Need Your Feedback On This....

[elye]

I am writer, and for quite some time now I have been thinking about a book idea. I would love to get feedback from all of you guys on this potential project.

I was diagnosed with celiac disease six years ago, and since that time I have heard and/or read hundreds of personal stories from other individuals who have trouble with gluten, and often the stories have dealt with their problems in finally getting the diagnosis. To me, this is a problem so big in our culture that it beggars belief how it is not talked about more.

I have read on this forum stories about people who were misdiagnosed with MS or lupus or IBS, put on expensive, side-effect-inducing drugs for years with no relief, and then finally getting the answer to all of their health problems after years, sometimes by stumbling upon it here. I have heard similar stories at the Ottawa chapter meetings of the Canadian Celiac Association -- individuals who are crippled with rheumatoid arthritis and neuropathy, depressed individuals who have only just started feeling well enough to attend the meetings, Crohn's sufferers, infertile couples ( this couple just last month) who all, finally, after years of suffering, discovered the CAUSE of their symptoms to be gluten.

What I want to do is collect as many stories as I can, from as many people in as many places as I can, and accompanied by a preface and editorial interjections from me, publish them together -- hopefully into a book if I can get enough sufferers to share with me.

This really needs to happen. Word needs to get out from people who have trouble with gluten and have been misdiagnosed. Reading real people's words, I believe, would be a real help in getting individuals who are exhausted, depressed, anaemic, cancerous, arthritic, etc., to wonder about their treatment and to explore the possibility of gluten intolerance/celiac disease. Doctors are not doing this. At least, they are not nearly in the numbers that they should be.

At this point, I need to know how many stories I can get. From the local chapter meetings I have several people who will gladly let me use their fascinating, sad and very important narratives. I know that this forum is an absolute gold mine of potential for this project -- since I became a member here, I have read so many stories about misdiagnosis that I can't even guess at the number -- thousands, maybe.

I would need people to email me their stories. These will be anecdotal, and I will be sure to point that out at the beginning of the book. No medical degree work or peer-reviewed studies are involved -- just real people talking. The stories can be as long or short as needed -- half a paragraph or five pages -- no limit either way. I am looking specifically for individuals who have spent a long time suffering with any/all of the myriad symptoms of celiac/intolerance, and want to talk about their final journey back to health after realizing that gluten has been the cause. Anyone who is interested, please tell me on this thread or PM me, and if I get enough of a response (BIG, BIG fingers crossed, here!) I will put up my email for submissions.

The person to whom I must give credit for spurring me into action on this project is the older lady that I found myself sitting beside at the celiac meeting in the summer. She told me that she had been diagnosed with stage one colon cancer. Her father had died from it as had her grandmother. She did her own research, found the connection to GI cancers and gluten, and immediately started a strict gluten-free diet. She held off on the radiation treatment, and her cancer eventually went away. Was gluten the cause of the cancer? She'll never know for sure, but her story is definitely worth people hearing. Incredible, and maybe a coincidence. But certainly a story worth hearing. She will be a part of this book, to be sure, if I can get it done!

[GFinDC]

Sounds like a great idea for a book Mlee. I think a few stories from a doctors point of view would be interesting to add also. Just a think.

[elye]

Sounds like a great idea for a book Mlee. I think a few stories from a doctors point of view would be interesting to add also. Just a think.

YES, and I have a girlfriend who is a GP. She would be happy to give me her spin on things, as she is in complete agreement that the disease is woefully and dangerously underdiagnosed....

The first group that I would send a copy of this book to is the health insurance companies. I have always seen them as a terrific potential vehicle for getting the word out on how many people are medicating themselves with potentially harmful, expensive drugs (which these companies pay for) when all that is needed is a diet change.

The second group would be our (Canadian) provincial government, and those of other nations with socialized health care. They need to examine the amount of taxpayers' money spent on unnecessary surgical proceedures, hospital stays and treatment directly related to mis- or undiagnosed celiac disease. Billions, probably....and again, it's a dietary change.

Then there is the rice industry. Boy, would they ever scramble to help sell this book... . . ..

[allergyprone]

this is a great idea i agree with gfindc that it would be interesting to hear it from a couple dr's points of views, I'd be happy to share my story (symptoms for 16 years, gluten-free for 2)

good luck

nicole

[Goof]

I say why not?? If there's a hole in the market for this kind of book, and it's something you are passionate about, do it!!! You can't go wrong with doing something you have a passion to do.

[elye]

I say why not?? If there's a hole in the market for this kind of book, and it's something you are passionate about, do it!!! You can't go wrong with doing something you have a passion to do.

