Help Us Oprah!

[Lauren M]

Lauren

Thanks for that. I do agree with you eating disorders are diseases, but sometimes I do not use the right words, or put things as succintly as I should when I am a bit het up. I can sympathise with them, as I said. Being a freak of nature is probably the wrong words to describe us, so I will slap my wrist for that. But any disease is in a way a freak of nature, probably the wrong way to say it, again, but how do you describe it when nature has given you a raw deal in health matters? Bad luck?

Maybe how we talk, our slang and how we explain things in NZ is a bit different to the USA, and the last thing I want to do is offend anybody

Like you I do feel I have an eating disorder. But if I tell people that, they look at me and say really, as I am a little overweight. But food does scare me.

Never mind the witchyness, I deserved it. But this is one topic that seems to get me a bit hot.

No worries at all, and don't feel badly about it. I tend to be hyper-sensitive

It's hard not to be afraid of food, when for us, in some forms it truly is poison!

- Lauren

[schuyler]

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

I'd try it for sure

For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

I feel the same way; it's nice to see that I'm not alone.

[eleep]

Now that the NIH has launched an awareness campaign, perhaps we could get more attention? I'm just thinking that it sometimes takes multiple tries to get the right kind of publicity.

Actually, I might add that it seems like a lot of these kinds of public awareness campaigns seem to be tied to the release of specific pharmaceutical products. Depression didn't become a publicly-discussed issue until the advent of the SSRI era. Heh -- so it might be that the development of Zonulin has some effect on all of this.

[elye]

Yes, sad but true...no condition is going to be talked about too much until there are big, expensive drugs associated with its control. Celiac has a cure--diet--so the big pharaceuticals don't want anything to do with it. Zonulin may help to get them taking a second look.

...And maybe Oprah has stocks in the Zonulin company....

...Hell, she probably OWNS it!

[penguin]

Yes, sad but true...no condition is going to be talked about too much until there are big, expensive drugs associated with its control. Celiac has a cure--diet--so the big pharaceuticals don't want anything to do with it. Zonulin may help to get them taking a second look.

...And maybe Oprah has stocks in the Zonulin company....

...Hell, she probably OWNS it!

OFF TOPIC

Jeeze, Emily, look at that picture! You're way hotter than your poodle!

[elye]

OFF TOPIC

Jeeze, Emily, look at that picture! You're way hotter than your poodle!

Oh, I needed that...Excellent, Chelsea. Probably the only truly flattering pic of me in existence. And you ain't no standard poodle, yourself!

[evie]

Oh, I needed that...Excellent, Chelsea. Probably the only truly flattering pic of me in existence. And you ain't no standard poodle, yourself!

You gals are all so GOOD lookin, you would never know you had gluten problems. Maybe it is only while we are the sickest that we look so bum. question..is zonulin a med in the making? I thought it was a factor along/ gluten..I need to look back in things I saved where dd sent me something on it several months ago.

And you are all so Young!! Be glad you got diagnosed in your younger years!! evie

[GFBetsy]

This has not much to do with Oprah, but from all I've read, eating disorders such as anorexia and bulemia are associated with obsessive compulsive disorder, which is an anxiety disorder. Now, haven't I heard something about anxiety being caused by celiac? I'm sure I've read that somewhere . . . (Or should I say "everywhere".) So eating disorders may not be all that disassociated with celiac, anyway.

[Guest ~jules~]

Thats funny you all are trying, just the other day my husband suggested I write oprah. I told him I wasn't prepared to go on national t.v. and discuss my bowell movements with anyone BUT I do think its a good idea to spread awareness about our disease. My own friggin doctor who diagnosed me doesn't know anything about it, thats just crazy to me! Thank god for this group or I would'nt know half of what I do now. Julie

[tiredofdoctors]

I just wrote a rather lengthy letter to the producers of the Oprah Winfrey show. (Me, lengthy??!!! ) I explained to them that there are many more manifestations of gluten intolerance than just Celiac disease. I encouraged them to read Dr. Greene's book, and I also encouraged them to invite him to be on the show. I offered to go on the show (reluctantly -- I'm really good when I'm kind of anonymous, like here, but publicly I somewhat shrivel) to be a testimony to the fact that ALL gluten intolerance is not Celiac. Also, it would be pretty startling if I WALKED onto the stage (Armetta can tell you that), and let them know that GLUTEN has destroyed my brain to the point that this is how I walk, and am supposed to be in a wheelchair ALL THE TIME.

At any rate, should I hear anything back from them (which, let's face it, is doubtful), I will certainly let you know as soon as it happens.

Here's wishing us ALL luck . . . . .

xoxoxox

Lynne

[diagnosed5yrsago]

I sent an e-mail to the producers of the Oprah Winfrey show saying that they should do an episode on Celiac. I explained what Celiac is, what gluten is, why we can't eat it and how many people have that don't know it. I also mentioned how "un-informed" the medical field is about it too. Well, let's hope they care enough to follow up on it. (( ))

Well I hope it works I am 23 and was diagnosed 5 yrs ago and I just did a report on it because I am in med school and you are right no one ever knows what it is... I am thinking about writing someone because the prices for gluten free food is rediculous...

[Kaycee]

This has not much to do with Oprah, but from all I've read, eating disorders such as anorexia and bulemia are associated with obsessive compulsive disorder, which is an anxiety disorder. Now, haven't I heard something about anxiety being caused by celiac? I'm sure I've read that somewhere . . . (Or should I say "everywhere".) So eating disorders may not be all that disassociated with celiac, anyway.

