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shorebird

Member Since 24 Feb 2013
Offline Last Active May 22 2015 07:17 AM
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Posts I've Made

In Topic: Recovery Time For 15 Month Old

22 May 2015 - 07:21 AM

Thank you all so much! I found a pediatric GI in our area but before I make an appointment, I'm going to have him do the gluten challenge. I don't really want to do it, but if that's the only way to get him properly diagnosed then so be it. 


In Topic: Recovery Time For 15 Month Old

18 May 2015 - 10:08 AM

Just as a note, NONE of these can be done on your child now because of being gluten free for a few months because the results will not be accurate. The only test you could run now (which isn't in any way diagnostic) is the genetic test.  Being as you (Mom) are positive, chances of kid being positive for the GENETICS is high so it just means there is the genetic predisposition to having it.

 

I do want to get the genetic test done on the off chance he doesn't have the gene for it then we can investigate other possibilities rather than going on and doing other celiac related testing. About how long do children usually need to do the gluten challenge?


In Topic: Recovery Time For 15 Month Old

18 May 2015 - 10:05 AM

Here are the tests and you would want to see a Ped GI and one who knows about celiac disease. I would also bump up your current Ped appointment. He/She might have a good referral to a celiac savvy Ped GI.


-tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I would visit the University of Chicago's celiac website for more testing information, etc.

Talk to your Ped GI (when you select him). He might recommend staying gluten free until he catches up on weight etc. Then maybe do a gluten challenge prior to school. Whatever decision you make, it will be best for your baby and your family!

Let us know how it goes!

 

Thank you!! My only question is, wouldn't he be too young right now for something like a biopsy? I remember reading something about getting the blood tests done first in children before deciding on an endoscopy.


In Topic: Recovery Time For 15 Month Old

17 May 2015 - 09:23 AM

There are so many variables about how long recovery takes, but I can comment on the growth aspect.  My youngest was DX at 18 months (after dropping off the charts between 12-18 months.  When she hit 3 years she finally started looking like a typically sized kid - "normal", just a little smaller.  I'd say it took about 9-12 months to go from the little twig limbs to what you'd expect.  She started wearing 12 month clothes at 12 months and didn't jump to the any other size until she was well past 2.  Now that capris are in style she's back to a lot of her 18 month pants - perfect on the waist, just below the knees for playing. :)  Fierce, but mighty!

 

We totally went through that stage that nobody believed she should be walking and talking because she was so small.  Honestly, her vocabulary was light years ahead of most kids at that age so that totally threw strangers - she was infant size, but carried on these amazing conversations.

 

I know there can be variations in recovery times, but thank you for answering my question! His little arms and legs are like sticks and like I said, he's just so tiny! I hope he catches up soon. The good thing is, we have a better chance of getting him diagnosed early so it won't affect his growth in the long run like it did mine.


In Topic: Recovery Time For 15 Month Old

17 May 2015 - 09:22 AM

I would seriously consider putting the child back on gluten for testing.  Unless you have a Dr. who is willing to dx based on genetics, your history and the childs history, getting an accurate diagnosis.  As you know this is a life long condition to manage and for things like schooling and hospitalizations, you need to know what you're dealing with.    I would try and get to the Dr. asap and see if it's worth trying to even do the blood work now.  How many months gluten-free has the kiddo been?

 

He's been gluten free for just a few months. I've kept him on a gluten free diet because the few times we slipped up (sneaking bites of his brother's gluten containing food), he went back to having painful stools with rectal bleeding. Honestly, it was so horrible seeing him in so much pain that I just decided to stick with  the gluten free diet. I know he does need to get tested but because I'm not familiar with testing at such a young age, I don't know how he can be tested and when. I was diagnosed via biopsy only so I'm unfamiliar with what blood tests are used. What tests can he get and what type of doctor should he see? A pediatric gastroenterologist?


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