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CarolineE

HELP! Transglutaminase 6 years later still not normal!

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I was diagnosed as Celiac in 2011 by a blood test that showed my  transglutaminase levels were so high that the exceeded the measuring scale.  I went on a gluten free diet and my levels started to come back down and a year later they reached 35.  I have tested my levels over the last 5 years and it has not moved from 35!!  I have read and reread all the food that I buy.  Most processed ones are labelled as gluten free as well.  I am not sure what I am doing wrong or if I should accept that is "my normal"??  Is that possible?  Or should it return to normal???

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16 minutes ago, CarolineE said:

I was diagnosed as Celiac in 2011 by a blood test that showed my  transglutaminase levels were so high that the exceeded the measuring scale.  I went on a gluten free diet and my levels started to come back down and a year later they reached 35.  I have tested my levels over the last 5 years and it has not moved from 35!!  I have read and reread all the food that I buy.  Most processed ones are labelled as gluten free as well.  I am not sure what I am doing wrong or if I should accept that is "my normal"??  Is that possible?  Or should it return to normal???

Lower level positives can be from other problems.  

 

http://www.cureceliacdisease.org/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet/

 

"...this may simply mean, especially with low titers, that it’s falsely elevated—common in patients who have other autoimmune conditions, such as chronic liver disease, Type 1 Diabetes, Crohn’s Disease or thyroiditis..."

 

Maybe get them to run the DGP-IgG?  Seems like  if that was negative - it isn't a gluten issue?

http://www.cureceliacdisease.org/faq/in-follow-up-blood-testing-why-would-ttg-be-negative-and-dgp-be-positive/

 

 "...If the DGP-IgG is positive it probably means you’re ingesting small amounts of gluten, possibly from cross-contamination, which are raising antibodies but not enough to trigger a tTG or a mucosal response. ..."

Edited by kareng

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http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2009.04039.x/full

Thought you might like this study done on Celiac patients concerning anti-tissue transglutaminase levels.  They conclude high anti-tissue transglutaminase levels may be due to gluten still in the diet, iron deficiency, or abnormal duodenal histology.  

Getting really strict about one's gluten free diet may include excluding all processed foods.  I had to remove dairy, corn, soy and potatoes (all nightshades actually), because they can cause intestinal damage and inflammation, too.  These are often found in processed gluten free foods.  Microbial transglutaminase (aka meat glue) is an additive commonly used in gluten free bakery and dairy products to improve texture (as well as in formed meat, like sausage), and will cause damage.  

https://www.ncbi.nlm.nih.gov/pubmed/27640315

Vitamin and mineral deficiencies are common in Celiacs.  Iron, as well as B12, vitamins A and D, folate, and calcium are often low.     

Diet changes and correction of nutritional deficiencies may resolve the problem.  Let's hope that's all that's needed to see health improvement.  

Hope this helps

 

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Hi

I know it is very frustrating and confusing when the Anti-TTG number do not goes down. when i was diagnosed my TTG count did not go down for 1st month even after taking all precaution and then I changed few things and it came down from 90 to 1 which is a normal range. I hope this things might helps you.

1) please cut down all the processed foods and milk for next 3 months . do not consume any packed or processed food even if it is labelled Gluten free.

2) Eat lots of fruits, Vegetables and whole grains. Used Gluten free flour such as sorghum, Millet, Amaranth for making foods and breads. if possible processed the flour at home using whole grains.

3) Add potatoes, tapioca, rice to your meals to keep you stuffed for whole day. Brown rice is better than the regular one

4) Last and most important do not cheat yourself.

5) Do not use any sause and ketchup since most of them contain starch gluten in it

It will be bit difficult initially and later you will get used to it. Try this for 3 months and get you blood tested. 

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