Transglutaminase IgA never under 20

[MidBaker]

Both of my sons (7 and 8) were diagnosed three and a half years ago.  We removed gluten completely from our home, including remodeling the kitchen, dining room, and living room.  Replaced all dishes, pans, etc...  We test things from time to time to makes sure no CC happens.  Husband and I even eat gluten free outside the home so we don't bring home any crumbs.  Sons have not eaten out in over three years.  Youngest has all bloodwork come back to normal/safe ranges.  Oldest still has never had Transglutaminase IgA get below 20.  Had another endoscopy done in March and intestines/villi all healed.  He had complete atrophy at time of diagnosis.  GI says he's not getting glutened, but no explanation for his high TTG.  We went the alternative medicine route for the last year, eliminated quite a bit, including gluten free oats, hoping for a reset for his body.  It didn't help bring down his numbers.  Only buy products, food and supplements, that are made in gluten free facilities, or have safe practices to prevent CC.  Very little processed food in general.   

 

His March bloodwork showed his TTG IgA was at 43.3.  At time of diagnosis it was >235.10.  He has been tested every 3-6 months since diagnosis.  

Has done T4, free twice, first in 2016 - 1.1, second this past March - 1.4.  TSH in 2016 - 2.273, March - 1.826. 

No deficiencies except Vitamin D, so he is back on a supplement.

Random glucose test in good range - 86mg

 

So my question is... what could be causing his IgA to not come down?  I've read on here people suggest thyroid and diabetes issues, but he gets tested for that as you see above.  

[kareng]

20 minutes ago, MidBaker said:

Both of my sons (7 and 8) were diagnosed three and a half years ago.  We removed gluten completely from our home, including remodeling the kitchen, dining room, and living room.  Replaced all dishes, pans, etc...  We test things from time to time to makes sure no CC happens.  Husband and I even eat gluten free outside the home so we don't bring home any crumbs.  Sons have not eaten out in over three years.  Youngest has all bloodwork come back to normal/safe ranges.  Oldest still has never had Transglutaminase IgA get below 20.  Had another endoscopy done in March and intestines/villi all healed.  He had complete atrophy at time of diagnosis.  GI says he's not getting glutened, but no explanation for his high TTG.  We went the alternative medicine route for the last year, eliminated quite a bit, including gluten free oats, hoping for a reset for his body.  It didn't help bring down his numbers.  Only buy products, food and supplements, that are made in gluten free facilities, or have safe practices to prevent CC.  Very little processed food in general.   

 

His March bloodwork showed his TTG IgA was at 43.3.  At time of diagnosis it was >235.10.  He has been tested every 3-6 months since diagnosis.  

Has done T4, free twice, first in 2016 - 1.1, second this past March - 1.4.  TSH in 2016 - 2.273, March - 1.826. 

No deficiencies except Vitamin D, so he is back on a supplement.

Random glucose test in good range - 86mg

 

So my question is... what could be causing his IgA to not come down?  I've read on here people suggest thyroid and diabetes issues, but he gets tested for that as you see above.  

There are other reasons it could be slightly elevated. 

Or its possible he is getting gluten at school or friends houses occasionally?  Might not have a lot of damage, so it might have been missed on an endo.

 

[MidBaker]

They don't go to friends' houses without me yet.  There isn't really a chance in school either.  The school is wonderful to work with and is very careful.  I go in to double check things as well.  They have new placemats in the lunch room every day.  Along with manila folders cut in half to be used as "walls" to block them from getting crumbs from friends.  We replace their lunch boxes once a month and use as much disposable items as possible.

[Gemini]

He should be screened for all other AI diseases associated with Celiac because the range he is stuck in would be the range you see with other AI diseases. He could have one brewing that isn't bad enough to create symptoms yet. 

Also, the doctor should be running his DGP test, along with the tTg, because it is erroneous to use the tTg only for compliance reasons.  They make this mistake all the time.  The DGP will actually show if he is ingesting gluten.  Using the endo alone is dumb because they could easily have missed damage.

