Celiac Awareness Letter Writing Campaign

[angel-jd1]

Ok folks here is how it works April 26-28 we will be sending letters to popular television shows in order to try to create awareness. It was suggested by my support group USASillyYaks that we have a letter writing campaign, so we will!!

Here is a list of shows to try to send a letter to:

Oprah

20/20

The View

The Early Show

CBS Evening News

48hrs.

MSNBC Reports

Good Morning America

The Today Show

Jayne Pauley

Ellen Degenerous

Montel Williams

Regis and Kelly

Here is a form letter that you can use/or you can write your own if you feel wild and crazy!

Hello-

I am writing to you as part of a awareness campaign. We are

encouraging you to have a heart and help us. We are trying to make

more people aware of a very serious disease called Celiac Disease.

With your help we may be able to bring some awareness to

the medical community and to the general public.

Can you imagine a disease where 1 in 133 people walk around with the disease? What is even more bothersome is that many do not even know they have the disease!

Celiac Disease is often overlooked and misdiagnosed. It is a

disease with serious complications. If ignored Celiacs can cause

cancer, diabetes, infertility, seizures, malnutrition, nervous

system problems, tooth enamel defects, osteoporosis, organ

disorders, mental functions, and eventually death if not treated.

Celiac Disease is a condition in which the body negatively

reacts to certain protein chains called glutens. Gluten is found in

wheat, rye, and barley. Some people are also effected by oats. The

negative reaction causes the villi of the small intestine to be

damaged. The damage causes the nutrients from food to not be

absorbed which leads to malnutrition.

Celiac disease comes with a plethora of symptoms and

complications before diagnosis. Patients usually present themselves

with diarrhea, bloating, gas, abdominal pain, weight loss, weakness,

chronic fatigue, iron defiency, bone pain, fuzzy mindedness,

obesity, among other things.

Children with Celiacs disease may be at an even greater risk

for injury because their growth can be stunted. Bone development and

strength may be hindered. They can develop rickets and bow

leggedness ontop of the typical symptoms. Attention Deficit Disorder

is often linked to Celiac Disease.

Some individuals with Celiac do not even have symptoms which

makes a clear diagnosis even more difficult. Those asymptomatic

people are still doing major damage to their bodies and are not even

aware.

The most widely used methods of diagnosis are blood tests and

then a endoscopy. The blood tests check for antibodies. The

endoscopy goes into the small intestine to check for blunting of the

villi. During the endoscopy biopsies are taken.

On average it takes approximately 10 years for an individual to

be diagnosed with Celiacs. Many people live in pain for far longer

than 10 years. Most often they are misdiagnosed with things such as

chronic fatigue, thyroid disease, mental illness, gall bladder

disease, and other things that mimic Celiac Disease.

Once a person is diagnosed with Celiac Disease their journey is

far from over. Usually they are handed a piece of paper from their

doctor that explains the disease in only minor detail and told

to "eliminate gluten from your diet." This sounds like such a simple

task, however it is not. Gluten is hidden in just about everything

commercially produced. Gluten lies in salad dressings, cheeses,

breads, pizza, soy sauce, soups, lunch meat, cakes, cookies,

candies, chips, frozen dinners, sauces, and cereals just to name a

few.

The Celiac Patient must then spend countless hours in the grocery

store reading labels, writing to companies to find out if gluten is

hidden in their foods, doing research at the library and on the

Internet, and trying to find support in family and fellow Celiacs.

A loaf of bread that is baked using ingredients that a Celiac

Patient can have is approximately $4.50 where a normal loaf of bread

is approximately $ 1. 80. Most foods that a Celiac Patient must

purchase are a great deal more expensive than "normal" foods.

Another problem is that the foods are not readily available at the

local grocery store or neighborhood market. Most foods must be mail

ordered from across the country or even from other countries. Long

gone are the days of just running to the store to pick up

dinner.