This has nothing much to do with Oprah, but I am sure having coeilac has made me more stressed and anxious. I am getting neurotic.

Cathy

[Nic]

If you look on the "parents" part of this forum there has been 2 cases in which parents had their children taken away by protective services while trying to get them diagnosed with celiac. Apparently some doctors with too little knowledge of celiac decided that they were having unnecessary tests run on their children and claimed the parents have MHBP. When in fact the parents are Celiacs themselves. Those types of stories might make it to a talk show because they would make any mom in America watch. Not as many viewers may tune in for an show on something they have never heard of. As much as I love Oprah, I doubt she will put on a topic that won't appeal to the viewers. Kids being taken away falsely catches attention and could be a lead in to public awareness of Celiac Disease. I am not suggesting that these particular families would be interested in this but maybe there are others.

Nicole

[GFBetsy]

That would certainly draw people in. After all, when all you are trying to do is help your children be healthy, it is heartbreaking to be accused of child abuse instead. And it could happen to anyone who is trying to find answers that the medical community can't seem to supply.

[gfp]

Well I hope it works I am 23 and was diagnosed 5 yrs ago and I just did a report on it because I am in med school and you are right no one ever knows what it is... I am thinking about writing someone because the prices for gluten free food is rediculous...

Make sure you use a spell checker or they are unlikely to take you seriously, unless you still intend to write to the president in which case use small words but don't worry about spelling.

[tiredofdoctors]

THAT IS SOOOOOOO FUNNY! It's true. The more informed you appear, the better your grammar and the more succinct you are the more likely they are to take you seriously. I found that out years ago, having to write letters to physicians defending my findings and my patient assessment. With regard to the president, the smaller the words, the better! (Sorry, I was a W fan the first time, but after a couple of years in THAT presidency, began to wane in my belief in him. Now . . . don't ask.)

[lindalee]

The recent books I have been reading on celiac and other disorders regarding wheat, etc. suggest 50% are affected with problems due to these so called health foods. I think this is something the public would want to know. Oprah has been big on bread and trying to stop also she has had several topics regarding "poop".

Ibs - one of the most common health problems now- we know that is another word for we don't know.

Does the public? If we had all the people dignosed as IBS and more people asking about celiac. and more doctors getting educated....that would be a blessing.

Depression ... gluten causing that? Who would have thought that? Even the beauty aspect of the dark circles... So much info for her show. The list goes on.......

[gfp]

THAT IS SOOOOOOO FUNNY! It's true. The more informed you appear, the better your grammar and the more succinct you are the more likely they are to take you seriously. I found that out years ago, having to write letters to physicians defending my findings and my patient assessment. With regard to the president, the smaller the words, the better! (Sorry, I was a W fan the first time, but after a couple of years in THAT presidency, began to wane in my belief in him. Now . . . don't ask.)

Its very true, even things like handwriting make a big difference (I'd be lost without a computer).

It doesn't matter here but if you are going to write a letter to a TV programme (how do you spell that in the US?) .. then they are going to decide on your "intellegence" from that letter.

Having both dyslexia and terrible handwriting I found this out the hard way.

Also people seem less able to spell correctly when they are passionate about something.

I used to have to see lots of CV's... and people most regularly make mistakes in areas they are passionate about.. like sports and hobbies ... My personal favorite was selecting the ones who made mistakes in professional experience because then I had a good chance they were passionate about their job.

However for some reason, with all their training HR departments seem to discriminate against spelling mistakes... you'd have thought they would catch on..I personally used to hire them or certainly get them in for an interview and I found they were equally passionate about those subjects at an interview...

and as some of you may of noticed, being succinct is not my style!

[GFBetsy]

It doesn't matter here but if you are going to write a letter to a TV programme (how do you spell that in the US?) ..

program

[natalunia]

I used the "contact us" for a show idea function last night and gave my story and idea. Who knows if it'll work, but I am a teacher, and tend to not make too many grammatical errors and mispellings, so maybe that will help.

Maybe if I sent in a video tape with my plea. I am good on camera (Miss Texas USA pageant contestant in 1996) and a really good public speaker.... If we have no response from Oprah in 2-3 months, I will make a videotape of myself pleading our case and send it in. If anyone has any contributions to a script for me to go by, send me an email of it and I will start compiling what we need to say. I think if they see a pretty face with an intelligent voice, maybe they will be more likely to listen.

[tiredofdoctors]

I did put an "I'm looking forward to hearing from you soon. Thank you for your time and attention. I appreciate it very much. Sincerely"

I agree about the passionate part, GFP! When I was writing letters to docs, especially when I knew I was going to get a butt-chewing for my "opinion" of the patient's problem, I would make a bajillion spelling errors! I got so tired of reviewing, printing, discovering ANOTHER error, then reviewing again. OR, if I was writing to an attorney of a patient who was suing another person for an automobile accident, whatever -- I didn't want to get called in for a deposition, so I had to review OVER and OVER the letters!!!!

Maybe ol' Oprah's producers will hear our pleas . . . It would be SUCH a benefit to the people who are suffering with this disease whose doctors won't listen, or don't know enough to keep pressing to find the answer. Who knows . . . maybe this time we'll get to their hearts!