[kareng]

Is it going down every time it is tested?  Maybe he is just one of the slow ones?  Is his DGP IGA also high?  That would represent that he is getting some gluten.

You could look into the Fasano diet.  

[MidBaker]

From what I can find in his tests, he has never had the DGP test before.  I will be asking his GI about that.  The issue though, is that we are certain he is not ingesting gluten, so what else could I ask for him to be tested for?  Or do I just have to wait for something to happen.  

[MidBaker]

11 minutes ago, kareng said:

Is it going down every time it is tested?  Maybe he is just one of the slow ones?  Is his DGP IGA also high?  That would represent that he is getting some gluten.

You could look into the Fasano diet.  

It hasn't consistently gone down.  One of his GIs said this might be his normal levels, especially since there didn't show anymore damage and we have gone through our lifestyle and foods with a fine tooth comb.

His results...

10/14 - >235.10,

6/15 - 75.5,

2/16 - 46.2,

8/16 - 49.7,

12/16 - 40.3,

3/17 - 53.5,

9/17 - 33.9,

3/18 - 43.3

 

We have looked into the Fasano Diet and that's pretty much what we have done for the last year through the supervision of a couples doctors and a dietician.

[MidBaker]

17 minutes ago, Gemini said:

He should be screened for all other AI diseases associated with Celiac because the range he is stuck in would be the range you see with other AI diseases. He could have one brewing that isn't bad enough to create symptoms yet. 

Also, the doctor should be running his DGP test, along with the tTg, because it is erroneous to use the tTg only for compliance reasons.  They make this mistake all the time.  The DGP will actually show if he is ingesting gluten.  Using the endo alone is dumb because they could easily have missed damage.

What other AI diseases should I ask about?  That's where I'm stuck.  We aren't concerned about compliance.  We are extremely strict and vigilant.    We believe something else is going on in his body, we just don't know where to look anymore.  

[kareng]

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[MidBaker]

9 minutes ago, kareng said:

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Thank you

[cyclinglady]

The celiac antibodies tests are good, but they are not perfect.  It is one reason why celiac experts still rely on the endoscopy to obtain biopsies for a firm diagnosis.  But they were never designed for follow-up testing.  In order to avoid frequent repeat biopsies (less face it, it is invasive and expensive), doctors rely on the only non-evasive tools in the toolbox — repeat antibodies testing and patient symptom reduction.  Again, not perfect.

Your son had had a repeat biopsy and he has healed!  That is terrific news!  You and your family are doing a fantastic job!  

I know that TTG is really bothering you.  So, I will share my story.  I never even tested positive ever on the TTG (only DGP IgA), but my initial biopsies revealed a Marsh Stage IIIB.  I had Hashimoto’s Thyroiditis for years and was anemic (iron) which resolved within a few months on the gluten free diet.  During the last five years, I have experienced three glutenings and my symptoms were varied and lasted for months.  I confirmed my glutenings by having my antibodies repeated and they were elevated (only the DGP IgA).

In January 2017, I had another gluten exposure (who knows what the source was) and at the same time I had three rounds of antibiotics for a old root canal gone bad, caught the flu, and later a cold all within a month.    During that time I was very sick.  I developed autoimmune hives.  I saw an allergist, my PCP and my GI.  My DGP IgA antibodies were off the chart as well as my thyroid antibodies. My GI wanted to do a repeat endoscopy, but I declined.  By summer, I told him that I would try the Fasano diet (no processed).  It did not work.  In December, My DGP IGA was still elevated, but at least the lab could read a number!  I was so disheartened.  Where was the Gluten coming from?  My hives pretty much resolved after six months,but why was my gut hurting?  I caved in and got the endoscopy in January.  

The scope revealed healthy villi as did my small intestinal biopsies.  My GI went in very deep and took pictures.  My stomach biopsy however,  revealed Chronic Autoimmune Gastritis which is not related at all to my celiac disease (meaning the gluten-free Diet was not going to solve this one).  So, I was not going crazy! I was not a non-responsive celiac nor did I have refractory celiac disease!  

