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Tissue Transglutaminase Ab IgA Retesting


Svelte

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Svelte Apprentice

About 8 months ago I was tested for Tissue Transglutaminase Ab IgA and scored over 250.  I still have been having problems so I asked to be retested yesterday and scored 22.3, which is still higher than the 12 that they compared too check if you have celiac disease.  Does this mean gluten is likely still getting into my diet?  I think I've been very thorough removing gluten, checking things like lip balm and others.  I've basically been following Dr. Gundry's Plant paradox diet, with no lectins, no sugar and no antibiotics.  The food I don't make myself is things like Dark Chocolate and a few sauces like a gluten free ranch dressing I'm using, so I was a bit surprised to find out I was still over range on this test.  The only other place I can be getting gluten is from medications like Tylenol.  Does anyone have any experience with retesting results?  Maybe it just takes a long time for the scores to go down?  My diet is already very restricted, so I'm reluctant to reduce it even more if my score doesn't likely mean I am still getting gluten in my diet somehow.


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AngieDoPa Newbie
18 minutes ago, Svelte said:

About 8 months ago I was tested for Tissue Transglutaminase Ab IgA and scored over 250.  I still have been having problems so I asked to be retested yesterday and scored 22.3, which is still higher than the 12 that they compared too check if you have celiac disease.  Does this mean gluten is likely still getting into my diet?  I think I've been very thorough removing gluten, checking things like lip balm and others.  I've basically been following Dr. Gundry's Plant paradox diet, with no lectins, no sugar and no antibiotics.  The food I don't make myself is things like Dark Chocolate and a few sauces like a gluten free ranch dressing I'm using, so I was a bit surprised to find out I was still over range on this test.  The only other place I can be getting gluten is from medications like Tylenol.  Does anyone have any experience with retesting results?  Maybe it just takes a long time for the scores to go down?  My diet is already very restricted, so I'm reluctant to reduce it even more if my score doesn't likely mean I am still getting gluten in my diet somehow.

It took a full year for my number to lower into the normal range. 

cyclinglady Grand Master

It can take a year or longer for antibodies to normalize.  So, it sounds like you are on the right track.  Remember, the antibodies testing was designed to help diagnose celiac disease.  It was never meant to check for dietary compliance.  However, it is the only non-evasive “tool-in-the-toolbox”, so doctors use it.  

Svelte Apprentice

OK thanks a lot.  I was a bit worried.  They recommend that they should be rechecked once in the first 3-6 months and then after a year and yearly after that, so I was concerned that maybe they were supposed to go to normal after 3-6 months. 

cyclinglady Grand Master

Doctors are just looking for a downward trend at the 3 to 6 month mark.  I can tell you that my DGP IgA was very elevated when I had a repeat endoscopy/biopsies that revealed healthy villi.  My GI was as perplexed as me.  So, use it a just one tool.  Look at other health markers (e.g. in my case, hemoglobin) or vitamin/mineral deficiencies or how you feel  to help you determine your healing.  

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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