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Mom23boys

And The Winner Is....

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I never get to Boarders here which is the only place that carries a lot of different magazines.

Maybe we should get Oprah to do it!

Your right that its time to stop hiding and being shy about it. The potential benefit to the vast numbers of undiagnosed is phenomenal as is the possible gluten connection to all the other health problems, especially in children. The only potential problem I would see is that the truly big advertisers are those agribusiness concerns that continue to manufacture the junk food that can cause many problems for us.

Ken

What are some competitors magazines?? Let them know how she dropped the ball. (I'm still kind of miffed about how she kind of snubbed Alexis (??) this morning for the pampered pup lady). We can back this person and make a #1 mag. We have style, class and shouldn't have to hide in the corner like the dark ages.

"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Several thoughts.

The rules were that you could vote once per day. Some people more than abused that and could have very well skewed the percentages. Once the multiple votes were weeded out and eliminated perhaps the final result is not what we were looking at when the percentages were taken down.

We really don't need more recipes. This forum and others are loaded with recipes. What we need is recognition and awareness. A publication by a main-stream media mogul would go a long way toward that goal. Donating our subscribed copy to a doctor's office, restaurant or library would have been a good way to make ourselves more known.

Martha Stewart certainly would not be the first one to miss the boat and turn down the golden opportunity of a lifetime. Somewhere out there is an entrepreneur who will be forever grateful that Martha blew it big time! :lol:


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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[quote name='kenlove' date='Feb 12 2008, 04:13 PM' post='397121'

There are 19,000+ members here as well as other celiac groups which should make an impact on someone?

A paid circulation of 10,000 members would make a lot of magazines happy!


Jillian

Positive Blood test and Biopsy

Inflamed stomach lining

Gluten free since July 6, 2005

Tarrytown, NY

"Sometimes being a b$tch is all a woman has to hold onto." - Dolores Claiborne

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:ph34r::o:blink::angry::ph34r::(:huh::o:ph34r::(:angry:

SCOTT WOULD NOT ALLOW MY THOUGHTS TO BE PUT ON THIS SITE.

AS THEY SAY.........THE APPLE DOESN'T FALL FAR FROM THE TREE.

I THINK MARTHA RAISED A DAUGHTER JUST LIKE HERSELF. DIDN'T SEE THE SHOW TODAY AND I'M THRILLED I MISSED IT. WILL NEVER WATCH HER AGAIN.......THO I DON'T NOW. SHE WILL NOT GET ANY MORE VOTES OR ATTENTION FROM ME :ph34r:

JUDY


Judy in Southern CA

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True, but it is a start for a highly specialized first time publication.

In 2005 Martha's magazine paid circulation was 1,907,231 where as AARP was 22,668,583

Maybe what we need to do is try to work together write some stories on our own experiences to get for existing magazines.

If a few of us have stories written that might help to effect change or at least perception, it cant hurt.

Here are a few of the 2005 circulation figures of some magazines we could send "freelance" stories too.

READER'S DIGEST 10,155,054

O, THE OPRAH MAGAZINE 2,685,755

REDBOOK 2,384,102

MEN'S HEALTH 1,692,282

SUNSET 1,456,418

HEALTH 1,470,716

and obviously many others.

[quote name='kenlove' date='Feb 12 2008, 04:13 PM' post='397121'

There are 19,000+ members here as well as other celiac groups which should make an impact on someone?

A paid circulation of 10,000 members would make a lot of magazines happy!

I hate to break it to you but a circulation of 10,000 people doesn't qualify as a magazine for any major publisher.


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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Maybe we all need to think about an alternative to her publishing a magazine. There is obviously a need for a mass market consumer magazine that deals with food allergy issues. We would all buy it <G>!

So how do we go about convincing someone to publish one? Do we back Scott, our fourm founder who already publishes the newsletter and updates we get? Do we as a group approach Time-Warner publishing, Amex publishing or another major publisher?

.

Ken

A slightly differnt take from a magazine but I wonder how one would go about getting backing for public service announcements on Time Warner or any major TV network? Does anyone know of any 'outed' celiacs in the media or acting business that might be contacted for advice? Would there be a way to raise money to create a commercial spot? Anyone here involved in the media?

