Getting celiac disease On National Radio

[RiceGuy]

There is a nightly radio show, which is very popular, and is heard nation-wide and over the internet. It's called Open Original Shared Link. This is the single most listened to late night radio show, with litterally millions of loyal listeners. It's no small deal by any means. They specialize in subject matter that isn't getting the kind of attention that it should, and health matters are one area frequently covered! In fact, they did a show which focused on casein just a couple days ago.

I have sent them an email explaining why Celiac disease should be discussed on the show. I told them about Dr. Peter Green (from the Celiac Disease Center at Columbia University) and Anne Roland Lee, an expert Celiac nutritionist. Also I referred them to the book called "Dangerous Grains", and Celiac.com of course.

I see no harm in driving the point a bit, so here's some addresses listed on their site:

Guest suggestions: CoastProducer@aol.com.

Lisa Lyon, Producer: lisa@coasttocoastam.com

Let's make it happen!

[nogluten-]

That's a great idea!

[VydorScope]

I dunno if thats ths best choice of shows, they are the ppl that spend alot of time with UFO, monsters in woods at night, and many other topics considered to be "wackos' type things. Alot of ppl state they listen for pure enjoyment at the wackoness of it. Every time I have tuned in its been some thing very far fecthed like a culture of aliens living underground doing tests on ppl at night.

Get celiac disease on their and ppl much associate it with that....

Just my 2 cents... better would be somthing more mainstream I think, espy on fo the heath shows that ppl listen to for health information...

[Guest kim07]

I dunno if thats ths best choice of shows, they are the ppl that spend alot of time with UFO, monsters in woods at night, and many other topics considered to be "wackos' type things. Alot of ppl state they listen for pure enjoyment at the wackoness of it. Every time I have tuned in its been some thing very far fecthed like a culture of aliens living underground doing tests on ppl at night.

Get celiac disease on their and ppl much associate it with that....

Just my 2 cents... better would be somthing more mainstream I think, espy on fo the heath shows that ppl listen to for health information...

To VydorScope-

Hello:

I agree with you on this one! If they are a radio station who mainly discusses topics of the "unusual" and "supernatural", maybe this station isn't the best place to discuss such an important disease such as Celiac Disease.

We want Celiac Disease to be more respected and of course more well-known, but who would really believe it if it comes from a station that mainly spends time focusing on subjects of the paranormal.

Just my 2 cents as well

Kim 07

[Jnkmnky]

I dunno if thats ths best choice of shows, they are the ppl that spend alot of time with UFO, monsters in woods at night, and many other topics considered to be "wackos' type things. Alot of ppl state they listen for pure enjoyment at the wackoness of it. Every time I have tuned in its been some thing very far fecthed like a culture of aliens living underground doing tests on ppl at night.

Get celiac disease on their and ppl much associate it with that....

Just my 2 cents... better would be somthing more mainstream I think, espy on fo the heath shows that ppl listen to for health information...

Haha! I agree. There's a woman in my town who's always plugged into this station with a little radio she carries around 24/7. She's stopped me to tell me all about the aliens among us. Other than that, she's pretty normal. But totally believes this hooey.

[jenvan]

Haha! I agree. There's a woman in my town who's always plugged into this station with a little radio she carries around 24/7. She's stopped me to tell me all about the aliens among us. Other than that, she's pretty normal. But totally believes this hooey.

hmmm, guess that would make it less credible of a program!

[Jnkmnky]

hmmm, guess that would make it less credible of a program!

Well, everyone can believe what they want. I don't care if she really believes there's aliens among us. You can't dictate what people will believe.... She did tell me that she heard about Celiac on her radio last summer. I don't know if she was plugged in to her alien station at the time, but she called me to let me know celiac had hit the "mainstream"... See, she really is nice! *just a little nutty*

[jenvan]

Well, everyone can believe what they want. I don't care if she really believes there's aliens among us. You can't dictate what people will believe.... She did tell me that she heard about Celiac on her radio last summer. I don't know if she was plugged in to her alien station at the time, but she called me to let me know celiac had hit the "mainstream"... See, she really is nice! *just a little nutty*

those are some of the best kind of people

[jerseyangel]

Ha Ha --This made me think of when my husband had a job where he had to travel frequently by car. He would always be on the road when this show was on and he'd tell me about the host and the people who believe that not only are there aliens among us, but some of them believe they are from a place far far away, too. That may not be the audience we have in mind.

[Nantzie]

I've always thought that the radio host that we should get to do this is Dr. Dean Edell Open Original Shared Link .

He's got a medical radio show that I honestly can't freaking stand. I've only heard it a couple of times on road-trips with my husband, so I'm not an authority on him, but he's the type of doctor who is really bad about putting down the notion of any sort of alternative medicine, AND any sort of self-directed researching on the internet to figure out what the heck is wrong. There was one man that called who said that someone told him that he might have a certain condition, and Dr. Dean scolded the caller for taking medical advice from friends, and made the well-meaning friend sound like a hypochondriac crackpot.

