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Jnkmnky

Would You Cure Yourself If You Could....

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I would love to not have to worry about getting sick because a careless restaurant employee picked croutons off my salad or set my plate too close to the bread station.

Being gluten-free doesn't bother me, but I would like to be able to be safe from food.


Carolyn

"When the going gets weird, the weird turn pro. "

- Hunter S. Thompson

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Guest nini
I would love to not have to worry about getting sick because a careless restaurant employee picked croutons off my salad or set my plate too close to the bread station.

Being gluten-free doesn't bother me, but I would like to be able to be safe from food.

that's a really good point. I would like to not have to worry about that either, but I would probably still stick to a gluten free diet. Paranoia maybe? :P

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I don't mind being gluten free. I really don't, given the options (i.e. sick vs. not sick)

Having said that, I would "cure myself" in a heartbeat if I could.

Doesn't mean that I would eat bread etc everyday though.

:D But Jnkmnky, I could use one of those bagels you were talking about recently! :D

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I might stick to a gluten-free diet also, but it sure would be nice to not worry all the time!

Today at work we had to do testing on Carnation Instant Breakfast (the ready to drink kind that has barley in it) and I was washing my hands like no tomorrow because I was afraid that I would forget and make myself sick on accident.


Carolyn

"When the going gets weird, the weird turn pro. "

- Hunter S. Thompson

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My eating habits are not that different now than they were before gluten free. I was always pretty lo-carb ( I live on what I like to call a phase 1 1/2 of the south beach diet).

I would take a cure in an instant. To not have to worry, to not have to peruse EVERYTHING that passed near my mouth or skin, I could live without that. They are working on stuff. San Diego just got a huge grant to do celiac research, theres the zonulin people, and I read about a drug recently that doesn't cure celiac but that helps heal the gut for new gluten-free golks, which I am interested in, I believe its in the human trial stage.

I gave the U of Maryland Celiac Research people money. I want to be better.

Elonwy


Positive Bloodwork 7/8/05

Inconclusive Biopsy 7/20/05

gluten-free since 7/23/05

Never felt better.

"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

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I would love to take a pill just once, go out and have an absolute feast at a Szhecuan Chinese Food restaurant, then go back to gluten-free the next day. Lord, I would almost cut off my left arm just to be able to have my old chinese food feasts......

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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If they come up with a "cure" for celiac disease, a one time shot, a daily pill, a liquid, a surgery.... would you be interested in doing it? Do you think in YOUR lifetime, they will discover a cure for celiac disease that eliminates the need for a gluten-free lifestyle? Do you think it's worth it to spend money trying to concoct a cure? Just wondering where people stand. Money is being raised for awareness, for education, for ... a cure?? Is the money well spent on looking for a cure? Or is the money raised better spent on coming up with tasty foods, education and awareness?

if it were gene therapy, such that I genetically didn't have the problem any more, then I would probably do it, but still not make dramatic changes to my diet. if it were something more like a lactase pill, if it were expected to be highly effective, I'd take it for restaurant situations, but still try to get gluten free dishes.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I think eating the way I do now is the way I'm supposed to eat--I have found that I do much better when I limit (once a week) all other grains, and legumes. If it weren't for the Celiac, I would not have had the insight to change my diet. Once the gluten was completely out, I could clearly see that other foods were causing problems--and not just digestive ones. Just as I can keep the symptoms of Celiac under control by avoiding gluten, I am now able to have some control over my skin, joint, and even weight issues. That said, I would use a pill to ensure that I would not be accidently sickened by gluten--say by cross contamination (occasional use). Of course, even that would depend on the side effects, etc. Great question! :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Sure I would. As long as I am not one of the first ones to test it. I actually had a few Vioxx, before it got pulled. For me, avoiding gluten, is just too complicated. marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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If it were a pill or something, I would take it ONLY:

a) at camp (I go to sleepover camp)

B) while traveling

c) at some huge special event and the food looked AMAZING and I would never get to try anything like it again

I find I eat healthier than most of my friends, because I can't get things like chicken fingers, fries, hamburgers etc. So I wouldn't use it every day.

