doctors suggested?

Thanks

Nannu

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Sorry, I have a bitty baby (4 months) and sometimes I start reading a post and reply in bits and I thought I read the entire post but obviously didn't per my dumb question about the biopsy and all! lol

Has she had thyroid testing?

I hear you about double checking every thing. We did the same things. Called, tested, called some more, emailed.

Sounds as if you are doing everything you can. I am sure you have looked at school for issues (if she's in school). Health and beauty products? All that stuff? (I am sure you have just talking it out!)

Where are you located? If you are in the US, have you considered having your Dr. call Dr. Fasano or one of the Doc's at the Chicago center?

Again, I know how frustrated you must be. I understand the biopsy stuff too. We were give an inconclusive biopsy result and Dr. Fasaon looked at the slides a month ago and said "negative". My sons levels went down a lot at first but not the second and third times. He was totally asymptomatic except for a zero Vit. D level.

More ((((((hugs)))). These are the tough parts of parenting they never warn you about :(

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Thank you Skylark,

You have always helped. So, my only question here is "Is is ok to ignore such high antibody levels?" My worry is that it should not do any harm in the long run when we are trying to take all precautions.

You're welcome. I would think if she has a repeat biopsy and things have healed, she is well and active, and shows no signs of nutritional deficiency or other diseases, she would be OK. I don't know for sure and I sure understand your worry. I read a lot of the peer-reviewed literature on celiac but I'm not a doctor.

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You're welcome. I would think if she has a repeat biopsy and things have healed, she is well and active, and shows no signs of nutritional deficiency or other diseases, she would be OK. I don't know for sure and I sure understand your worry. I read a lot of the peer-reviewed literature on celiac but I'm not a doctor.

Skylark,

Had an email exchange with doctor and she has ordered anti endomysial antibody test. We will do it tomorrow and lets see how it goes. I guess she would try to do all possible blood work before deciding on biopsy. I'll update after reports have come. Till then, anxiety will keep building, but can't run away from it. Thanks a lot.

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Sorry, I have a bitty baby (4 months) and sometimes I start reading a post and reply in bits and I thought I read the entire post but obviously didn't per my dumb question about the biopsy and all! lol

Has she had thyroid testing?

I hear you about double checking every thing. We did the same things. Called, tested, called some more, emailed.

Sounds as if you are doing everything you can. I am sure you have looked at school for issues (if she's in school). Health and beauty products? All that stuff? (I am sure you have just talking it out!)

Where are you located? If you are in the US, have you considered having your Dr. call Dr. Fasano or one of the Doc's at the Chicago center?

Again, I know how frustrated you must be. I understand the biopsy stuff too. We were give an inconclusive biopsy result and Dr. Fasaon looked at the slides a month ago and said "negative". My sons levels went down a lot at first but not the second and third times. He was totally asymptomatic except for a zero Vit. D level.

More ((((((hugs)))). These are the tough parts of parenting they never warn you about :(

Hey no issues at all, i really appreciate that you are able to contribute so much with a 4 month old baby. Well, my DD has been tested for thyroid and it is normal. We have tried to sensitize her teachers and staff at school as much as we can. I feel she is going on fine at school how much i am able to derive from talking to her. I am in India, but its a good idea. I will try to write to him directly on my own...he might be happy to guide us. Even my daughter's vit D levels were near 0 but they got back 2 months after gluten free diet.

Tomorrow, we go for a repeat blood work, i'll post after the results which will be by thursday evening. Yes, its difficult to control all this anxiety but i need to be patient to just wait for thursday. My heart sinks on the idea of another blood work in the same week.

Thanks once again and i wish you are able to sort out issues as well.

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You mentioned you were grinding all your flours. Could the grinder been used for gluten grains prior? Does she tolerate pure gluten free oats? There are approximately 15% of celiacs that don't tolerate even gluten free oats at all and can be sensitive to cross contamination from them in gluten free products.

I wouldn't be to quick to dismiss her previous diagnosis. It sounds like she has shown improvement gluten free and probably just needs some fine tuning. It can be difficult to figure things out. I've been there before.

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I am very symptomatic, and very sensitive. I did better grinding my spices at home, but better still when I grew them myself. I found that the taste of whole foods is good without too many spices when you get used to it.

Have you seen Tricia Thompsons study of gluten free grains? http://www.glutenfreedietitian.com/newsletter/contamination-of-naturally-guten-free-grains/

Many are contaminated. I ground my own grains, but only after sorting and washing first. Also, as someone suggested, the grinder might have cc. The first one I got had been tested with wheat. I sent it back and got another, which they tested with rice. That one was also cced., probably from being in the same room as all the ones getting tested with wheat. I had to run a lot of grain through it to get clean stuff. In hindsight, I should have taken it apart and cleaned it first, but I was afraid I wouldn't be able to get it back together.

You might want to try produce and meat for awhile and see if that helps. Does she have symptoms that you can use as a guideline? Have you checked soaps and toiletries? Pet food?

I hope you make progress. I know how hard it is to watch your child continue to be sick. My son is also very sensitive, and it has been a real struggle to get him symptom free.

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You mentioned you were grinding all your flours. Could the grinder been used for gluten grains prior? Does she tolerate pure gluten free oats? There are approximately 15% of celiacs that don't tolerate even gluten free oats at all and can be sensitive to cross contamination from them in gluten free products.

I wouldn't be to quick to dismiss her previous diagnosis. It sounds like she has shown improvement gluten free and probably just needs some fine tuning. It can be difficult to figure things out. I've been there before.