I don't know for sure, maybe I caught him on bad days and he's not usually like this, but MAN... I bet if your grandma made chicken soup for you, he'd call her a crackpot too.

I got the feeling that he doesn't really know anything about the internet or internet research, and thinks that it's a bunch of uneducated people writing their own uneducated opinions about things. I don't think he realizes that the NIH, the CDC, PubMed, and most of the medical journals have websites that ordinary people can access.

I searched on the site I found for him, and it didn't pull up anything on celiac or gluten. So I'm not sure if he knows about this or not.

So anyway, I was thinking that HE'S the guy we should try to target as getting something on his show. Since he's a hard-core sceptic, if he would talk about celiac in a real, UP-TO-DATE way, the awareness of celiac would just go through the roof overnight.

That's one of the great things about skeptics too. If you can convince them, they become the best advocates.

I'd bet anything that he's the type of doctor who hasn't read anything on celiac since medical school. If not, he'd be yelling it from the rooftops like the rest of us.

My FIL listens to him a lot, and I think that's how my husband got his recent "attitude problem" with me finding out about celiac. My FIL thinks that anything other than modern medicine is just someone trying to con you out of your money. But then he won't go to a real doctor for his health problems either. What-freaking-ever... Yea, we get along great... Actually we do. He's just... mis-informed.

Nancy

[nogluten-]

I almost never turn on a radio, so I guess I couldn't give info on that particular show or any radio show, but i hope people get more information on Celiac Disease some way. It is literally a life and death matter for some people.

[jenvan]

I do agree on the radio show idea though... Anyone listen to NPR??

[nogluten-]

I do agree on the radio show idea though... Anyone listen to NPR??

I don't since I don't drive to work anymore, but I used to sometimes listen to that station. My sister listens a lot. That would be a good one, I bet.

[frenchiemama]

Didn't NPR do a segment on Celiac not too long ago? In fact, I think I've heard at least one other reference to it on NPR.

Here:

Open Original Shared Link

[Nantzie]

Just did a little extra search on the website that has Dr. Dean - healthcentral.com. This is healthcentral.com's explanation of celiac.

Open Original Shared Link

Here's a little bit of it that shows how uninformed they are -

"While the precise mechanism of intestinal damage is unknown, it is clear that removal of gluten from the diet results in resolution of symptoms and intestinal healing in most patients."

They don't mention anything about it being autoimmune or that antibodies are released when a celiac eats gluten and actually attack the intestines.

They don't say it's rare, and they do say that sometimes there are no signs of celiac until middle or late adulthood, BUT they also are still saying that weight loss is a symptom with no mention of weight gain or normal weight. No mention of how common it has been found to be.

So WOW. Seriously out of date. Don't these people read their medical journals or anything?

I really think that radio programs are a great idea about getting the word out. A lot of people listen to talk radio while at work, so I think it would get to a lot of people.

Nancy

[RiceGuy]

I must say I disagree about the show being a bad place to discuss Celiac disease. It's not all about aliens and monsters. They are quite well respected, and the topics get a full three hours of honest and in-depth discussion. I listen nightly, and while they do look at paranormal stuff too, it's with real science, physics and logical points of view. They don't attack subjects and laugh it off. Some people listen for entertainment, but most like myself are listening to get informed, and those are the people who will be listening to such a topic. I found out a lot about casein from the show just the other night. I've learned a lot about health subjects from this show. Many doctors and nurses listen to get the information they can't get from medical journals, which really just push drugs. Those who listen for kicks will likely turn it off anyway.

Having real doctors and scientists on the show is something they always do. They don't ever bring on "wackos". The Celiac disease experts I named are good candidates, with real credentials. They don't allow people without credentials on the show at all, not even "just for laughs".

Anyway, it's not a "station". It's a really highly respected show with hundreds of affiliate stations all over the country. They frequently direct so much traffic to the website of a guest that the servers are overwhelmed! This site would get a ton of people looking at it, and I'm sure there would be a huge amount of new members who really need help with their health. While it's not "the six o'clock news", Celiac won't get there from where it is now. Change of this magnitude takes time, just as healing from Celiac takes time.

Don't underestimate the power of this show to get positive results. They are frequently way ahead of the mainstream press on many stories and topics.

[Nevadan]

One radio program I enjoy is NPR's "Talk of the Nation Science Friday" - runs from 11:00a-1:00p on my local PBS station - also available via the web. They cover a wide range of subjects. Their format is usually to have 2 or 3 "recognized authorities" give a brief overview followed by questions from listeners. I emailed them Friday's WSJ celiac article suggesting they use it as a basis for a segment - looks like a good fit.

George

[nogluten-]

The last two radio shows discussed sound interesting. I didn't realize radio had such fun stuff on it. I'll have to check them out.