-Jackie :D


14 years old

Diagnosed with celiac disease in 1993

Totally gluten-free since 1993

"All there is in life is wheat...Oh, wheat! Lots of wheat! Fields of wheat! A tremendous amount of wheat! Yellow wheat. Red wheat. Wheat with feathers. Cream of wheat!" - Woody Allen, Love and Death

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I am probably the only one here, but he** yes I'd take a pill!!! I would probably not go totally back to ingesting the amounts of gluten I used to eat, but I would like to eat "normally" again (my normal is not necessarily the same as another persons normal). I'd like to not worry about did I eat something with gluten in it and not know it??? I'd like to do my grocery shopping in under half an hour again. I'd love to stop quizzing my friends as to what's in the food they prepared for me. Frankly, I find this diet a pain in the neck, so yeah, sign me up!! The side offects of the drug....could they be much worse than the side effects of celiac disease? You know, like cancer, death, etc???


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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I would definitely do it, unless it was something complicated or dangerous. I.e. surgery or a drug with a lot of side effects. I really miss being able to be "normal" and go out to dinner without worry. I'm not very good with food, even before this I had issues. In that I don't cook and when I think about cooking or preparing food I become extremely stressed. My diet has not become healthier like most of you, I eat the same thing almost everyday and I won't tell you what it is because it's pretty bad and I don't want anyone to know. :P Okay, I changed my mind, I'll share. I eat Peanut Butter Panda Puffs for breakfast, Amy's gluten-free macaroni for lunch with maybe some gluten-free pretzels, and then nachos for dinner. A couple times a week I go to McDonald's and get cheesburgers with no buns and fries. I'm not saying this is much worse than I used to eat before going gluten-free. But, I did have more options then. I understand that this is mostly my fault that I don't want to make the effort to cook stuff. I'm pretty lazy, I'll admit. But, anyways, I would do it.

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No way would I take a pill. The gluten-free diet is the best thing that ever happened to me. The problem with a pill is that the side effects would probably be worse than the disease itself. If you read the labels on a lot of pills they usually have a list of side effects a mile long. What kind of cure is that?


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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I probably would at some point, but it would be like five years after it was released. Because, with all the drugs being pulled from the market in the last several years, I just don't think the FDA/drug companies are being as careful as they used to about verifying the safety. It seems like the first few years a drug is released is really the final phase of the drug trials. <_< If there's no class action lawsuit filed against the drug company after five years, I'll try it. I've got to scary of a medical family history to take a chance that it causes something else on top of that that I have to worry about.

And with all of what I've learned, how much better I feel, how aware I am about how all sorts of foods effect me, how easy it is to eat healthy, how I'm not fighting cravings 24/7 anymore, I don't think I'd bother with something that actually "cured" it.

I would rather see a pill that counter-acted the effects of being glutened. So if I got glutened, I could take the pill and the effects would either be lessened or gone for that glutening.

And I agree with a previous poster that I'd rather the money go towards better food, wider availability of gluten-free food and a huge public awareness campaign than drugs.

It wouldn't be such a pain in the booty disease anyway if it wasn't for people rolling their eyes, being snotty and thinking you were overly paranoid or making it up. Maybe we should fund a drug for rudeness instead. :lol:

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I would probably take the pill occassionally in situations where it would be hard to get a gluten-free meal or something like that. Definately not an a daily basis.

I would be more interested in a pill for curing leaky gut and the extra intolerances that develop because of it. For me that is more of a problem than the gluten free diet.


Rachel

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No way would I take a pill. The gluten-free diet is the best thing that ever happened to me. The problem with a pill is that the side effects would probably be worse than the disease itself. If you read the labels on a lot of pills they usually have a list of side effects a mile long. What kind of cure is that?

