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kelzz

TTG IGA follow-up test still high

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Hi, I am hoping someone can offer some advice.  I originally had a TTG IGA positive test.  The number was 17.1.  I was eating a lot of gluten back then.  I had a biopsy, confirmed celiac disease, and have carefully been following a gluten free diet.  I replaced my pots and pans, avoid cross-contamination, and only buy products that say gluten free on them.  I don't eat out and I have been seeing a dietician and following their advice carefully.  I never had many physical symptoms, so I can't really say they have gotten better.

Today I got the results of my follow-up test after being gluten free for 7 month, and my number is now 41.4.  I don't understand how the number has more than doubled.  I have triple checked everything and can't see how I could possibly be getting any gluten in my diet, let alone enough to have the number increase so much.  

Has anyone else had this happen?  Could it be a lab error?  Could something else be affecting the blood test?  The doctor basically just said to do better on my gluten-free diet and they would test again in six months.  The problem is, I don't know what I can improve!

Thanks for any and all advice! 

 

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46 minutes ago, kelzz said:

Hi, I am hoping someone can offer some advice.  I originally had a TTG IGA positive test.  The number was 17.1.  I was eating a lot of gluten back then.  I had a biopsy, confirmed celiac disease, and have carefully been following a gluten free diet.  I replaced my pots and pans, avoid cross-contamination, and only buy products that say gluten free on them.  I don't eat out and I have been seeing a dietician and following their advice carefully.  I never had many physical symptoms, so I can't really say they have gotten better.

Today I got the results of my follow-up test after being gluten free for 7 month, and my number is now 41.4.  I don't understand how the number has more than doubled.  I have triple checked everything and can't see how I could possibly be getting any gluten in my diet, let alone enough to have the number increase so much.  

Has anyone else had this happen?  Could it be a lab error?  Could something else be affecting the blood test?  The doctor basically just said to do better on my gluten-free diet and they would test again in six months.  The problem is, I don't know what I can improve!

Thanks for any and all advice! 

 

Is it from the same lab? On the same scale?   

 

Assuming it is ....let's not panic.  Antibodies can go up for a few weeks, at the start of gluten-free.  So that might account for a small amount.    You may need to get super strict about your gluten-free diet for a few months - no eating out, no eating what other make, no really processed foods, .... eating only simple foods.  maybe check the " gluten elimination diet" / " fasano diet".  It may be there is some gluten in there you don't see.  I have seen people swear they were strictly gluten-free but not realize soy sauce or corn flakes had gluten.

Edited by kareng
Abominable typing skills

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10 minutes ago, kareng said:

Is it from the same lab? On the same scale?   

 

Assuming it is ....let's not panic.  Antibodies can go up for a few weeks, at the start of gluten-free.  Somthta might account for a small amount.    You may need to get super strict about your gluten-free diet for a few months - no eating out, no eating what other make, no really processed foods, .... eating only simple foods.  maybe check the " gluten elimination diet" / " fasano diet".  It may be there is some gluten in there you don't see.  I have seen people swear they were strictly gluten-free but not realize soy sauce or corn flakes had gluten.

I'm not sure if the same lab was used, but it was the same scale.  

I already don't eat out (no safe options near me) and I make sure everything I buy that is processed says "Gluten free" on it.  I am considering cutting out all processed foods next, but that is a big step.

Thanks for your response!

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are you avoiding oats aswell?

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I will flat out say I have no experience with this. But I do have experience with blood showing results after my body already knows something, like a delay. I had some funky heart issues last year and was in the ER, my magnesium and potassium were fine. My doc even commented on it when he saw me 6 days later and re-ran the tests... and they came back low. 

When I was gluten free I helped myself to a glass of my boyfriend's probiotic juice, mango I think. 

Freaking barley malt. In juice! 

Gluten is sneaky. 

 

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Your TTG can go up instead of down in 7 months.  The most likely reason is due to a gluten exposure. The learning curve on the gluten-free diet is steep.  Really steep.  You can try to figure out the source, but you might not find it.  That is okay.  

I was anemic (no gut issues) when I was diagnosed.  Hubby had been Gluten free for 12 years, so I knew the drill.  Somehow, I was glutened a year or so after my diagnosis.   I suspected two products  that hubby never touched, but there is no way to prove my theory and I am not testing it!  My symptoms were so severe and lasting.  I was sure that Gluten was not to blame.   I asked my GI to test before investigating any other causes.  My antibody results were off the charts.  Way higher than when I was diagnosed.  

In any case, you are still new to the diet and healing.  I know, 7 months seems like a long time, but it really is not.  You are still a newbie.  

Just keep moving forward!  

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Hi kelzz..........the only way you will find out if the increase is from gluten exposure is to have your doctor run the correct test.  I have said this a million times on this forum but I will say it again.....the DGP/IgA tests for reaction to gluten ingested. The tTg/IgA tests for intestinal damage and that can be elevated from other autoimmune diseases, or from ingested gluten.  So you are either being glutened in sneaky ways OR you may have another autoimmune issue going on. Sorry my answer is so late but I have been on vacation.

I hope this information helps you!

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