Over A Year Out And Still Highly Elevated Ttg Iga =(

[megsybeth]

I've never cheated, I think I'm pretty knowledgeable about what I eat. I'm not super strict about possible CC outside the home, for example at chipotle I don't usually ask them to change gloves, because I've found my son (more sensitive) and I both are symptom free. But I limit how often I eat out and only have a certain list of places, I kind of go with my gut about if they really know what they're doing (pun intended =)).

 

My first bloodwork was done at a quest but I had a strong positive on all markers. I've since done follow-ups at UCSD which has good labs and I see a celiac specialist there.

 

My TTG IGA results have been:

 

Sept., 2012, strong positive but don't have numbers, went gluten free immediately because I was breast feeding

 

dard Range

1/28/13 5/1/13 9/20/13   Endomysial Ab, IGA Titer

<1:10

1:20 H <1:10 <1:10   TTG IgA Ab

0 - 19 Units

94 H 49 H 45 H

 

I also have consistently had elevated white blood cells. Have to see GI for follow-up, she thinks it might be another AI disease. Also mentioned maybe needing to go back in for another endoscopy. I'm worried about what else might be. Any btdt?

 

-Megan

[kareng]

I've never cheated, I think I'm pretty knowledgeable about what I eat. I'm not super strict about possible CC outside the home, for example at chipotle I don't usually ask them to change gloves, because I've found my son (more sensitive) and I both are symptom free. But I limit how often I eat out and only have a certain list of places, I kind of go with my gut about if they really know what they're doing (pun intended =)).

-Megan

Sounds like you should worry about cc when you eat out. If you are still making antibodies, maybe you should stop eating out? Re- check what you eat at home? Medications? Vitamins?

Just because you don't feel the damage, the gluten is still damaging you.

[w8in4dave]

Yea wow so sorry!! Yup if my levels were high after a year, I'd quit eating out. Just has to be hidden Gluten somewhere! If it is not at your house then .. It has to be from eating out. 

[nvsmom]

Levels can stay high for a long time but it is strange that the tTG IgA is still so high. My own tTG IgA was elevated at over a year gluten-free too but there was a definite downward trend from over 200 to a 20 point something ( my range is about the same as yours). The fact that yours is still double the upper limit is worrisome... At least your EMA has come down.

A positive tTG IgA can also be caused by diabetes, crohn's, colitis, liver disease, thyroiditis, or an infection. I am sure there are other causes that I don't know about too. I'm glad they are looking into other causes too.

In the mean time, as the others suggested, I would look for possible sources of cc. Hopefully there is nothing and it is just taking a while to normalize. Best wishes

[megsybeth]

A positive tTG IgA can also be caused by diabetes, crohn's, colitis, liver disease, thyroiditis, or an infection. I am sure there are other causes that I don't know about too. I'm glad they are looking into other causes too.

 

...this is actually what I'm most worried about. I know celiac is serious but if it's "just" from gluten exposure I wouldn't be worried. It's that combined with the low blood cells. My levels were low last time she did a cbc as well. I just realized I wrote elevated white blood cells (my son had elevated platelets and I got mixed up), it was low that flagged. 

[nvsmom]

I understand what you mean. Celiac disease is serious but we as patients have total control over our treatment. It's not like other autoimmune diseases where the body's attack on itself can't be slowed or stopped and only symptoms are treated.

I do agree with the others though that because your tTG is double the upper limit after an entire year on the gluten-free diet, that there could be some cc in there... I have two other known autoimmune diseases besides celiac disease (thyroiditis and ITP) and it took about 15 months for my levels to drop to a very weak positive; I'm guessing they have slipped into the normal range now. I doubt my tTG IgA will ever get to a low normal because of my other health issues but I also doubt it would stay as high as yours.... Keep getting tested, hopefully that was just an odd blip.

Active celiac disease can mess with blood counts too. Did the doctor discuss it in relation to celiac disease?

[Gemini]

Low white cell counts are normal for those with autoimmune disorders.  My white cell counts have been low for most of my adult life and I am 54 years old.  It's only a problem if you keep getting sick or have infections all the time.  I do not so don't even give this a second thought any more.  I have 4 AI diseases, in total.

 

The elevated tTg could very well be from another AI disease brewing.  I doubt that a little cc would cause it to be so high after 1 year....it should have come down more than that if you follow the gluten-free diet. I know you are not so careful about cc when eating out but if you really limit that, then the tTg should be lower.  Maybe not in the normal range because it can certainly take a long time to normalize but it should be closer to normal than it is.  Not trying to scare you at all..... I have 3 other issues besides Celiac and I am doing pretty good. 

 

Be more careful with your diet but please have your doc test you for other AI problems too.  You are lucky that your doctor picked up on that....most think the tTg is a screening test for dietary compliance and it is not. It tests for damage.  It would also be good to have a DGP run to actually see if you are ingesting gluten.  If that is not elevated, then it may not be your diet.

[nvsmom]

Good idea to use the DGP to double check the diet!  

[dilettantesteph]

Some need to be more careful than others to get their antibodies down.  There are a lot of case studies published about this.  Recently one was mentioned here about someone who was reacting to gluten in the plastic of their retainer.  

https://www.celiac.com/forums/topic/104736-could-your-retainer-be-preventing-healing-yes/

Some need to go on a more strict version of the diet: Open Original Shared Link

 

I think that you need to be more careful about cc.  Symptom free might not mean damage free.  Could you  maybe listen to your body more and notice some less obvious symptoms?  Have you ever noticed any small increase in symptoms after eating out?

[megsybeth]

The elevated tTg could very well be from another AI disease brewing.  I doubt that a little cc would cause it to be so high after 1 year....it should have come down more than that if you follow the gluten-free diet.

I appreciate this and I am scared but trying to get in to see my doctor and do the follow-ups. The DGP  did come down.

 

I can see how I might seem defensive about the cc aspect but probably you get that when your health is uncertain and you are in the process of testing, it isn't really helpful to be told to listen to your body. I mean I'll probably listen to my celiac specialist and her evidence. My body is telling me every ache and pain is a sign that I'm going to be sick and not be able to take care of my children. Becaus nothing is known yet.

 

If I thought the problem was a pair of gloves at chipotle I probably wouldn't be here and wouldn't be so scared. I'm just hoping to get healthy and be able to take care of my little boys.

[dilettantesteph]

I appreciate this and I am scared but trying to get in to see my doctor and do the follow-ups. The DGP  did come down.

 

I can see how I might seem defensive about the cc aspect but probably you get that when your health is uncertain and you are in the process of testing, it isn't really helpful to be told to listen to your body. I mean I'll probably listen to my celiac specialist and her evidence. My body is telling me every ache and pain is a sign that I'm going to be sick and not be able to take care of my children. Becaus nothing is known yet.

 

If I thought the problem was a pair of gloves at chipotle I probably wouldn't be here and wouldn't be so scared. I'm just hoping to get healthy and be able to take care of my little boys.

 

I had a terrible time with feelings like this when I was first diagnosed and continued to have problems.  It can be very scary.  It will get better.