The poster who said what we really need is to get the word out about celiac this may be a good thing to think about.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Everyone has some very good ideas. I remember three years ago, no one knew what Celiac Disease was nor ever heard the word and gluten sounded like a school supply. The Celiac community has made tremendous inroads in public awareness. Without the strong lobby from groups such as Celiac Sprue Association, Celiac Disease Foundation, GIG, NFCA and many others, the Food Allergen Labeling and Consumer Protection Act of 2006 would never have happened. Product labeling gluten free would not be happening. Gluten free menus in restaurants would only be a wish. The quality and availability of gluten free products could not be found nor consumable. And, without this site, we would all be walking in circles talking to ourselves.

Contact some of these support organizations and offer a contribution or contribute as a local contact person. Be someone who a newbie can rely upon. Take someone to the grocery store, advise on your local medical community, help others in what to order at local restaurants safely, be a friend, hold a hand or sit down with them and have a Redbridge.

There are a lot of people out there advocating for us. Lets tap into those who do and gain strength as a collective whole. I appreciate their work on my behalf. :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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So will there even be any magazines at all? I am I reading it wrong?

I don't know what is being said in print but on the show M kind of said how it would be done.

She announced the "tie" even though she did state that Alexis had won the "popular" vote. :rolleyes: (Last I recall the pets hadn't even made it to 30%)

In what I call a dull, bored voice and expressionless face she said they could add a column in a preexisting magazine and just kind of left Alexis standing there.

Then she turned to Shara and made a big to do about it IMO. Her voice changed, her expression changed, her body language changed she got all excited about how we are going to have the special magazine, the little seasonal things, the special recipes...

I felt really, really sorry for Alexis standing there. She had a very uncomfortable look (rightfully so!!). IMO it was like one of those teenage mean girls set up where they invite you to a party just to be mean to you -- it looked just like that IMO. My 3 kids were watching it with me and they just looked at me and was asking what was happening!! I was still so upset last night that I told my DH that I was going to boycott Michaels and the company that makes her scrapbooking stuff (major deal in this house!!!!!). I am just so embarrassed.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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Everyone has some very good ideas. I remember three years ago, no one knew what Celiac Disease was nor ever heard the word and gluten sounded like a school supply. The Celiac community has made tremendous inroads in public awareness. Without the strong lobby from groups such as Celiac Sprue Association, Celiac Disease Foundation, GIG, NFCA and many others, the Food Allergen Labeling and Consumer Protection Act of 2006 would never have happened. Product labeling gluten free would not be happening. Gluten free menus in restaurants would only be a wish. The quality and availability of gluten free products could not be found nor consumable. And, without this site, we would all be walking in circles talking to ourselves.

Contact some of these support organizations and offer a contribution or contribute as a local contact person. Be someone who a newbie can rely upon. Take someone to the grocery store, advise on your local medical community, help others in what to order at local restaurants safely, be a friend, hold a hand or sit down with them and have a Redbridge.

There are a lot of people out there advocating for us. Lets tap into those who do and gain strength as a collective whole. I appreciate their work on my behalf. :)

Love everything you said. I think it is time i get my butt back in gear and try to start an support group here. I think im finally well enough to actually do this now and i feel im educated enough to try.

paula


gluten, casein and soy free

on low carb/low sugar diet

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I don't know what is being said in print but on the show M kind of said how it would be done.

She announced the "tie" even though she did state that Alexis had won the "popular" vote. :rolleyes: (Last I recall the pets hadn't even made it to 30%)

In what I call a dull, bored voice and expressionless face she said they could add a column in a preexisting magazine and just kind of left Alexis standing there.

Then she turned to Shara and made a big to do about it IMO. Her voice changed, her expression changed, her body language changed she got all excited about how we are going to have the special magazine, the little seasonal things, the special recipes...

I felt really, really sorry for Alexis standing there. She had a very uncomfortable look (rightfully so!!). IMO it was like one of those teenage mean girls set up where they invite you to a party just to be mean to you -- it looked just like that IMO. My 3 kids were watching it with me and they just looked at me and was asking what was happening!! I was still so upset last night that I told my DH that I was going to boycott Michaels and the company that makes her scrapbooking stuff (major deal in this house!!!!!). I am just so embarrassed.

So in other words she was playing an oprah that kinda just sits there with no emotion when stuff like this is talked about. I was talking to my mom about this stuff yesterday and she was like why dont we try to go threw tyra or i cant rememember who else she said yesterday.

I was even thinking of writing oprah since she is doing that pay it forward thing and see wht can be done there.

paula


gluten, casein and soy free

on low carb/low sugar diet

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That 3 years includes me. I had no idea until I was diagnosed. From seeing the messages on this forum it happens daily to others .