Eating out is no longer an enjoyable experience for people with

Celiac Disease. Long gone are the days of picking anything off the

menu. Now picking the wrong thing on the menu could send the person

into days or even weeks of excruciating pain. Restaurant staff give

you funny looks when you ask what the foods are made from and

sometimes even refuse service.

However all these things could be changed with help from you. What

we are looking for is someone to make this disease more public. We

want the information about the disease to be more commonly known so

that we do not have to have such a difficult time going to a

restaurant or even a trip to the store.

As of right now the only celebrity figure that has stepped up to

talk about Celiac Disease is Rich Gannon. His daughter has Celiacs

and he speaks out as a parent of a child with the disease.

There are so many people with so many courageous stories that

have Celiacs Disease. The people with Celiacs have endured so much

and are very excited to tell their stories to better the lives of

others.

We are asking for your help. Do a segment on Celiac Disease, do

a whole show about Celiac Disease. We need you to help us make the

disease more well known so that we do not have to fight everyday for

the normal things in life. Please Please Please! Have a heart and

help us!!

Sincerely,

Thanks for your help in this process. Feel free to add more shows to the list if you can think of some!!! Pass the word along to other folks/groups so we can make this a large campaign!!

Thanks again,

Jessica

[jendenise]

Jessica, this is Jenn in LV from USASillyYaks, I had to re register here because I haven't been active for so long. Glad you posted letter writing campaign info here! Hope everyone here sees the importance of raising awareness and joins in.

[minibabe]

Thanks for the letter, I dont have the time to write one, but I would be glad to use yours and just mail out a mess of them to the TV shows listed. I would be so glad to help, awareness is def. the key!. How do u become part of USASillyYaks?

[Guest Viola]

Thanks for the letter Jessica! I will certainly make use of it

[angel-jd1]

How do u become part of USASillyYaks?

Open Original Shared Link just need a yahoo ID. You are more than welcome to join, we aren't one of those groups who says "you can only belong to us" blah!! I like to try to work together with other groups so we can be more united on our info and such. Really helps.

Jessica, this is Jenn in LV from USASillyYaks, I had to re register here because I haven't been active for so long. Glad you posted letter writing campaign info here! Hope everyone here sees the importance of raising awareness and joins in.

I agree, help us out folks, it is for the good of ALL OF US!!

-Jessica

[minibabe]

Thanks I will join when I get home tonight.

[KaitiUSA]

I want to do that as well. Do we just get their addresses from their websites? Also can I use that letter you have as well?

[angel-jd1]

You are all welcome to use that letter, that's why I posted it. I figured it would be much easier for folks to copy and paste than to sit down and write. It might also increase our numbers of participants if they don't have to write their own letter. The shows might also see that we are a "uniform group" if we use one letter.

My suggestion is do a search for the shows and email from there. I am not sure of email addresses, if someone wants to look those up that would be fantastic!!

-Jessica

[KaitiUSA]

ok I looked some email addresses up: I will add more later and look up some other shows

Today show-Today@NBC.com

Weekend Today-WT@NBC.com

Nightly News with Brian Williams-Nightly@NBC.com

Dateline- dateline@NBC.com

Meet the Press- MTP@NBC.com

MSNBC tv-viewerservices@msnbc.com

Countdown with Keith Olberman-countdown@msnbc.com

Imus in the morning-IMus@msnbc.com

Connected coast to coast-connected@msnbc.com

Hardball-hardball@msnbc.com

Abrams-abramsreport@msnbc.com

Lester Holt-Lesterholt@msnbc.com

The Hot List-HotList@msnbc.com

Scarborough Country-Joe@msnbc.com

MSNBC investigates-msnbcinvestigates@msnbc.com

Good Morning America-NETAUDR@abc.com

World News Tonight-NETAUDR@abc.com

Nightline-niteline@abc.com

Primetime live-abc.news.magazines@abc.com

20/20-2020@abc.com

World news now-wnn@abc.com

Weekend news-NETAUDR@abc.com

This Week-thisweek@abc.com

[Guest Viola]

Thanks Kaiti, You're a big help!

[Guest Leidenschaft]

Thanks Kaiti, You're a big help! 

