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TinkerbellSwt

Chop

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After all this time, we finally found out that CHOP in Philly, where my son goes regularly, is now a leading center for celiac disease in children!! This is great news for us as we have an appt to see the chief of the center in June.... here is an excerpt from their webpage....

Overview

The Center for Celiac Disease at The Children


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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Stephanie:

How lucky for you to have such a facility so close. :) Maybe you can pass on some research information.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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That's really good to know since CHOP is only a little over an hour from here. Thanks. Keep us posted.


~Angie~

Gluten free since May 2004

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Oh, I will keep you all posted. If you go to the site, check out celiacs, and meet the team, Colin is seeing the head of the whole dept.. The appt has been made for over a month and a half now and we still dont see her until June 18th! So its a major wait, but I dont know if thats the same for all the docs or just her.. I didnt request her specifically that is who they just gave me... but I will keep everyone posted!! I am soo excited!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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Oh, I will keep you all posted. If you go to the site, check out celiacs, and meet the team, Colin is seeing the head of the whole dept.. The appt has been made for over a month and a half now and we still dont see her until June 18th! So its a major wait, but I dont know if thats the same for all the docs or just her.. I didnt request her specifically that is who they just gave me... but I will keep everyone posted!! I am soo excited!

I hope they give you some answers. I also hope if he does have a problem that the poor kid doesn't have to be glutened for the next few months while they make you wait.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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CHOP is a very nice hospital. I have heard many good things about them. I hear their childrens oncology unit is also very good.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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CHOP is wonderful! We have appts there every 6 months if not sooner. They are watching Colin closely until he is 5. Just incase something might creep up from his premature birth. They really are a godsend. I love it there. I know its weird to love a hospital.. but if you have to go and you are in the area, take your kids there, they have a regular ER for kids.. its amazing..

CHOP is also the number 1 childrens hospital in the country, year after year. So without a doubt, we are always getting the best care available.. and the staff really cares about every single child.. treat each child as an individual no matter what their situation..


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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