Question on Transglutaminase test

[garys-pdx]

Hi, 

I'm new to this celiac thing so I'm still feeling my way around and asking silly questions so I'm hoping someone here can answer a couple of questions on the Transglutaminase test.

I was diagnosed with celiac just before Christmas last year, Transglutaminase > 250. The test explanation said that if healthy my number should be less than 15. I have religiously avoided gluten since the day that I got my test results. Last week my doctor did a new panel of blood tests to see how my anemia was progressing and included another Transglutaminase test. 

My new test came in at ~52.

This brought up a few questions:

1) If you have celiac is it possible to ever get your Transglutaminase numbers below 15? If so how long does it take? I've been avoiding gluten for over four months and had hoped that suffering through a gluten free diet would have lowered my number below 15.

2) Can anyone tell me what scale the Transglutaminase test uses, linear, log...?

3) Can anyone refer me to any articles on what causes the onset of celiac? I'm 68 years old and have never had any symptoms of celiac. Even now the only reason that I was diagnosed with celiac was finding out why I had severe anemia. I have never had any of the obvious symptoms of bloating, diarrhea... Any references would be appreciated.

I would never have believed that I had celiac if it hadn't been for the endoscope biopsy and Transglutaminase test results and the fact that eliminating gluten from my diet has made a night and day difference in how I feel.

Thanks in advance.

gary

[cyclinglady]

Congrats on lowering your TTG so fast!  It can take a year or longer for test results to hit normal range.  Everyone heals at a different rate.  

Celiac disease is genetic.  It is the only autoimmune disorder that has a FOR SURE a genetic link (more than 30% of the population carries the genes).  But know one knows what triggers the autoimmune response to gluten.  Lots of theories, like stress, an illness, etc.  

Anemia was my symptom too.    I was shocked that I was diagnosed with celiac disease.  I had no GI issues at the time.  I was diagnosed at age 51.  Good catch by my GI during a colonoscopy consult.  

Sorry, but I can not answer question number 2.  I can tell you that the actual TTG result does not always correlate with intestinal damage.  

Most around here take a year or longer to heal, not just the gut, but systemic issues resulting from undiagnosed celiac disease.  

Glad you are feeling better!  

[RMJ]

I'll answer question 2.  Linear.  Linearity is one of the things FDA looks at with such tests prior to approval.  

[Fbmb]

On 5/2/2017 at 2:45 PM, garys-pdx said:

Hi, 

I'm new to this celiac thing so I'm still feeling my way around and asking silly questions so I'm hoping someone here can answer a couple of questions on the Transglutaminase test.

I was diagnosed with celiac just before Christmas last year, Transglutaminase > 250. The test explanation said that if healthy my number should be less than 15. I have religiously avoided gluten since the day that I got my test results. Last week my doctor did a new panel of blood tests to see how my anemia was progressing and included another Transglutaminase test. 

My new test came in at ~52.

This brought up a few questions:

1) If you have celiac is it possible to ever get your Transglutaminase numbers below 15? If so how long does it take? I've been avoiding gluten for over four months and had hoped that suffering through a gluten free diet would have lowered my number below 15.

2) Can anyone tell me what scale the Transglutaminase test uses, linear, log...?

3) Can anyone refer me to any articles on what causes the onset of celiac? I'm 68 years old and have never had any symptoms of celiac. Even now the only reason that I was diagnosed with celiac was finding out why I had severe anemia. I have never had any of the obvious symptoms of bloating, diarrhea... Any references would be appreciated.

I would never have believed that I had celiac if it hadn't been for the endoscope biopsy and Transglutaminase test results and the fact that eliminating gluten from my diet has made a night and day difference in how I feel.

Thanks in advance.

gary

Hi Gary!

my TTG was high like yours. The lab I used topped out at 100, so I only know that my number was ">100". That's high. Obviously. I had my biopsy a month later and immediately went gluten free after that. That was November 8. On January 17 I had the TTG done again as a follow up for my GI appointment and it was 12. My doctor was like "Whoa. That's significant, and a clear indication that you are understanding your diet." I was happy. But even then, my symptoms hadn't left totally. In fact, I still have bad days even when I know I haven't had gluten. I was marsh stage 3b when I was diagnosed, and even though I'm young (29) I know that it's going to take my poor intestines some time to heal. I think that I am an anomaly. I don't think it's typical for those numbers to crash like that. I've read that translutaminase has a 6 month half life and that it can take 6 months for it to go down by half. So theoretically that would mean at 6 months you'd see something around 125 and that's typical. I think you have had a pretty significant drop in your numbers, to be honest.

as for not knowing you had this pain in the rear disorder. I didn't either. It's rampant in my family, as are other autoimmune disorders, but I never thought I had celiac. I always battled my weight. I'm female and 5'5 and I couldn't lose weight to save my life. I had to work so hard. My uncle has celiac and is a string bean, so I dismissed it for me. I've always had good skin. Never had rashes. My aunt gets rashes. So I dismissed it. My stools have never been "regular" but I never had chronic diarrhea. Everyone I knew with celiac had that. My friend had bloody stools even. She was so sick. Then in September I got a stomach bug from a friend's baby shower and it just wouldn't quit. I have health anxiety and I started panicking. Finally about 3 weeks into this my aunt (has celiac) suggested I go get tested. I went to my local health fair to get blood drawn because I was planning my funeral at that point and I threw in the TTG, just because. I was blown away. And shockingly, aside from being low in vitamin d, I have never had any other issues. Iron was normal. Thyroid normal. I had 2 babies and pregnancies were great (and my 3 yr old has celiac too by the way). My body did a great job of compensating. I believe that those 3 weeks in September were the beginning of my symptoms and luckily I just knew to get checked for it. My doctor never suggested that so I can see how people who don't know to get checked can go years like that before a diagnosis. 

Since November I have stopped battling my weight. I've lost 17 lbs without trying. I'm tired a lot but I think that's because I have two little ones and a full time job.