Those side effects may happen, they don't usually. I know because I'm on four drugs right now, they all list things like nausea, headaches, dizziness and I have had none of those. Plus, even if you have side effects when you start out they usually subside after your body adjusts. And, most people who get side effects from some drugs say the side effects are not bad enough to make them stop taking the drug.

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If they come up with a "cure" for celiac disease, a one time shot, a daily pill, a liquid, a surgery.... would you be interested in doing it? Do you think in YOUR lifetime, they will discover a cure for celiac disease that eliminates the need for a gluten-free lifestyle? Do you think it's worth it to spend money trying to concoct a cure? Just wondering where people stand. Money is being raised for awareness, for education, for ... a cure?? Is the money well spent on looking for a cure? Or is the money raised better spent on coming up with tasty foods, education and awareness?
I would stick to the gluten free diet. I would prefer to put my money towards celiac awarness rather than a cure.

Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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I am probably the only one here, but he** yes I'd take a pill!!! I would probably not go totally back to ingesting the amounts of gluten I used to eat, but I would like to eat "normally" again (my normal is not necessarily the same as another persons normal). I'd like to not worry about did I eat something with gluten in it and not know it??? I'd like to do my grocery shopping in under half an hour again. I'd love to stop quizzing my friends as to what's in the food they prepared for me. Frankly, I find this diet a pain in the neck, so yeah, sign me up!!

Word. This is a no brainer. Yes, I eat better because of this disease...but it's a disease. And I don't want it anymore than I'd want to have polio or MS. So if there was a pill I could take once and it was 100% effective (or if it didn't always work, there'd be a reliable diagnostic that would let you know the pill was working and you could start eating gluten again), I'd take it in a microsecond and run as fast as my legs can carry me to the nearest Crispy Cream.

I always thought it was interesting what happened to gastric and peptic ulcers. It used to be that all these people had ulcers and if you had one it was because you drank and smoked too much and had a stressful job or home life. (And a lot of people back then DID smoke and drink too much...and had too much stress) And when someone developed an ulcer, their doctors told them to stop smoking and drinking and learn to deal with stress...which also happens to be a good idea regardless of whether or not you have an ulcer! There were all these books written about how to deal with your ulcer and how to cook/eat for your ulcer and there were support groups and cooking classes etc. If they followed their doctors' orders their overall health improved and the ulcer healed and in retrospect a lot of people felt grateful that their ulcers "made" them change their unhealthy lifestyles. BUT there were also all these people who had ulcers who quit smoking and drinking and saw some improvement but were still suffering. They went back to their doctors, assured them they were doing right things and the doctors would shrug and say, well maybe you're under a lot of stress. Maybe you should see a therapist. Maybe you're lying and you're smoking and drinking behind my back.

Then, one day the H. pylori virus is discovered and it becomes clear to the medical community that while the ulcer is exacerbated by an unhealthy lifestyle, it's essentially just this bacterial infection that can be wiped out with a single two-week round of antibiotics. Go figure! And then, boom, the ulcer all but disappears from the overall landscape. At the time, there were all these people concerned that this cure sounded too good to be true and that people with ulcers should say no to antibiotics and stick to their diets and health regimes etc. But then ultimately those arguments fade away too. At the end of the day, you've got a hole in your stomach that is getting bigger and bigger. Shouldn't you just go to the doctor and get rid of it already? Yes, people took better care of themselves when they had ulcers and didn't know about H. pylori...but there's no reason why people shouldn't take care of themselves irregardless of some disease that "forces" them to be "good."

Anyway, I really think that something like that is going to happen to Celiac. Someone out there is going to make a really important discovery about our immune systems and we'll totally start to look at Celiac and how to cure it in a completely different way than we do now.

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I wouldn't cure myself of what I guess is gluten intolerance. I also wouldn't want my son to cure himself of his celiac disease. I feel that the facts in the book Dangerous Grains point to gluten containing grains as unfit for our consumption. I know there are the people who have managed to be weeded out in a survival of the fittest kind of way, and they can tolerate the gluten to some extent. I just think looking for a cure goes against the nature of our bodies. We're actually trying to make a square peg fit into a round hole, so to speak. I see no need for finding a way to utilize gluten grains in our diets. I think we're better off facing facts, and looking into ways to make our gluten-free diet more palatable, more nutritious, ...