Ditto from me!! I will try to think of some Canadian programs as well, and see if I can find email addresses for them.

I'll have to wait until tomorrow, my day here on "high speed" is just about done! It's too slow at home on dial up!

Have a great evening all!

[angel-jd1]

WOW awesome list Kati!!

-Jessica

[KaitiUSA]

anytime guys I'm glad I can help ....ok here are some more

Early Show-earlyshow@cbs.com

These do not have specific email addresses on here that I could find so here is their address:

Ellen Degenerous Show

PO Box 7788

Burbank, CA 91523

Montel Williams Show

433 West 53rd Street

New York, NY 10019

Live with Regis and Kelly

7 Lincoln Square

New York, NY 10023

Fax:800-330-1106

Hope this helps This is a really good idea

[mom]

Hey all! I will do eveything that I can to promote the letter writing. I started last nite with a note to the Opra show. Hope that that was ok with everyone. I was excited to write it and I will definitely keep going with this project. I am willing to help any way that I can.

Mom

[KaitiUSA]

ok here are some more:

Dayside with Linda Vester- Dayside@foxnews.com

Fox & Friends- Friends@foxnews.com

Fox Magaine- Foxmagazine@foxnews.com

Fox News Live- Feedback@foxnews.com

Fox News Live Weekend- Feedback@foxnews.com

Fox News Sunday- FNS@foxnews.com

Fox News Watch- Newswatch@foxnews.com

Fox Report with Shepard Smith- Foxreport@foxnews.com

Hannity&Colmes- Hannity@foxnews.com, Colmes@foxnews.com

Heartland with John Kasich- Heartland@foxnews.com

On the record with Greta- Ontherecord@foxnews.com

Special Report with Brit Hume- Special@foxnews.com

Studio B with Shepard Smith- Studiob@foxnews.com

The Big Story w/ John Gibson- Myword@foxnews.com

The O'reilly factor- Oreilly@foxnews.com

Your World with Neil Cavuto- Cavuto@foxnews.com

[Guest gliX]

if its sent by mail it will probably receive more consideration

i'm not sure why, but probably

[Guest ajlauer]

There is less time involved in composing - as well as reading (and deleting) - an email. If you take the time to handwrite something... the reader will be more likely to take the time to read it after they have already opened the envelope. Emails may seem like a simple cut/paste, and that you didn't really invest any time in it.

I haven't actually researched the email vs postal issue... but that is my guess.

[angel-jd1]

If you have the extra money to do yours by regular mail then feel free. I will be doing mine by email. I don't have a ton of extra money to spend on postage. Sorry.

-Jessica

[mom]

Iwill do mine by e-mail also. Snail mail can also be "slow" to be read out of the snail "pile" As long as we all can send in the letters to get the message across--a variety of e-mail and snail mail(massive writing) will be great.

Mom

[angel-jd1]

Totally agreed!!

-Jessica

[Guest gliX]

I'll send a few by regular mail. Postage wouldn't be that expensive, it's only 1 stamp per company (because its based on weight of letter, not how far it's being mailed to).

[angel-jd1]

A member from USASillyYaks has gotten Clan Thompson as a partner for our letter writing campaign, the following is her post onto my site about them and also the letter in which clan thompson talks about our campaign!! I thought it was pretty exciting.

-Jessica

Just thought I'd let you all know I had asked for Clan Thompson (really interesting Celiac/gluten-free website) to participate in our letter writing campaign and here's the email they sent out to all the subscribers, this is a monthly I think newsletter that they have very generously included us in by Name! Score for USASillyYaks and the letter writing campaign, sorry very excited about their support! Jenn in LV

Clan Thompson <celiac@clanthompson.com> wrote:

Date: Thu, 21 Apr 2005 19:36:03 +0200

To: jendenise0401@yahoo.com

From: Clan Thompson <celiac@clanthompson.com>

Subject: Clan Thompson Celiac Newsletter: Issue #68 April 21, 2005

Clan Thompson Celiac Newsletter

Issue #68 April 21, 2005

Copyright 2005 by Clan Thompson

All rights reserved. Subscribers may print copies of this newsletter for others to read or send copies to their friends as long as the ENTIRE publication is printed or sent along with all copyright notices and attributions. Sending and/or printing excerpts is not allowed without written permission.

