Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

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


megsybeth

Recommended Posts

megsybeth Enthusiast

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

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.

Link to comment
Share on other sites
w8in4dave Community Regular

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. 

Link to comment
Share on other sites
nvsmom Community Regular

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

Link to comment
Share on other sites
megsybeth Enthusiast

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. 

Link to comment
Share on other sites
nvsmom Community Regular

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?

Link to comment
Share on other sites
Gemini Experienced

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

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

Link to comment
Share on other sites
dilettantesteph Collaborator

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?

Link to comment
Share on other sites
megsybeth Enthusiast

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.

Link to comment
Share on other sites
dilettantesteph Collaborator

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.  

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    2. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    4. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    5. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
×
×
  • Create New...