Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac Awareness Letter Writing Campaign

angel-jd1

By angel-jd1
in Publications & Publicity

Recommended Posts

angel-jd1 Community Regular
angel-jd1
Posted
  • Author

The folks over at USASillyYaks noticed that on Oprah's site that they are looking for people with odd disorders, so many people have been posting their letters under that topic at the Oprah site. Just thought I would give you all a heads up on that.

How is the letter writing going for everyone??

-Jessica :rolleyes:

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

Celiac.com Sponsor (A8-M):


yllehs91 Apprentice
yllehs91
Posted

Hey. I just got finished e-mailing about 20 companies (most of them that were on here already). But I also added about 2 --one news station & one newspaper -- from my area to the list. I e-mail the generic e-mail, but with a msg at the top, explaining how long I've had it, and that it's imporant to me, and to get the msg out...etc...so that it'd be a bit more personal. Well, I hope it works! Good luck everyone! :D

angel-jd1 Community Regular
angel-jd1
Posted
  • Author
I just got finished e-mailing about 20 companies

WOW! Nice work!!! Let us know if you hear anything back from them.

-Jessica :rolleyes:

KaitiUSA Enthusiast
KaitiUSA
Posted

I emailed about 50 news stations and shows so far.

I also put in for the Oprah show and gave my story with a brief letter.

I plan to snail mail some companies and am finishing up the letters now...also contacting local stations.

angel-jd1 Community Regular
angel-jd1
Posted
  • Author
I emailed about 50 news stations and shows so far

Keep up the great work Kati!!

-Jessica :rolleyes:

jams Explorer
jams
Posted

Hey there! I am a newbie but wanted to kick in some support. I sent a bunch of emails out to the places that Katie listed. Hopefully someone will hear something! I live near Milwaukee. There was a big article in the paper in past years about celiacs. They were referencing the Gluten Free Trading Company here in Milwaukee. It will be exciting to see if this campaign gets responses! I'll watch for updates!

jams Explorer
jams
Posted

OOPS! Sorry Kaiti not Katie!!

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

Celiac.com Sponsor (A8-M):


angel-jd1 Community Regular
angel-jd1
Posted
  • Author

Today is our last official day for sending letters out!! Keep up the

great work folks!!

-Jessica

Roo Explorer
Roo
Posted

Hey guys,

I'm on the e-mail list for Stlouisalerts and this came around today. I guess all the hard work of letter writing paid off!!!!!!!!

I already set my TIVO!

Roo

In a message dated 4/28/05 7:41:10 AM, kl_king@swbell.net writes:

I rec'd an email from the TODAY Show.

yllehs91 Apprentice
yllehs91
Posted

that is so great! okay, can ya do me a favor? what channel is it on? ABC? (I used to watch it, but not anymore, so I forgot) :unsure: And it comes on @ 7 am central right? :unsure: Haha..please let me know. Good work everyone! ;):lol: Even if it's only one, it's something! :D

Roo Explorer
Roo
Posted

I think it's NBC May 10th at 7:00 A.M.

Roo

celiac3270 Collaborator
celiac3270
Posted
I think it's NBC May 10th at 7:00 A.M.

Roo

Wow...making progress :)

angel-jd1 Community Regular
angel-jd1
Posted
  • Author

Just thought I would share my response from 30 min. meals on the food network.

-Jessica :rolleyes:

Thank you for your recent e-mail and your comments regarding programming on Food Network.

All of our programming is dedicated to addressing our viewer's infinite connection to entertaining, eating and dining out in unique and original ways. Though it is our hope that every viewer enjoys the great variety of programs offered on Food Network, we realize that not every program is suited for every taste.  The comments and suggestions offered in your e-mail will be kept in mind as we plan future programming.

Once again, thank you for taking the time to write to Food Network.  Your views on our programs provide the most direct and accurate information upon which we can make programming decisions.  Please know that your comments will be employed in evaluating current and future programming on Food Network.

Best regards,

Food Network Viewer Services

Food Network

HGTV

FINE LIVING Network

DIY - Do It Yourself Network

Shop at Home

Great American Country

angel-jd1 Community Regular
angel-jd1
Posted
  • Author
I rec'd an email from the TODAY Show.  They are going to air a segment

on Celiac May 10 with cooking demos.

Not for sure on this, trying to still do some checking, but I believe it is an Australian today show that is having the segment.

-Jessica :rolleyes:

angel-jd1 Community Regular
angel-jd1
Posted
  • Author

This excerpt comes from the USASillyYaks Website Open Original Shared Link

Jenn has gotten it where we can watch the Australian Today show online!! Awesome!!

-Jessica :rolleyes:

Alright hopefully I've included everyone who's gluten free. The upcoming Australian gluten free segment on TCN 9 is going to be available to all of us here in the states too! Jenn in LV

"Beaumont, Melissa" <MBEAUMONT@nine.com.au> wrote:

Subject: FW: Americans interested in an upcoming program on TCN 9 Today Show

Date: Mon, 2 May 2005 07:39:45 +1000

From: "Beaumont, Melissa" <MBEAUMONT@nine.com.au>

To: "TCN Today Show" <todayshow@nine.com.au>,

<jendenise0401@yahoo.com>

Hi Jennifer,

Thanks for your email.