To learn more about celiac disease, visit us online at:

To subscribe to this newsletter: Open Original Shared Link

To unsubscribe: Open Original Shared Link

****************************

In this issue:

1. News: MALT-O-MEAL CEREALS CHANGES INGREDIENTS

GLUTEN-FREE DIET MAY ALLEVIATE DEPRESSIVE AND BEHAVIOURAL SYMPTOMS...

SURVEY RESULTS ON CELIAC DISEASE

USASillyYaks NEEDS YOUR HELP IN A LETTER WRITING CAMPAIGN

2. Where To Find Gluten Free "Stuff"

3. The Cook's Corner: PARMESAN BAKED SALMON

4. Ask the Cook: DOES THE BLENDING OF WET INGREDIENTS ADD "LIFT" TO MY CAKE?

5. Announcements: NEW FOOD SMARTLIST DEMO RELEASED!

6. Ask the Doctor: IS CELIAC DISEASE RELATED TO RAGWEED ALLERGY?

7. This Month's List: GLUTEN FREE FOODS

8. Letters From Our Readers

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1. MALT-O-MEAL CEREALS CHANGES INGREDIENTS

by Lani K. Thompson

Malt-O-Meal Cereals was known for providing celiacs with three cereals that did not contain any gluten containing ingredients, but that has changed. After hearing that wheat starch had been added to the Dynabites and Corn Bursts cereals, I called them to register my concerns and to let them know how much their decision would affect celiacs who have so little choice when buying cereals in mainstream supermarkets.

The woman who took my call knew why I was calling as soon as I asked to speak to Shannon, the Consumer Affairs Manager. "Is this about the gluten free ingredients?" she asked. I said yes. She said she could answer my questions, so I asked her why her company had decided to start adding wheat starch to the cereals that previously contained gluten free ingredients.

She said Malt-O-Meal cereals are not made on dedicated lines and the company is concerned that if people don't see wheat in the ingredients they might think it's safe to eat and, because of the possibility of cross contamination, someone might have a severe allergic reaction and die. However, she said, the company is aware of the problems celiacs face because one of their own managers has celiac disease!!

I asked them if there were any plans to develop a dedicated line and she said, "We certainly hope so but, until we can, we have to look at the whole allergen situation." She did say that Fruity Dynabites will continue to be made with gluten free ingredients even though the company will not say it is gluten free. She said the company will do this because Fruity Dynabites is made in an area that does not contain any wheat.

Malt-O-Meal Cereals is collecting comments from those who call in with their concerns and the woman I spoke with admitted that there have been many, many calls. If you'd like to call, you can reach them at 1-800-743-3029.

---

GLUTEN-FREE DIET MAY ALLEVIATE DEPRESSIVE AND BEHAVIOURAL SYMPTOMS IN ADOLESCENTS WITH COELIAC DISEASE

Coeliac disease in adolescents has been associated with an increased prevalence of depressive and disruptive behavioural disorders, particularly in the phase before diet treatment. This study looked at the possible effects of a gluten-free diet on psychiatric symptoms, on hormonal status (prolactin, thyroidal function) and on large neutral amino acid serum concentrations in adolescents with coeliac disease commencing a gluten-free diet.

RESULTS: Adolescent coeliac disease patients with depression had significantly lower pre-diet tryptophan/competing amino-acid (CAA) ratios and free tryptophan concentrations, and significantly higher biopsy morning prolactin levels compared to those without depression. A significant decrease in psychiatric symptoms was found at 3 months on a gluten-free diet compared to patients' baseline condition, coinciding with significantly decreased coeliac disease activity and prolactin levels and with a significant increase in serum concentrations of CAAs.

