Still testing positive for celiac disease after 2 years gluten-free

[Tory]

Can anyone provide feedback on my test results?

I tested positive for celiac disease 2 years ago and went on a gluten free diet. 

At beginning of 2014, my numbers were:

T-transglutaminase IgA 20.8, Gliadin IgG 42.7, Gliadin IgA 136, IgA antibodies Positive

At end of 2015, my numbers are;

T-transglutaminase IgA 23.2, Gliadin IgG 25, Gliadin IgA 15, IgA antibodies Negative

it makes sense that most numbers are coming down but why would the T-transglutaminase IgA number go up? And why are they still high?

(for reference, T-transglutaminase IgA >15 is high, Gliadin IgG >15 is high,  Gliadin IgA >15 is high)

i have also posted looking for recommendations for a doc who specializes in celiac disease in lower fairfield county! Thanks!

[cyclinglady]

Looks like you are still getting gluten into your diet.  ? Do you EVER eat out?  Do you read labels ever single time?  Are you checking all medications and supplements?  Do you contact manufacturers when buying foods that do not contain gluten, but could be prepared on shared lines?  Do you eat too many verified gluten free foods (it can add up)?  

It can take a year or longer to bring down antibodies even if you are super strict.  I got glutened in July of this year.  Have no clue (two suspected items) as to what glutened me.  I was diagnosed over two years ago and live and cooked for a gluten-free hubby, so I thought I knew the drill).  My GI tested me a month after my initial glutening symptoms appeared and my anti-bodies were sky high.  Took me three months to feel well and to get dairy back (Yep, I lost it too! )  So, a glutening can cause a huge celiac flare-up.  We have to remember that celiac disease is an autoimmune disorder.  Oh, after that last glutening?  I get hives all the time!  ?

I hope you figure it out.

[Tory]

Thanks for your feedback.....it's really helpful. My IgA antibodies coming back negative in the last test, is a good thing right? Even though my other numbers were still too high. I'm looking for a GI or celiac doc in Fairfield county to help explain my test results and guide me through this journey....would appreciate any recommendations! Many thanks

[Gemini]

2 hours ago, Tory said:

Thanks for your feedback.....it's really helpful. My IgA antibodies coming back negative in the last test, is a good thing right? Even though my other numbers were still too high. I'm looking for a GI or celiac doc in Fairfield county to help explain my test results and guide me through this journey....would appreciate any recommendations! Many thanks

Yes, it is a good thing regarding your IgA antibodies!  However, even though they came down dramatically since diagnosis, the Glaidin IgA number is the one that you eventually want to see as low as possible, as that tests for reaction to the gluten you may be consuming in your diet.  If the normal range is <15, then you want to shoot for a less than 5 number...eventually, when more healing occurs and you become an expert on the diet. Make note that it is not required for it to be a zero as that is generally not possible for most people to achieve. But anything less than a 15 and your immune system will not respond to such a small amount.

Since it is your tTg that has remained stubbornly and slightly out of range, you should be screened for other autoimmune diseases that occur frequently with Celiac.  Certain other diseases, such as Type 1 diabetes, thyroid disease or liver disease to name a few, can elevate your tTg slightly as the tissue in the organs related to these diseases may be under attack and that would show on the tTg testing.  I have Hashi's thyroid disease along with Celiac and it took me a couple of years before my tTg slid to  a low negative after diagnosis of Celiac. It hovered in a high normal range for longer than my others ever did. So, it may be that you are not ingesting any gluten but you have something else going on. If you were ingesting enough gluten to keep your tTg in the high range, you would most likely have tripped positive on the Gliadin testing.  Does this make sense to you?

[Tory]

That all makes a lot of sense....THANK YOU! I didn't realize how helpful this forum could be! I feel like I've been struggling through this lost, clueless and unsupported so this feedback is great! Now all I need to do is find me a doctor in Connecticut who can help!

[cyclinglady]

Sorry!  I did not have access to the site for the last few days, but I am happy that Gemini offered some great advice! ?

You are right, Tory, this is a great site for support.  

[StephanieL]

Were all the labs done at the same place?  I have found HUGE differences if they are run at different facilities.