Hey Roda,

My DD doesnot take oats. Grinder is not contaminated i have checked on that. Only 2 processed products from Orgran she consumes frequently they are their animal cookies and breakfast cereal. The ingredients don't mention oats. I am clueless. Evev if she is super sensitive, what keeping her ttg levels from moving even a bit. They just don't want to move down.

Thanks

Nannu

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I am very symptomatic, and very sensitive. I did better grinding my spices at home, but better still when I grew them myself. I found that the taste of whole foods is good without too many spices when you get used to it.

Have you seen Tricia Thompsons study of gluten free grains? http://www.glutenfreedietitian.com/newsletter/contamination-of-naturally-guten-free-grains/

Many are contaminated. I ground my own grains, but only after sorting and washing first. Also, as someone suggested, the grinder might have cc. The first one I got had been tested with wheat. I sent it back and got another, which they tested with rice. That one was also cced., probably from being in the same room as all the ones getting tested with wheat. I had to run a lot of grain through it to get clean stuff. In hindsight, I should have taken it apart and cleaned it first, but I was afraid I wouldn't be able to get it back together.

You might want to try produce and meat for awhile and see if that helps. Does she have symptoms that you can use as a guideline? Have you checked soaps and toiletries? Pet food?

I hope you make progress. I know how hard it is to watch your child continue to be sick. My son is also very sensitive, and it has been a real struggle to get him symptom free.

Dear dilettantesteph,

Thanks al ton for so many suggestions. I will surely look into them though i feel i am doing almost everything you mentioned and no pets issues that i have. Will update once the next set of blood tests for anti endomysial antibody comes by tomorrow EOD. Till then, please pray.

Thanks again

Nannu

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Finally, i have the results of DD's EMA AB IGA :

ENDOMYSIAL ANTIBODY, IgA IN

DILUTIONS (IFA)

ENDOMYSIAL ANTIBODY Positive

TITRE 1:10 Positive

1:20 Weak Positive

1:40 Negative

anti TTG IGA - 296 (ref range 0-20). Is there a correlation between the two? Does the above suggest that the gluten antibodies may be reduced so only first titre is positive. We were able to speak to lab and they said they would be able to do anti gliadin AB test also on the same sample, so got saved of another prick. Lets see what comes out of those tests? My worry is that these antibodies (may be some of them) could be because of something else which should not remain undetected. I hope i am able to solve some part of the mystry by end of next week. Till then, any suggestions or thoughts would be very helpful.

Thanks a ton

Nannu

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Hi, Nannu

I think I tried to tell you this in your other thread. TTG and anti-EMA levels are not necessarily correlated. You would have to compare her EMA to a baseline EMA, preferably by the same technician becasue the test is read by hand. (Which is obviously well-nigh impossible to get; the non-quantitative nature of EMA is why TTG is used to monitor compliance.) The anti-EMA is 98% specific for celiac so it suggests her antibodies are still a result of gluten.

You might contact Orgran and see whether oats are handled in their facility and CC is a possibility.

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Hi, Nannu

I think I tried to tell you this in your other thread. TTG and anti-EMA levels are not necessarily correlated. You would have to compare her EMA to a baseline EMA, preferably by the same technician becasue the test is read by hand. (Which is obviously well-nigh impossible to get; the non-quantitative nature of EMA is why TTG is used to monitor compliance.) The anti-EMA is 98% specific for celiac so it suggests her antibodies are still a result of gluten.

You might contact Orgran and see whether oats are handled in their facility and CC is a possibility.

Hi Skylark,

Our biggest drawback at the time of diagnosis was that the best of doctors here in India conducted only TTG and no other blood test. Now, i don't have any other baseline readings for any other tests and right at that time we didn't know so much about celiac and all related testing. I was not expecting a 0 TTG but it should have reduced a little to give us a feel that we are doing things right. I agree with the celiac diagnosis but TTG doesn't go down at all. I will surely write to Orgran and get their confirmation about oats. Here, in India we don't get many gluten-free foreign products. Orgran is the only one and Dr Schar is just starting off. Their are many Indian brands available but already stopped using all of them after her first follow up testing when we became super strict. But, the results didn't change.

Skylark, thanks for all your inputs, i am sure one day i will have this mystry puzzle solved and i'll be able to write a happy post in this forum. Since the time my daughter has got diagnosed, this forum feels like a second home to me. I am so attached with it.

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I really hope you get things sorted out, Nannu. I'm glad the forum has been a source of support even if we can't help you figure things out. At least your daughter feels well and is growing. That's the really important thing!

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((((((hugs))))))

I am so sorry this is not working the way you are hoping. From one "not normal tTG but compliant" parent to another!

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Thank you so much Skylark and StephanieL. I do hope something comes out from anti gliadin tests which are awaited next friday. Will update after the results.

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Hi,

This is the reply i got from Orgran. I thought it would be worth posting it for our fellow celiacs.

"Thank you for your email inquiry. As oats contain gluten we do not use them in our products. We suggest you talk to your child

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Hello Everybody,

Finally the results are out. My DD's anti gliadin IGA are well within normal range (negative). We were delighted that at least gluten contamination issue is sorted out. But, our doctor said, she doesn't really consider AGA iga results as the test sensitivity is low and it is loosing importance nowadays. She has asked us to continue with the GFD the way we are going and retest anti TTG IGA in 6 months time. She is of the belief that if we are strict with the diet, the levels will come down one day, may be its taking longer.

Thanks a ton for your support during this tough fortnight of testing and waiting for reports and valuable suggestions as well.

Nannu

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