CONCLUSION: Although our results of the amino acid analysis and prolactin levels in adolescents are only preliminary, they give support to previous findings on patients with coeliac disease, suggesting that serotonergic dysfunction due to impaired availability of tryptophan may play a role in vulnerability to depressive and behavioural disorders also among adolescents with untreated coeliac disease.

Read the entire article online here: Open Original Shared Link

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SURVEY RESULTS ON CELIAC DISEASE AWARENESS: Physician Survey Shows Need for Education About Diagnosis and Symptoms

FLOURTOWN, Pa. and SAN MATEO, Calif., March 29 /PRNewswire/ -- The Children's Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced today the findings from a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (celiac disease) in children. The survey was conducted by CDHNF in partnership with Epocrates, Inc., using the Epocrates Honors® Market Research Panel.

The survey results supported the clear and urgent need to promote awareness of the individuals at risk, the associated conditions, the proper method of screening for celiac disease, and the necessary step of confirming the diagnosis with a small intestinal mucosal biopsy.

Regarding the diagnosis of celiac disease, only 16% of respondents chose the most appropriate first line serological screening test for celiac disease, which is the IgA-anti-human tissue transglutaminase antibody. If the patient has positive serology for celiac disease, the majority of the survey respondents did not recognize the need to confirm the diagnosis with an intestinal biopsy before starting a gluten free diet.

"Up to 50% of individuals screened with an anti-gliadin antibody test may not have celiac disease at all, particularly if the person has atypical symptoms. The survey suggests that some people unnecessarily are recommended a gluten free diet, while others at risk are not being properly screened, identified and placed on a gluten free diet," said survey co-author and CDHNF Celiac Campaign Scientific Advisor Martha Dirks, MD, Sainte-Justine Hospital, University of Montreal, Canada.

"It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained," added Dr. Dirks.

In terms of recognizing symptoms, two thirds of the respondents felt that they were aware of at least three GI related symptoms of celiac disease and could correctly identify short stature and iron deficient anemia resistant to oral iron as manifestations of celiac disease.

However, the survey also revealed there is a lack of awareness about associated conditions with celiac disease. For example, an average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions.

"The level of knowledge of celiac disease is not what we like it to be. The survey illustrates that clear educational initiatives are needed to promote appropriate testing of persons at risk for celiac disease such as the recently released NASPGHAN Celiac Guidelines, NIH Consensus Conference, and our CDHNF grand rounds program," said survey co-author and CDHNF Celiac Campaign Scientific Advisor Stefano Guandalini, MD, University of Chicago. Dr. Guandalini added that an area definitely in need to be better known is that of screening for family members of patients with celiac disease. "With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended."

The survey indicates the need to provide medical professionals with as much information as possible about celiac disease. As a result, Epocrates has teamed up with CDHNF to distribute the CDHNFCD guidelines, gluten free diet guide and other educational resources to over 140,000 medical professionals via their DocAlert® messaging technology which will allow medical professionals to save the guidelines summary to their hand-held device and request additional information via e-mail.

"Epocrates continues to focus on patient care and safety, and our members look to us to provide the latest, most current information on drugs and diseases such as that provided through this campaign. We are pleased to support this effort to promote child health and wellness," said Kirk Loevner, Epocrates President and CEO.

The NASPGHAN and CDHNF survey was conducted through the Epocrates Honors market research panel, which enables healthcare professionals to share their clinical expertise. Typically, this research consists of online surveys that take between 10 to 45 minutes to complete. Criteria to participate vary by study. In exchange for their participation, users receive an honorarium. Fifty-seven of the nation's largest healthcare market research companies conduct hundreds of studies annually by accessing the industry-leading Epocrates Honors panel of more than 121,000 U.S. physicians and 254,000 allied healthcare professionals including physician assistants, nurse practitioners, RNs, dentists, pharmacists and others.