I'll put the video on the web at www.ninemsn.com.au/today

Melissa

Guest BellyTimber
Guest BellyTimber
Posted

:D

1.How did you manage to write all those letters in two days!

2.Please can we copy your letter in the U.K. but with adaptations (to cater for the fact that some people get certain foods on doctor's prescription at a flat rate - not me though - and that our national coeliac society publishes a food and drink directory with monthly amendments).

3.Our coeliac awareness week is around 20th of May but we ought to be thinking of 2006. I can't write any letters in time this year!

Fabulous work, hoping lots of benefit comes!

:D

angel-jd1 Community Regular
angel-jd1
Posted
  • Author

You are welcome to use my letter.

Copy and paste the letter and send it as an email is the fastest way for me personally.

Good luck with your letter writing campaign in the UK!!! Let us know how that goes.

-Jessica :rolleyes:

Guest BellyTimber
Guest BellyTimber
Posted

:lol:

Shall have to discuss with people whom to mail it to. Perhaps this will be ready for 2006!

:)

  • 6 months later...
ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted
ok here are some more:

Kaiti you are a doll! I just love you! You never stop amazing me. Thanks for all the info. I don't know you but, you have helped me on the darkest day of my life with the death of my Auntie her feeding tube and celiac disease testing. I am forever a fan. I thank God for your big heart and kindness.

I'm going to do some letter writing.

Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,805
    • Most Online (within 30 mins)
      7,748
    MadiKlumpner
    Newest Member
    MadiKlumpner
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      Since I've been a member of this forum,  I've seen some people write that they have not been able to tolerate corn, and others nightshades - tomatoes, potatoes, eggplant, and peppers (including bell peppers, chili peppers, and paprika).    However, intolerances can be short term, just while you are healing.    So bear this in mind if you start dropping certain foods from your diet - you may well be able to eat them again once you are healed.
    • trents
      Anyone From South Africa

      By trents · Posted

      Welcome to the forum, @Izelle! Normally, the diagnosis of celiac disease involves two stages.  The first stage involves a simple blood test that looks for antibodies that are pretty specific to celiac disease. Celiac disease is an autoimmune disorder that attacks the lining of the small bowel which produces antibodies that can be detected in the blood with tests specifically designed for this purpose. There are a number of these tests that can be run. Some are more specific for celiac disease and thus more reliable than others. The two most common antibody tests ordered by physicians when diagnosing celiac disease are the "total IGA" and the "tTG-IGA" test. At least these two should always be ordered. Here is a an article outlining the subject matter of celiac antibody tests:  If the tTG-IGA levels are 10x normal then it is becoming common practice in some countries to grant a celiac diagnosis on the bloodwork alone. The second stage involves an endoscopy with biopsy of the small bowel lining to look for the damage to the small bowel lining typically caused by celiac disease's inflammatory process over time. This is usually done in response to one or more positives from the blood antibody testing and constitutes confirmation of the antibody testing to eliminate the possibility of false positives. 
    • Izelle
      Anyone From South Africa

      By Izelle · Posted

      Hi there, Please can you tell me exactly how this disease is diagnosed? I am also from South Africa Regards Izelle
    • Waterdance
      Diagnosed gluten allergy but not Celiac

      By Waterdance · Posted

      Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. 
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all.  So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once and there I ordered something raw vegan and gluten free hoping for the best. I also stayed away from oats and soy and dairy. I've also been increasing my vitamin B complex. I've been doing this for about 12 days and while I know that's not that long, I'm still getting sick. Sometimes having diarrhea. Sometimes getting headaches and having necklaces. Sometimes waking up feeling horrible brain fog. I did go to my GI doc and they did a blood test and found my TtG-IgA was in the negative range (and a lower number than I'd had before). I also had normal levels of CRP. My stool showed no elevation of calprotectin and no pathogens. My GI doc said the symptoms could be related to a gluten exposure or to IBS. I'm keeping a food diary to see if I can narrow down whats going on. I know I have good days and bad days and Im trying to isolate what makes a good day versus a bad day. Generally so far it looks like if it eat something super cautious like raw vegetables that I chopped myself into a salad and almonds, im fine but if I eat something more complex including, say, chicken and rice (even if packaged and certified gluten free or made by me with gluten free ingredients), it may not go so well. I may end up with either a headache, neck tension, brain fog, and/or diarrhea that day or the morning after. Any other thoughts or suggestions? I am planning to start tracking my foods again but I wanted to do it in more detail this time (maybe down to the ingredient level) so are there any common ingredients that celiacs have issues with that you all know of that I should track? I've got dairy, oats, soy, eggs, corn, peas, lentils on my “watch list”. Other things I should add? I'm hoping if I track for another two weeks I can maybe pin down some sensitivities. Appreciate the help and tips. Thank you so much!!
×
×
  • Create New...