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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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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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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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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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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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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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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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    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
    • How were the allergies diagnosed? I only ask because it's highly usually to be allergic to it. 
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