Being a 60's type troublemaker, :ph34r: I still like to stir the pot. We've made some amazing inroads in Hawaii with a lot more to come. When I was first diagnosed there was only one person listed in the support group for the state. Turned out to be a neighbor who's daughter once worked for me at the newspaper. Thats changed and in the last 3 years many celiacs have been diagnosed or moved here. The grocery stores who I have to work with anyway, now have a selection of gluten-free foods that they never stocked before. They all sell very well. As you know I'm working on educating the chefs and restaurants here too and have an appointment with the tourism authority to ask for $ to develop a gluten-free Hawaii guide.

Still I guess I'm frustrated as I want to do more and see the need for more national recognition or our situation.

Acting locally and thinking beyond that can't hurt and I know we have to crawl before we can walk but -- I guess what we really need is some sort of famous spokesperson to really bring this to the media forefront. That and a magazine or some centrally focused source of information that would assist all of us in things we may not get on the forum.

Sorry for running on like this --

Ken

Everyone has some very good ideas. I remember three years ago, no one knew what Celiac Disease was nor ever heard the word and gluten sounded like a school supply. .. .There are a lot of people out there advocating for us. Lets tap into those who do and gain strength as a collective whole. I appreciate their work on my behalf. :)

"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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http://www.celiaccentral.org/

Would Heidi Collins of CNN do as a spokesperson? She has done many PSAs, plublic speaking events and aired several report on CNN.

Ken, you do wonderful work. You are a great advocate!


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Seems great to have someone. We don't have TV here in the sticks so I've never seen her but every little bit helps.

Thanks for the web site too. Once I found this place I kind of stopped searching for other celiac sites.

Because of our fragile tourist based economy here, I feel it's essential that they pick up on this and develop guides for each Island or for the state.

Would like to see all you guys come to visit for a massive gluten-free potluck!

http://www.celiaccentral.org/

Would Heidi Collins of CNN do as a spokesperson? She has done many PSAs, plublic speaking events and aired several report on CNN.

Ken, you do wonderful work. You are a great advocate!


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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http://www.celiaccentral.org/

Would Heidi Collins of CNN do as a spokesperson? She has done many PSAs, plublic speaking events and aired several report on CNN.

Ken, you do wonderful work. You are a great advocate!

Lisa......read your previous post above...........SO AGREE.

There are a lot of people out there advocating for us. Lets tap into those who do and gain strength as a collective whole. I appreciate their work on my behalf.

I had just gone to get the Heidi Collins link and you have it. :lol: your fast lady

there were allot of videos on this site created by Alice Blast who i had the pleasure of meeting at a celiac support group.

I met Heidi and saw Alice again at the Philly gluten-free event. I say we keep in touch with these folks who are already working so hard for us. I tried to start a support group in my area with the support of a local health food store but found after I got all the lists called and the word out for about 90 people who were interested in forming this group..............the health food store............got their...........piece of the $$ with all the calls I made and DROPPED THE BALL TO SPONSOR IT... :ph34r: At the time I wasn't well enough to start and run it myself.............

It's sad that $$$$$$$$$$$ yells so loudly but that's the facts so.................I'll support those already in the trenches and working so hard for us. I'm done with begging the Oprahs and Martha's of the world.

I'll work in the 'trenches' and spread the word in the ways listed here.

Celiac.com is the best thing I've found for all resources and has had so much to do with my imporoved health.

judy

HA GUESS WHAT TIMING........JUST WENT TO CK EMAIL AND ...............HERE IS THE LATEST EMAIL NEWSLETTER FROM nfca...........

http://www.celiaccentral.org/Newsletter/Fe...ry_2008/486/#s9

ENJOY...........ALSO LAST NITE OUR LOCAL TV STATION DID A SPECIAL........WILL PUT LINK TO THE VIDEO

http://abclocal.go.com/wpvi/channel?sectio...&id=5755558

JUDY


Judy in Southern CA

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..

Celiac.com is the best thing I've found for all resources and has had so much to do with my imporoved health.

judy

I second that!

Don't know what I would have done without finding all of you!

ken


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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KEN,

I POSTED SOME ADDITIONAL LINKS AFTER YOU POSTED I THINK

YOU ARE REALLY AN INSPIRATION.

