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Type 1 : possible celiac disease
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Recommend  Message 1 of 7 in Discussion 
From: SarahSue  (Original Message)Sent: 4/28/2008 5:30 PM
My son's latest blood screenings just came back the other day and the doctor said he may also have celiac disease.  I made an appointment with a GI specialist, but we can't get in until may 30.  I know that Celiac disease is another autoimmunity disease and that he wouldn't beable to eat wheat, barely and rye products.  Does anyone know anything else or have type 1diabetes and celiac disease? What are the chances that the blood screen would come up possitive and then his biopsy be negative.  I am praying for a negative on the biopsy!  He is only 5 and this is alot for him to deal with!
 
Sarah Sue


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Recommend  Message 2 of 7 in Discussion 
From: MSN NicknameMrsMaryBSent: 5/1/2008 8:25 PM
Sarah Sue, I don't know anything about Celiac but you can google Celiac to get some information on it. But I see that you said you were going to the Dr today so maybe hes told you somthing on this.
 
Bless you little Son's heart. He's only 5 ..my heart goes out to him and you as a mother. Let us know what the Dr said. Bless you both.
 
Maryb

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Recommend  Message 3 of 7 in Discussion 
From: MSN NicknameGelsey2003Sent: 5/11/2008 9:44 PM
My Mom has Celiac and my sister and I have type I.  Very close relationship and quite often people do have both.  The problem with the biopsy is it can be scattered damage wise and I believe they can miss the damage.  Usually though, they consider it the best way to tell.
Howevever, blood test wise, if his ttg is positive that is pretty much a sure fire thing.
If the gliadin tests are positive, it isnt such a done deal.
Quite often people who already feel bad, will just go gluten free and forget about it, without even having a biopsy.  But at a young age, you probably wouldnt want to put a child through a life of being gluten free if they didnt have to.
I would say, go to Celiac.com and look up ROCK-Raising our Celiac Kids, and Danna Korn.
She has a wonderful book out for Celiacs, mainly making it fun for the kids to be on a gluten free diet.
She answers her Emails, and has written me back every time I write her.
Her book is Wheat Free Worry Free, and you can find her at that web site I mentioned (as well as much other info.)
The good thing if you do have Celiac, the damage heals as soon as you end up on the diet (which is pretty complex).  The hard thing is not being able to eat what other people eat, and having to be very very careful in restaurants and even hospitals....because people dont get it!  One speck or crumb can make you sick.
I hope you dont have to deal with it, but it is a good time to be living with the condition because more and more restaurants and stores are carrying gluten free foods and people who dont have to go gluten free sometimes still choose to do it because of health reasons.
But do look for that ttg test, because I'm pretty sure that is the one they say means that a positive result is 100 percent positive for celiac.  It means the intestinal damage is already there.

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Recommend  Message 4 of 7 in Discussion 
From: SarahSueSent: 5/12/2008 11:26 PM
Thank  you for all the information and the website.  Now I will have a some information and extra questions to go into the doctor appointment with.  He goes in on the 30th of May for a consultation visit and then they are supposed to "go over things" with us and explain tests and such.  I wish we could do the tests that day because we have to travel 3 hours just to get to the doctor. With gas prices the way they are I'd hate to have to go right back to do the test on another day. 
 
thanks again for the information, im going to check out that website now. 
Sarah Sue

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Recommend  Message 5 of 7 in Discussion 
From: MSN NicknameChezMarkSent: 5/15/2008 5:42 AM
finally i get a window to write in...msn is frustrating me today.  My daughter is almost 16 and is type 1 and celiac. If you need to know anything, just ask and i shall see if i can answer it for you. i know its daunting and you keep asking why is this happening, been there done that, believe me. Stand firm and strong and ask questions.  all the best, chez

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Recommend  Message 6 of 7 in Discussion 
From: SarahSueSent: 9/8/2008 9:43 PM
We got Noahs biopsy results back and they said it was normal.  So next year they will test him again.  I will keep praying that the results are correct and next year we get a negative blood screen for celiac!
 
SARAH SUE

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Recommend  Message 7 of 7 in Discussion 
From: MSN NicknameGelsey2003Sent: 9/13/2008 12:23 AM
Sarah, maybe next year they can just do the blood test and if all the screening is negative, just forget it?
I'm glad he doesnt have it.
I also showed another negative test (yeah!).

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