Absolutely, and I have a lull happening right now in work projects, so the time is right. But for this work, it ain't just me -- if I proceed with something like this I need a LOT of input from a lot of people....hence this thread. It is my test balloon.. . ......

[Jestgar]

Do you want only dramatic stories? Or some more straightforward things as well?

What's your focus?

[elye]

Do you want only dramatic stories? Or some more straightforward things as well?

What's your focus?

Well, my target group is the huge one made up of people who are sick with all of the symptoms of undiagnosed or misdiagnosed celiac/gluten intolerance. They are the ones who I want reading this book and thinking, "holy crap, this sounds like me......how could all of the things I've been experiencing -- depression/numbness/joint pain/dental adnormalities/mood swings/infertility/you get the picture -- be caused by a protein I'm ingesting? Maybe there's more to this IBS diagnosis that I've been living with all these years.....I need to pursue this".......

And I realize that there is information out there, sources that lay out the 200+ celiac symptoms, but this would be different: it would really hit home because it would be personal accounts -- real people talking. There is also crucial information that people here can impart to others, info that is rarely seen in articles about gluten issues or talked about by doctors or specialists. The common occurrence of false negatives on the blood panel and/or biopsy, for example -- many of us on here have experienced this, and it is important for everyone to know about it. In my experience, docs aren't as forthcoming with this kind of thing......(perhaps they don't know about it). . . ...

SOoOoooOo...... straightforward, dramatic, rambling narratives, bullet points, I'll take it all!

[Harpgirl]

I think that this is a terrific idea! You ought to title it, Why your doctor can't figure out what's wrong and what they don't teach in med school My GI dr didn't seem to know much about it at all. A GI doctor!!! I would have thought that at least a specialist would know! I'll send you my story, but not at the moment. I'm currently suffering from a glutening, courtesy of my 1 year old. When I feel better and the brain fog lifts, I'll send you a pm.

[elye]

Why your doctor can't figure out what's wrong and what they don't teach in med school

Perfect title!

I also should say that these stories, if published, can be completely anonymous. Some people may want their names attached, and that would be fine as well. I will edit only for grammatical and punctuational correctness and idea continuity -- it will all be your words, barring any James Joycian stream-of-consciousness diatribes.....

[mushroom]

- it will all be your words, barring any James Joycian stream-of-consciousness diatribes.....

Well, there goes my story down the tubes!!

[elye]

Well, there goes my story down the tubes!!

:lol:

[nikki-uk]

Sounds an excellent idea Em-uh-lee!!

Happy to pass on Tel's story if you want it

[GFinDC]

Perfect title!

I also should say that these stories, if published, can be completely anonymous. Some people may want their names attached, and that would be fine as well. I will edit only for grammatical and punctuational correctness and idea continuity -- it will all be your words, barring any James Joycian stream-of-consciousness diatribes.....

Well, is the book going to have any conspiracy theories? Can't have a good book without a conspiracy or two. Jestgar's chickens look to be involved somehow.

Really a good idea for a book MLee. I'd be happy to contribute my woeful story. Do you need photo proofs of before and after poops? Proof is in the pudding. 'er something like that.

I think you are right, many people walking around all day, every day have celiac or gluten intolerance and don't know it. stories of sick infants that were not diagnosed, middle aged old farts that weren't sick as kids, sports figures that have celiac. Lots of material out there for sure. Kurt Cobain had it too right. It is awful wasteful for so many people to be sick for no good reason other than our medical doctors have their heads up their behinds. Ok, good segue back to the chicken conspiracy...

[elye]

I'd be happy to contribute my woeful story. Do you need photo proofs of before and after poops?

Absolutely. .. .....whatever you can give me.... In fact, perhaps I shall put the most dramatic before-and-after poop photos on the cover..... . .

A few years back on this forum, there were a couple of threads started about rallying Oprah to do a show on celiac/GI......at one point we even had a system down where forum members whose last names started with A to K would post something on her website about it on odd days, and L to Z members on even days, hoping that by inundating her staff someone would HAVE to pay attention.

I'm thinking of this as a similar thing -- Oprah had REAL people on her show telling real stories, and most often that's what makes people tune in and pay attention. Of course Ms. O would have involved doctors and a specialist, as well, as I would attempt to with this book. But it is the ordinary, everyday, suffering voice that people will listen to.. . . ....

[elye]

All right, anybody interested in sharing their sickness-to health stories with me for this project can email me at elye@bell.net. Don't worry about the length -- no such thing as too short or too long. Please pass the word along to anyone else you may know who has been diagnosed with celiac or GI after struggling with either no diagnosis or misdiagnosis. The more accounts I receive, the better my chances of getting this very important work out there! I am heading to the chapter meeting next week and plan to give a short speel and hand out my business card.. . . . ....

Fingers crossed!