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Further Testing?

wmramsel

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wmramsel Explorer
wmramsel
Posted

I called my pediatrician to get the type of tests that the inept ER ran on Friday, and they only did the IgA and not a full panel.  When they call back I am going to get the results- it is my understanding that under 19 is negative?

 

Also, I planned on asking for a total serum IgA, DGP-IgG, ELISA, and possibly and EMA depending on the results of the IgA.  

 

Overkill?  Necessary? Paranoid mom? Rushing it?

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kareng Grand Master
kareng
Posted

In all fairness to the ED doc, The ER isn't really the place to get tests like the Celiac panel run.  The pediatrician should run the whole panel.

wmramsel Explorer
wmramsel
Posted
  • Author

Yes, he was ordered by our pediatrician's office to run the full panel because we ended up in the ER due to trying to do a gluten trial in order to test.  Seriously, he was ridiculous.  But that is another story for another day.  Our pediatrician is referring us to a great GI, so we are going to have them run there.  Our pediatrician said that she isn't very knowledgeable regarding Celiac and wanted to defer testing to the GI so that all the right tests get ran.   

 

Her TtG-IgA test results were:  Total serum= 63, and IgA = 2.  

 

That was on a gluten free diet since November 2012, with 2 slices of bread about 2 hours before the blood was drawn

 

Thoughts?

nvsmom Community Regular
nvsmom
Posted

I would say running the full panel is for the best as celiacs often do not show up positive in every test run - especially young kids.

kareng Grand Master
kareng
Posted

So...The child hasn't eaten gluten in 6-7 months?  The results would likely be negative, even if she has Celiac.

 

 

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wmramsel Explorer
wmramsel
Posted
  • Author

So...The child hasn't eaten gluten in 6-7 months?  The results would likely be negative, even if she has Celiac.

 

 

Open Original Shared Link

 

Yes, Ma'am.  I figured they would be negative or even inconclusive- but the lab didn't give them ranges.  I was trying to see on the spectrum she would fall.  We went gluten free on November 1, 2012 due to symptoms.  I didn't know anything about Celiac Disease, so I didn't think about testing before.  We went gluten free without speaking to a doctor.  Is there any testing that can be done as gluten free that would be reliable?

wmramsel Explorer
wmramsel
Posted
  • Author

One more question- if she has been gluten free, should her TtG-IgA be 0?  I'm having trouble understanding the results.

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StephanieL Enthusiast
StephanieL
Posted

The only test you can do while NOT of gluten would be the genetic test and that ISN'T a diagnostic test in any way. All is says is "yes or no" to the genetics of being predisposed to having Celiac.  From your other posts though I would also suggest an IgE allergy test as it sounds more like an allergy.  Your child would not have to be consuming wheat/gluten for that,

wmramsel Explorer
wmramsel
Posted
  • Author

The only test you can do while NOT of gluten would be the genetic test and that ISN'T a diagnostic test in any way. All is says is "yes or no" to the genetics of being predisposed to having Celiac.  From your other posts though I would also suggest an IgE allergy test as it sounds more like an allergy.  Your child would not have to be consuming wheat/gluten for that,

 

Thanks!  I'll be sure that one is on the list of whatever they do.  Trying to decipher all this from the internet is really difficult :(

kareng Grand Master
kareng
Posted

One more question- if she has been gluten free, should her TtG-IgA be 0?  I'm having trouble understanding the results.

 

 

What was the range for the test?  My understanding is that it is normal to have a number in the negative range.  I think it may be how the tests work.

 

But, if the person isn't eating gluten, they wouldn't make any antibodies to it, so its probably a waste of money. 

wmramsel Explorer
wmramsel
Posted
  • Author

What was the range for the test?  My understanding is that it is normal to have a number in the negative range.  I think it may be how the tests work.

 

But, if the person isn't eating gluten, they wouldn't make any antibodies to it, so its probably a waste of money. 

 

I called and they said "under 19 is normal." They couldn't tell me anything about what it should be on a gluten-free diet or otherwise.  

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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