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:
    Support Our Content
    eNewsletter
    Donate

Ttg And In Denial? Can You Tell Me Your Number?

afitgirl

Recommended Posts

afitgirl Rookie
afitgirl
Posted

I have looked everywhere for this.   I'm new, scared and trying to understand whatever I can.   It seems that this TTG thing is the most important in the blood screening?  Why can't I find  random numbers of people?   I want to compare and find where I fit in?  Or is that denial?  I was a 17.   I want to see 35, 100, 11, etc.   The lower the score the better.....is a 17 say....not so bad??   I'm grasping at anything I can here.  


 
 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

What is the range for the test you took?  Different labs use a different measurement.  Sort of like measuring in inches or centimeters.  

afitgirl Rookie
afitgirl
Posted
  • Author

What is the range for the test you took?  Different labs use a different measurement.  Sort of like measuring in inches or centimeters.  

0-3- neg

4-10 weak pos

10+ pos

But I'm wondering if 17 really isn't that high....Perhaps people have....400?

kareng Grand Master
kareng
Posted

0-3- neg

4-10 weak pos

10+ pos

But I'm wondering if 17 really isn't that high....Perhaps people have....400?

 

 

I don't think it measures that high (400)usually.  It really doesn't matter what my tests were for your circumstances.

 

Look - time to face it - your test was positive.  Have you had an endoscopy?  That is probably the best way to find out the extent of the damage.  It really doesn't matter if you are at the beginning of Celiac or have had it, untreated for 10 years, the treatment is the same.  You aren't " a little bit Celiac".  

LauraTX Rising Star
LauraTX
Posted

Usually when I see a positive result mentioned it is a more modest number like yours, although I have seen some that were very high, 100+.  However, like Karen said, it does not indicate how likely you may be to have Celiac, a positive is a positive no matter where it is on the scale, and you need to go ahead and have an endoscopy done for proper screening. If you want a measure of severity or damage, the endoscopy is going to tell you the most information. 

 

I have an IGA deficiency so my number would not be good to compare to someone with a normal immune system.  I totally understand you trying to rationalize things, that is very natural when you are faced with a scary diagnosis.  Let us know what happens.

RMJ Mentor
RMJ
Posted

With negative being 0-3, I was a 76 for TTG IgA.

afitgirl Rookie
afitgirl
Posted
  • Author

Thank you!! 

Kareng- I didn't know that.  I am so new that I truly believed that you could be a little celiac.   I thought perhaps my body was "tougher" maybe since my symptoms seem to be more silent (but apparently deadly :( )   I see my doctor Thursday after just hearing this results Friday.  I'm having a hard time.   Really hard time adjusting.   I know you are right and it's time to face it.  But I'm sure many people go through a denial point? I thought maybe I could be at such a early stage that it was more of an indication of my future in time and not my path yet.   Like...maybe I wouldn't really develop it for 10 more years and I had more time to take go all my kids favorite food places with them. 

 

Laura- Thank you for you input.  You told me what I needed to know.  Very kind.  I'm just...scared of this life.

RMJ- Thank you too!  I was hoping to hear a number like that.   It made me wonder if my biopsy wouldn't show much damage...perhaps I'm at a risk but not full blown celiacs yet?

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Yep, you are quite positive - about 4 times the upper normal limit of less than 4... definitely no grey area there.  :(  Even if your numbers were lower, you should know that we have celiacs around here who had a completely normal tTG IgA but extensive intestinal damage, and there are some with very high numbers who had very little intestinal damage.

 

I think of it like a pregnancy test - some people's double lines are faint and others are dark but they both mean the same thing.  ;)

 

Just because you asked, my tTG IgA was 200+ but my labs upper limit for normal was 20. 

 

Oh, and you need to get your kids checked too. :(  Celiac has a genetic component so your kids are at risk of developing it. They should be tested every 2-3 years if they continue to eat gluten even if they have no symptoms at all.

 

Best wishes while you adjust to the diet.  It is hard to accept at first, but after a few months it will be much much easier.  Promise.

  • 1 month later...
SMRI Collaborator
SMRI
Posted

I was tested at 32.4.  I know my niece was 128 and had no symptoms.  I mainly have D but now that I'm reducing my gluten in prep of going gluten-free, having too much gluten has brought back some major gas that I had before but just thought it was what it was.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748
    Estee
    Newest Member
    Estee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...