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6 replies to this topic

#1 Kristina812

 
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Posted 03 April 2013 - 04:56 PM

Hi,   My name is Kris and we are very likely in the process of getting my 8yo DD diagnosed with celiac. Our Dr. sent her to an endocrinologist to investigate her short stature , (<1%) .  He ran blood work on her tissue transglutaminase iga was 1,992, a GI appointment in June and trying to learn as much as we can in the meantime.  

In the meantime I had a routine apt. with my gynecologist, and I asked him to run a tissue transglutaminase iga on me, since celiac tends to be genetic. (Although I don’t have any symptoms that I am aware of)  My # came out at 78 although my gynecologist does not really know what means.  I think that’s a positive result, but I can’t find much on the web to confirm.  I will call my primary care tomorrow.  But thought I’d ask you all tonight.  Thanks for accepting me into your group and thanks in advance for your input.


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#2 psawyer

 
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Posted 03 April 2013 - 05:38 PM

Welcome to the community, Kristina.

Test ranges vary by lab, so having just the result number is not enough to offer an informed opinion. But my guess is that 78 on ttg IgA is very likely to be a positive in any case.

If positive, it is suggestive of celiac disease. The ttg IgA is indicative but not definitive. There are seven tests related to celiac disease that I am aware of, with one additional control that is not specific to celiac disease but validates the other IgA results.

Deaminated gluten tests are highly specific. There is some information about them here from the US NIH
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Type 1 (autoimmune) diabetes diagnosed in March 1986
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#3 gfreemarketingguru

 
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Posted 03 April 2013 - 06:22 PM

I'm no expert on test results, that part is complicated & best left to the doctors. However, what I can tell you is that I had no idea that I had issues until my 1 yr old was diagnosed. Our first assumption was that it stemmed from my husbands genetics (partially true) because he had years of undiagnosed problems. For me, I never would have guessed celiac, I suspected I had an underactive thyroid but thats it. Surprise surprise...after going gluten-free, I had more energy, lost weight & realized I had been bloated all the time & didn't know it, migraines disappeared, brittle fingernails grew strong, etc, etc. Celiac is a malabsorption issue & causes vitamin deficencies - thus the signs & symptoms vary by person & aren't always obvious gi symptoms. Good luck and keep in mind, its the only disease completely in your control - no drugs, just food!
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#4 nvsmom

 
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Posted 04 April 2013 - 07:32 AM

Welcome to the board.

 

As Peter said, it's hard to comment on test results without a lab range, but ttg ranges are usually up to about a 20 and a 78 is far beyond that, and  a 1992 is astronomically high. With ttg IgA tests that are soooo positive, there is little doubt that celiac is causing that result. When ttg test results are close to the normal range, the slightly positive result "can" be caused by other autoimmune diseases or sicknesses.

 

Waiting until June is a long time for your daughter to keep eating gluten when it makes her sick. Is it possible to get your daughter's appointment moved up?  If not, you might want to request the remaining celiac panel, and then reduce her gluten intake until a few weeks before seeing the GI specialist - he might want to schedule an endoscopic biopsy to check the intestinal damage, and if she is eating gluten-free the damage might heal by then.

 

The remaining celiac panel is:

  • ttg IgG (and ttg IgA)
  • total serum IgA (the control test Peter mentioned)
  • DGP IgA and DGP IgG
  • EMA IgA
  • AGA IgA and AGA IgG (these are older and less accurate tests)

You should have these tests done too. It sounds like you have it too even if you have no obvious symptoms (like headaches, achiness, fatigue or hairloss). Remember that the tests will be inaccurate if you stop eating gluten before doing them, so don't cut out gluten until you are satisfied that your testing is done.

 

Good luck with the future appointments and testing.  :)


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#5 Kristina812

 
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Posted 05 April 2013 - 04:09 PM

Thanks all for your input.  The endocrinologist ran a bunch of blood tests on my daughter because of her short statue.  The only ones in the “Celiac Panel” were the Immunglobulin A which came out at a 65 and the Tissue Transglutaminase IgA which was 1943.4 (my original post was from memory and slightly off)  I don’t like the idea of waiting until June because I don’t want to cause anymore damage to her body, but she had no other symptoms besides her height so she feels fine.  We are on a cancelation waiting list, so we will see if we can get in sooner.

  I asked my OBGYN to run the Transglutaminase test just to rule me out…never suspected a positive result.  I see my Primary care on Tuesday to follow up, maybe he will run a more extensive test.  He is my daughter’s Doc too so, I will ask him if we should run the rest of the panel suggested.  All this stuff is new to be, not really how I wanted to continue my education, but best to know now, and good that it is something controllable by a healthier diet not a lifetime on meds.  

Best to all of you.


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#6 Kristina812

 
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Posted 05 April 2013 - 06:01 PM

Also began wondering is I should be even more alarmed by the extreemly high Tissue Tranglutaminase IgA if 1942.3.  Really hoping it doesn't indicate anything more sinister than Celiac.  I will talk to the Primary care next week, but why do I always freak out on the weekends.  Has anyone ever even seen a value that high?


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#7 nvsmom

 
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Posted 06 April 2013 - 08:34 AM

Also began wondering is I should be even more alarmed by the extreemly high Tissue Tranglutaminase IgA if 1942.3.  Really hoping it doesn't indicate anything more sinister than Celiac.  I will talk to the Primary care next week, but why do I always freak out on the weekends.  Has anyone ever even seen a value that high?

I doubt it's anything else. Usually the more positive it is the more likely it is celiac, it's the low ttg tests that often show up with other problems.

 

Hang in there.  :)


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