I agree with this, though I'd take it a few steps further.

As I see it, the grain is the problem. To alter the body's response to gluten is like trying to make the human body tolerate infections of deadly viruses. What I'd consider a "cure" is simply to reintroduce the types of wheat which had been growing before man got his hands on it and screwed it up. The genetics of the wheat aren't even close to what they were. That's the problem IMHO. If we can't eat the wheat even as it is supposed to be, then it's not intended for human consumption in the first place. Perhaps it used to be, but it's obviously not now. It's like eating any other non-edible plant.

There are actually people who are immune to AIDS, but that doesn't mean the rest of us have a disease.

Lots of foods on the market today have MSG in them. It's not good for anyone. It actually kills brain cells. It is responsible for much obesity, diabetes, and who knows what else. It's bad, and should not be in our food at all. The companies using it know what it does. They do it purposly, for profit. The difference between wheat and MSG is that wheat is still thought by most to be safe. On the other hand, MSG is known to the health-conscious consumer as a bad thing, so companies disguise it. I am wondering about wheat in this respect. That is, are those who create hybrids of wheat aware of what they have done? How long will they continue to do it once they realize it. What happens if/when awareness spreads to the general public? This I believe they fear greatly, if they know of the gluten problem at all.

Let us not forget how stupid and stubborn humans are with things. Case in point: Our use of petrolium continues to pollute the planet, even though we've known for some time now. We even fight for the stuff. Then people argue about whether we're gonna run out, while the fact remains that we must stop using it, or the entire planet will become unliveable. Just look what we've done in less than 200 years. Will man wake up in time? I'm betting he won't. History thus far demonstrates he's too thick-headed to straighten out before it's too late.

I doubt the level of awareness will really make a difference until the majority of the public is gluten intolerant. Even then what will be done about it? Most people live in denial or ignorence of something until it hits the 6 O'clock news. Then it fades from the headlines and nobody pays any attention to it. Meanwhile all sorts of illnesses and diseases are escalating off the charts, and researchers just go looking for more drugs. Get the picture?

I truely believe this planet is so doomed it's pathetic.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Yes, I eat better because of this disease...but it's a disease.

I disagree whith this quote. Celiac disease is a misnomer, in my opinion. It isn't a disease at all, but an extreme intolerance to gluten. You don't consider people with a peanut allergy or a pollen allergy diseased, do you? When they get in contact with the allergen, they get sick, or might die (as in peanut allergy), but they are healthy people who react to a substance their body has decided to reject.

People with celiac disease on a gluten free diet are healthy people. Unless they get accidentally glutened there is nothing wrong with them (unless they're still recovering from years of being sick because they didn't know they shouldn't eat gluten).

celiac disease is genetic, no pill or surgery is ever going to change peoples genes (other than in a petri dish on an embryo maybe). Therefore, I know that I'll never be 'cured'.

I wouldn't mind a pill that would help with recovery after being accidentally glutened, though, because I don't enjoy being miserable. :blink:


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I disagree whith this quote. Celiac disease is a misnomer, in my opinion. It isn't a disease at all, but an extreme intolerance to gluten. You don't consider people with a peanut allergy or a pollen allergy diseased, do you? When they get in contact with the allergen, they get sick, or might die (as in peanut allergy), but they are healthy people who react to a substance their body has decided to reject.

I sort of think of Celiac as a disease. I wouldnt call a person with a peanut allergy diseased but since Celiac isnt an allergy it can damage tissue without the person even knowing its happening. IMO.....if gluten is causing the immune system to attack your own tissues and can lead to such serious complications as osteoporosis and cancer....I'm thinking disease. Not disease as in "death sentence" but a disease nonetheless....a disease which is completely controlled with diet.


Rachel

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