Higher Ttg Than At Diagnosis

[mattthom77]

It's been 4 months now since getting diagnosed and starting on the gluten-free diet.  When I first had the TTG blood test it came back as 33.  It's 4 months later, and I've still been having all the symptoms so I went back to the doctor and he did another TTG test and it came back 47.  He said that I've still been consuming gluten.  This shocked me because I have done so much reading and been very strict on my diet.  For the last month and a half I've not eaten out.  I've basically only eaten meats, vegetables, nuts, rice, and fruits.  My vitamins are all gluten-free, my toothpaste, shaving cream.  Two questions:  What does that 47 indicate?  And what hidden gluten could it possibly be?  Now I've tried to really up the bar on any possible cross-contamination, but the 47 seems high enough that I'm getting a gluten ingredient, not just some iota of cross-contamination on a rare occasion.  Is that true?  Also I was eating a lot of gluten-free processed products, and eating out when I first started on the gluten-free diet.  It seems like the 47 is high enough that I am still consuming gluten.  It seems like it wouldn't be so high if my stricter diet over the past month or two solved it.  I just want to feel better and get my life back as soon as possible.  Thanks for any help.

[GottaSki]

It's been 4 months now since getting diagnosed and starting on the gluten-free diet.  When I first had the TTG blood test it came back as 33.  It's 4 months later, and I've still been having all the symptoms so I went back to the doctor and he did another TTG test and it came back 47.  He said that I've still been consuming gluten.  This shocked me because I have done so much reading and been very strict on my diet.  For the last month and a half I've not eaten out.  I've basically only eaten meats, vegetables, nuts, rice, and fruits.  My vitamins are all gluten-free, my toothpaste, shaving cream.  Two questions:  What does that 47 indicate?  And what hidden gluten could it possibly be?  Now I've tried to really up the bar on any possible cross-contamination, but the 47 seems high enough that I'm getting a gluten ingredient, not just some iota of cross-contamination on a rare occasion.  Is that true?  Also I was eating a lot of gluten-free processed products, and eating out when I first started on the gluten-free diet.  It seems like the 47 is high enough that I am still consuming gluten.  It seems like it wouldn't be so high if my stricter diet over the past month or two solved it.  I just want to feel better and get my life back as soon as possible.  Thanks for any help.

 

Welcome!

 

Did the doctor run any of the other Celiac Antibody Tests?

 

The Deamidated Gliadin Peptide (DGP) - both IgA and IgG are most sensitive...they are the first to rise with gluten ingestion and the first to fall when completely gluten-free.

 

If you are being as careful as stated above -- I would carry on and wait another three months to test again.

 

Is your kitchen gluten-free?  If you are in a shared kitchen do make sure you are aware of all the places gluten can hid.  Here is a link for great info:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[cyclinglady]

I'm at a loss.  I hope someone else can help you. 

 

I've been gluten-free for over three months.  I only had abdominal symptoms that developed between my blood test and biopsy (yes, I ate a loaf of good bread a day, I kid you not!).  Those symptoms dissipated after six weeks.  Now, it's hard to tell if I get glutened which is dangerous since my initial  symptoms were only anemia and Hashimoto's Thyroiditis.   Having fractured a vertebrae (bone scan in two weeks), I'm worried that I'm not building bone despite all the supplements I'm taking.  Though I believe my anemia has been resolved, so that's a good sign.  So, I might very well be in the same boat as you!

[nvsmom]

It can take a while for the antibodies to turn off. It is not instantaneous as soon as gluten is cut out of your diet. If your body have been making tTG antibodies for a while, it may continue to do so for months yet. Some of the antibodies are in response to damage in the gut, so until the damage is gone, you might still have them... I know that seems crazy since tTG makes more damage but as long as you aren't eating gluten, and revving up those antibodies to high levels, it will slowly come down in most cases.

 

My tTG levels are pretty close to yours, but I have been gluten-free for over a year. we have to be patient.

 

tTG levels can also be elevated by diabetes, chronic liver disease, crohn's or colitis, as well as hashimotos thyroiditis. If you have any of these problems (I have thyroiditis) it could cause your tTG levels to stay higher than most people's, or to be slower to come down.

 

Keep doing what you are doing. Recheck your lables everytime you eat something (even if it is already opened) and you might find something that has slipped past you.  I know I had a slip-up at 6months gluten-free because I didn't re-read a label, it happens.

 

Best wishes.