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
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.

 

 

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. GlorietaKaro
      - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Thanks to both of you for your responses! Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In t...
    2. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    3. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    4. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    5. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748
    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.