Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Free Care Packages For Newly Diagnosed Celiacs


beth01

Recommended Posts

beth01 Enthusiast

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.

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



SMRI Collaborator

This is pretty nice!!!!  

LauraTX Rising Star

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



SMRI Collaborator

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

LauraTX Rising Star

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

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

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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,066
    • Most Online (within 30 mins)
      7,748

    MamaMercedes
    Newest Member
    MamaMercedes
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.