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

afitgirl

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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.  


 
 

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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?

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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.

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