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USASillyYaks NEEDS YOUR HELP IN A LETTER WRITING CAMPAIGN

USASillyYaks, a support group for those with Celiac Disease, has started a Celiac Disease Awareness Letter Writing Campaign which will run from April 26 to 28. Their goal is to write letters to popular television shows in the hopes of increasing awareness about Celiac Disease and motivating one of the shows to do a segment on Celiac Disease. The group is asking individuals and companies with knowledge of Celiac Disease to support their campaign by writing letters. If you don't want to write your own letter, you can get a copy of a generic letter by emailing Jennifer Heinemeier at jendenise0401@yahoo.com

LIST OF CONTACTS:

Contact Oprah by clicking on the below listed link and filling in their email form:

Open Original Shared Link

Good Morning America, Weekend News & World News Tonight email address:

NETAUDR@abc.com

Nightline's email address:

niteline@abc.com

Primetime Live email address:

abc.news.magazines@abc.com

20/20 email address:

2020@abc.com

This Week email address:

thisweek@abc.com

ABC News can also be contacted via snail mail:

ABCNews, 7 WEST 66th Street, New York, NY 10023

To email the ladies from The View click on the link below which will take you to their page and you can choose who you want to email. Barbara is the main host.

Open Original Shared Link

The Early Show email:

EarlyShow@CBS.com

CBS Evening News

evening@cbsnews.com

48 Hours

48Hours@cbsnews.com

(CBS) 60 Minutes:

ADDRESS:

60 Minutes

524 West 57th St.

New York, NY 10019

EMAIL: 60m@cbsnews.com

(CBS) 60 Minutes Wednesday

ADDRESS:

60 Minutes Wednesday

524 West 57th St.

New York, NY 10019

EMAIL: 60w@cbsnews.com

MSNBC email:

letters@msnbc.com

The Ellen Show link to email her:

Open Original Shared Link

To email the Montel Show you have to sign up and log in. The link is:

Open Original Shared Link

Live With Regis & Kelly mailing address

Live with Regis & Kelly, 7 Lincoln Square, NY, NY 10023

The Today Show

today@nine.com.au

The Jane Pauley Show link to email:

Open Original Shared Link

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2. Where To Find Gluten Free "Stuff"

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For more information, and to see our BIG Celiac jewlery specials for April, please visit our website at: www.angelicgrooves.com

---AD: GLUTEN SOLUTIONS ---

Craving bagels and buns? Gluten Solutions features new sesame and poppy seed bagels by Sterk's Bakery - just toast 'em and serve. For a limited time, subscribers of Clan Thompson can receive a 10% discount off all products purchased at www.glutensolutions.com.

In addition to bagels, Gluten Solutions is now featuring hot dog and hamburger buns for the perfect BBQ, as well as some great sponge cakes - just click on "New Products" to see all our newest treats. Be sure to visit www.glutensolutions.com to redeem your 10% discount when you checkout - just enter the following promotional code on our web site: Clan Thompson

---AD: DIETARYCARD.COM ---

Eating out one of life's greatest pleasures - don't miss out because of your diet.

www.dietarycard.com make ordering gluten-free at home and abroad risk-free and stress-free.

We're now offering discounted Classic Celiac Cards as well as our customised Dietary Alert Cards.

Put peace of mind in your pocket today at www.dietarycard.com.

---END OF ADS---

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3. The Cook's Corner: PARMESAN BAKED SALMON

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(Editor's Note: Connie Sarros has been busy traveling this year. Since January, she has spoken to celiac support groups in PA, NJ, MD, VA, AL, GA, NC, OH and WV. She was also the guest speaker at the Heath Food Fair at the Cleveland Convention Center.

Connie

[mom]

Completely awesome!

Mom

[angel-jd1]

Tomorrow our letter writing campaign begins!! Don't forget to get those letters sent and see what we can do!! You are given 3 days to get the letters written and sent. You are welcome to use the generic letter if that makes things easier for you. Either way just write write write!! Hopefully we will get some sort of response out of it, or at least create some awareness!!

-Jessica

[angel-jd1]

Today (thru thurs) you can begin writing your letters to the tv shows and news shows!! Have a great time and post when/if you hear something back from anyone!!

-Jessica