Back to your son.  Your PCP should run antibodies tests on the thyroid.  Why?  It can be under attack but the thyroid could still be working.  What are you going to do if he has elevated thyroid antibodies?  Probably, nothing until the rest of his thyroid panel goes out of wack.  So, it is up to you to decide if you want to pursue thyroid autoimmune testing.   The TTG, like Gemini has stated can be elevated due to other autoimmune disorders or illnesses (like LYME if I recall correctly) that might be brewing or not.  Who knows?  You can just keep your eye on it.  In reality, there is not much you can do if he is not displaying any symptoms and you sure do not want any drugs to suppress his immune system unless you know he has a definitive autoimmune disease or another illness. 

Just move forward.  Keep up the good work!  Both your sons are lucky to have such supportive parents!  

 

[MidBaker]

25 minutes ago, cyclinglady said:

The celiac antibodies tests are good, but they are not perfect.  It is one reason why celiac experts still rely on the endoscopy to obtain biopsies for a firm diagnosis.  But they were never designed for follow-up testing.  In order to avoid frequent repeat biopsies (less face it, it is invasive and expensive), doctors rely on the only non-evasive tools in the toolbox — repeat antibodies testing and patient symptom reduction.  Again, not perfect.

Your son had had a repeat biopsy and he has healed!  That is terrific news!  You and your family are doing a fantastic job!  

I know that TTG is really bothering you.  So, I will share my story.  I never even tested positive ever on the TTG (only DGP IgA), but my initial biopsies revealed a Marsh Stage IIIB.  I had Hashimoto’s Thyroiditis for years and was anemic (iron) which resolved within a few months on the gluten free diet.  During the last five years, I have experienced three glutenings and my symptoms were varied and lasted for months.  I confirmed my glutenings by having my antibodies repeated and they were elevated (only the DGP IgA).

In January 2017, I had another gluten exposure (who knows what the source was) and at the same time I had three rounds of antibiotics for a old root canal gone bad, caught the flu, and later a cold all within a month.    During that time I was very sick.  I developed autoimmune hives.  I saw an allergist, my PCP and my GI.  My DGP IgA antibodies were off the chart as well as my thyroid antibodies. My GI wanted to do a repeat endoscopy, but I declined.  By summer, I told him that I would try the Fasano diet (no processed).  It did not work.  In December, My DGP IGA was still elevated, but at least the lab could read a number!  I was so disheartened.  Where was the Gluten coming from?  My hives pretty much resolved after six months,but why was my gut hurting?  I caved in and got the endoscopy in January.  

The scope revealed healthy villi as did my small intestinal biopsies.  My GI went in very deep and took pictures.  My stomach biopsy however,  revealed Chronic Autoimmune Gastritis which is not related at all to my celiac disease (meaning the gluten-free Diet was not going to solve this one).  So, I was not going crazy! I was not a non-responsive celiac nor did I have refractory celiac disease!  

Back to your son.  Your PCP should run antibodies tests on the thyroid.  Why?  It can be under attack but the thyroid could still be working.  What are you going to do if he has elevated thyroid antibodies?  Probably, nothing until the rest of his thyroid panel goes out of wack.  So, it is up to you to decide if you want to pursue thyroid autoimmune testing.   The TTG, like Gemini has stated can be elevated due to other autoimmune disorders or illnesses (like LYME if I recall correctly) that might be brewing or not.  Who knows?  You can just keep your eye on it.  In reality, there is not much you can do if he is not displaying any symptoms and you sure do not want any drugs to suppress his immune system unless you know he has a definitive autoimmune disease or another illness. 

Just move forward.  Keep up the good work!  Both your sons are lucky to have such supportive parents!  

 

Thank you for sharing your story.  Yes, his TTG really bothers me for many reasons, more than would be appropriate for this particular thread.  I didn't think about Lyme, I'll definitely ask the doctor about that.  You are right, I don't want to put him on any drugs unless absolutely necessary.  I just want to know what I'm looking for and what to keep an eye on.