I HAVE MY TICKET :lol: WILL YOU MET ME A THE AIRPORT........... :blink::D:lol:

MY DREAM TO ONE DAY GET OVER THERE............STAY HEALTHY TILL I GET THERE :lol:

JUDY


Judy in Southern CA

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There is now a video snippet in her blog now. It is cut off before she goes on and on and leaves Alexis standing there.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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There is now a video snippet in her blog now. It is cut off before she goes on and on and leaves Alexis standing there.

BARFF............. :ph34r::angry: IT WASN'T THERE IS AM WHEN I CK'D TO SEE IF THERE WAS A VIDEO. WITH ALL THE WHOOP-LA............I THOUGHT THERE MIGHT BE. WONDER IF SHE GOT ANY EMAILS? :( SHE'S ON MY .$%$#%^^ LIST............... :angry:


Judy in Southern CA

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I hope the vote results even as applied will help raise awareness of celiac - not to mention allergies

However, it does seem that Martha has made a business decision that the pet magazine is a better product for her company

Call me crazy, but with Martha's announcement pre-set for the day of the Westminster Dog Show finals (one of biggest dog shows in US, televised on USA network), perhaps Martha's company had done some consumer testing before the vote even started?? Not to mention, potential ad base $ of pet products is giant vs. gluten-free. With the huge number of votes for the gluten-free/allergy topic, *someone* will notice. And we'll all be there to help make the good gluten-free ideas fly!

Martha may be on the one step forward, two steps back plan - oh well


gluten-free (except unintentionally) from 7 Dec 2007

3 gluten-free cousins and counting (1 gold standard, 1 pos blood/no endo, 1 self/dietary diagnosed)

suspect mother was celiac (also, cousin suspects my mother's twin is celiac)

Feb 08 testing 'normal range' for gluten antibodies, IBD and food allergies

Staying off gluten - dietary reaction is compelling for me!

"Hi, I'm the gluten-free diner at your table."

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Outside of March and July, I'll be at the airport!i'll be the guy fighting with the TSA people about pulling up in front to pick you up and being chased away after 23 seconds :D

KEN,

I POSTED SOME ADDITIONAL LINKS AFTER YOU POSTED I THINK

YOU ARE REALLY AN INSPIRATION.

I HAVE MY TICKET :lol: WILL YOU MET ME A THE AIRPORT........... :blink::D:lol:

MY DREAM TO ONE DAY GET OVER THERE............STAY HEALTHY TILL I GET THERE :lol:

JUDY


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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I seem to remember her advertising the contest as a "help me decide" thing. She never said that she was going to go with the idea that won the most votes. I was always under the impression that she was just using the voting to gage interest in each of the ideas and would make her own personal selection after seeing how the vote turned out. So while it's disappointing that we won the popular vote and didn't get chosen for the individual magazine, I'm not surprised. She took the top two in the popular vote and worked both of the ideas into her magazine empire. I'm sure if there had been three ideas all around 33% of the popular vote, all three would have been incorporated.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Outside of March and July, I'll be at the airport!i'll be the guy fighting with the TSA people about pulling up in front to pick you up and being chased away after 23 seconds :D

HA WHAT A RIOT................. :lol: IT SOUNDS LIKE THE PHILLY AIRPORT...........

IT'S NICE TO KNOW WE HAVE A CONTACT TO TELL US WHERE WE CAN EAT................ONCE...........WE SAVE THE $$ TO GET THERE. ;)


Judy in Southern CA

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Keep Saving! Bob Dylan once said "Money doesn't talk, it swears!" :rolleyes:

HA WHAT A RIOT................. :lol: IT SOUNDS LIKE THE PHILLY AIRPORT...........

IT'S NICE TO KNOW WE HAVE A CONTACT TO TELL US WHERE WE CAN EAT................ONCE...........WE SAVE THE $$ TO GET THERE. ;)


"Ryo tatereba mi ga tatanu"

If we try to serve both sides, we cannot stand our own ground.

Japanese proverb

Celiac.com - Celiac Disease Board Moderator

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No way on God's green earth could that have been a tie. I knew this was going to happen when they took the results off the screen. :angry:

Exactly right! I agree. That's when they figured they had to backpedal out of this one. Solution: take down the percentage tables. A "pet" magazine will not last as there are a good number of them, made by real pet organizations and who control the market already. I guess she's looking for a 2-3 year life span of her publicaton (business cycle) and then try to sell it and move onto something else.

I think this little trick (showing food allergies as having highest percentage then pulling the charts off) and switching it to another topic in the end has now made me never interested in anything else she or her group does. Won't buy her magazines nor her products..... from now on Martha Stewart who?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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