Ttg Iga levels still so high

[Penny80]

Hi there

So I had my yearly blood tests done and got the results today.  A year ago I was diagnosed via gastroscope (mt GP sent me straight to have teh scope I didnt even have bloods done thats how sure she was I had it) - the dr came out and basically told me straight away I had celiac disease as could see total villous atrophy.  So anyway one year later and even though my iron, liver, B12, zinc etc levels are looking ok now, my Ttg iga levels were really really elevated.  Dr said I must be getting some cross contamination form somewhere.  I know I was glutened the week I had teh blood test - no idea what from but I wasn't well - I feel fine this week.  If i was to have a test now would my levels be looking in better shape? Or as they so high because I had so much damage initially? Can being glutened make these levels not an accurate representation of healing?

Hope this all makes sense.   I'm just disheartened because I've been so stringent about gluten all year and take no chances.  Although I guess I don't know what my original gluten antibodies were so maybe even this level is better than before....:(

[cyclinglady]

I think you are right.  Your TTG could have been way more elevated at the time of your diagnosis.  My own lab only measures anything less than 100. 

The TTG can take a long time to come down (a year or longer).  Why?  Most often is is due to gluten exposures or it can be due to other AI issues.   The learning curve for the diet can be steep.  In my opinion, just swapping out traditional junk food for gluten-free junk food is not good for someone who has a serious illness.  Keep to the gluten-free diet and avoid taking risks.  The times I have been glutened have occurred when I have  eaten out.  I stick to dedicated gluten-free restaurants now or those that get excellent reviews from celiacs.  

Now...just for the future, I will share my story.  Two years ago, I had a gluten exposure, the flu, a cold and a tooth infection all in a matter of weeks.  I only test positve to the DGP IgA and it was over 100 (off the lab charts) after those recent illnesses and possibly my antibiotics (no proof).  Besides GI issues, I developed daily hives that lasted six months.  I went  on a strict “Dr. Fasano” diet for a few months once my hives resolved in an attempt to deal with my New GERD symptoms.  Mind you,  my DGP IgA was still very elevated.   A year later from that initial glutening, I agreed to repeat biopsies.  My small intestine had healed but I had developed Chronic Autoimmune Gastritis.  Studies have shown that the celiac antibodies tests are helpful for diagnosing celiac disease, but not always for dietary compliance.   So, not everything is due to active celiac disease.  Do not let you or your doctors place that single label on yourself! 

Did I mention that my thyroid antibodies were whacked out at the time of my hives?  My theory (and my doctors) is that if I trigger my celiac disease with a gluten exposure, it sets off a cascade of other autoimmune issues.  

Keep up the good work.  Do not beat yourself up and wait for that next TTG test.  Okay, it is not the best tool in the toolbox as I have stated, but it is the only non-invasive test we have.  

Hang in there.  

[steve007]

hi,  I was wondering about the blood test numbers and what they mean and how long it takes them to come down to 20,, if ever they come to normal ?  mine was 160 on blood test,,   confirmed celiac on scope a few months later..  anyone have any idea  if the numbers decrease at what rate once on the gluten-free diet ?  ty

[cyclinglady]

2 hours ago, steve007 said:

hi,  I was wondering about the blood test numbers and what they mean and how long it takes them to come down to 20,, if ever they come to normal ?  mine was 160 on blood test,,   confirmed celiac on scope a few months later..  anyone have any idea  if the numbers decrease at what rate once on the gluten-free diet ?  ty

As long as they are going down, you should be happy.  The celiac blood tests were meant to help diagnose celiac disease, but not to monitor the gluten-free diet.  However, it is the only non-evasive “tool in the toolbox” for now.  You can expect for those numbers to take a year or so to come down.  It all depends on how well you do on the diet and how your body responds.  Everyone is different!  

Welcome tomthe forum.