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Gluten Free Care Packages For Newly Diagnosed Celiacs

beth01

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beth01 Enthusiast
beth01
Posted

I just saw this on the University of Chicago Celiac Care Center website that they send out care packages to newly diagnosed celiacs ( within the last year).  You have to have had antibody levels drawn and an endoscopy.  They ask you for your information and doctors name and numbers to verify information.  I thought this was neat.  Parents can sign up for their children.

 

 

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SMRI Collaborator
SMRI
Posted

This is pretty nice!!!!  

LauraTX Rising Star
LauraTX
Posted

I got one of those when I was diagnosed and it was so awesome and helpful!  Lots of good literature along with some samples.  You have to give them your doctors info and permission to verify your Celiac diagnosis before receiving it.   I assume that is to stop the freebie hoarders.  Here is the link:

Open Original Shared Link

beth01 Enthusiast
beth01
Posted
  • Author

Thanks for posting the link Laura.  For some reason I can't copy and paste or quote.

 

I can't wait to get mine in the mail, it's going to be awesome!

kareng Grand Master
kareng
Posted

I got one of those when I was diagnosed and it was so awesome and helpful!  Lots of good literature along with some samples.  You have to give them your doctors info and permission to verify your Celiac diagnosis before receiving it.   I assume that is to stop the freebie hoarders.  Here is the link:

Open Original Shared Link

Actually, I heard Dr G say that a lot of people seem to think they have Celiac ( been told by doctors) but when they submit the copy of the lab or the path reports, they don't have Celiac or the wrong tests were done. Not sure if they are still asking for copies now, but they used to. He seemed to feel that it was a way to check and make sure people were getting the proper care.

SMRI Collaborator
SMRI
Posted

I signed up. They asked for a PDF of your lab work and your Dr. contact information as well as where you had your biopsy done.

gilligan Enthusiast
gilligan
Posted

Wow!  I'm just not willing to share personal information that easily.  I don't think I want anyone looking at my med reports that I don't know.

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SMRI Collaborator
SMRI
Posted

The U of Chicago is a reputable organization. If it was some random website I would not have signed up.

LauraTX Rising Star
LauraTX
Posted

As said above, University of Chicago Celiac Disease Research Center is one of the leading research centers in America, you can read more about them on their website, we link to their information a lot here.  Open Original Shared Link

kareng Grand Master
kareng
Posted

And like I said - part of the reason they ask for this info is to help people get the proper diagnosis.

  • 3 weeks later...
SMRI Collaborator
SMRI
Posted

I got my gift basket. It's really nice.  I got some gluten-free "granola" bars, gluten-free pie crust mix, a couple sample sizes of gluten-free pasta, 3 different kinds of gluten-free cookies, 3 different magazines about living gluten-free, a handy pocket guide for what to watch for when eating out.  It lists common menu items and possible ways they could be cross contaminated and questions to ask to make sure it is not.  Very nice!!

beth01 Enthusiast
beth01
Posted
  • Author

Mine had three little oatmeal packets, a small bag of cookies, one magazine and two boxes with the same information in them, no coupons.  I didn't really think anything of it until a friend received hers and it was packed.  I was a little disappointed then.  I had ordered one that I am also sharing with my daughter since she didn't get diagnosed with a biopsy so she doesn't qualify for one.  I emailed them and they reassured me that they don't normally send them out when they are so sparse and she apologized.  She said they were having some delays from their suppliers and when they received their new stock she would send out a new one.  I will be sending them a donation, I thought that was very kind.  Now I am excited for the next one.

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