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Celiac Awareness Letter Writing Campaign


angel-jd1

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angel-jd1 Community Regular

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:


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yllehs91 Apprentice

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
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

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
I emailed about 50 news stations and shows so far

Keep up the great work Kati!!

-Jessica :rolleyes:

jams Explorer

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

OOPS! Sorry Kaiti not Katie!!


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angel-jd1 Community Regular

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

great work folks!!

-Jessica

Roo Explorer

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

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

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

Roo

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

Roo

Wow...making progress :)

angel-jd1 Community Regular

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
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

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

: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

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

: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
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

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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