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Celiac Vaccine? Not For Me


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#1 Opa3

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Posted 30 December 2012 - 06:55 AM

Reference: Celiac Vaccine? Not for Me
Allergic Living, Winter 2013, p. 61
by Shauna J. Ahern

Abstract: "Coming soon! A vaccine for celiac!"
"Researchers in the US, Austrailia, and New Zealand working hard to bring this celiac vaccine to market."
" According to the reports about it, the vaccine is meant to reprogram the immune system,
changing the intestines and the antibodies released by the body of a celiac so that person can tolerate
gluten."

I'm 67, and been at this gluten-free adventure for 30 years. I'm tired. I would try a vaccine. I would risk my health to help the younger folks amoung us to further our cause to find some relief. Would you?







Edited by Opa3, 31 December 2012 - 09:52 AM.

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#2 Takala

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Posted 30 December 2012 - 09:18 AM

You say you're "67" and supposedly gluten-free for 30 years ? Yet you just got here, and you're trying to guilt trip / get other aged people to lab- rat themselves for Big Pharma ?

That would be the same Big Pharma (and some other entities whom are involved in genetic screening and whom depend on USDA agricultural subsidies to grow certain crops) that have done nothing but fight against knowledge of the gluten free diet as a treatment for auto- immune disease caused by gluten intolerance, and who have sent their little trolls all over the internet to claim that the gluten- free diet is bogus ? They even have had this deliberate misinformation published in Forbes and as a guideline for TED conferences.

Same interests who are fighting tooth and nail against better labeling standards to declare GMO content, or undeclared gluten, such as barley, or who are perpetually "working on" a gluten free labeling standard for the United States that would be even worse than other countries?

Pharma doesn't have your health interests at heart. We have the relief already..... Don't Eat Gluten.

Humans are changing. You cannot vaccinate your way out of this one.

I would not even bother to vote. Go data- mine somewhere else.
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#3 kareng

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Posted 30 December 2012 - 09:37 AM

This will be a skewed poll because of the population that frequent this forum. A large percentage are newly diagnosed or in the process of being diagnosed. Another large segment are people with continuing issues, trying to figure out what is going on. Only a few of us are " healthy" and " settled into the gluten-free lifestyle". Those " healthy" ones don't need help anymore, so won't be part of this " poll".

Edited to fix iPad correcting of skewed to screwed! :)

Edited by kareng, 30 December 2012 - 09:58 AM.

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#4 IrishHeart

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Posted 30 December 2012 - 09:48 AM

I agree with Karen.

Any newly DXed person is going to see this poll and think "Hell yeah! Gimme the drugs and gimme back my bagels, dude!"

Me?

Hell no.

Eat gluten again? no thanks; I already almost died once.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#5 captaincrab55

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Posted 30 December 2012 - 09:58 AM

Opa3, Will this wonder drug help those with DH??
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I'm a New Man Without GLUTEN!

#6 Takala

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Posted 30 December 2012 - 11:30 AM

Also notice how cleverly the original poster used Shauna Ahern's name in the original post. Ahern, who is a professional cookbook writer and who's husband is a chef, always has a set of people following her around the 'tubes making a game out of trashing her on the internet.

Like this:

(link) http://washuta.net/blog/?p=633

Shauna is far too invested in food and her personal crusade is annoying to others in her orbit. There’s more to life than what you can put in your mouth from dawn to dusk.


From the comments from a blog called "Someone found my blog by Googling "i hate gluten free people". Reading the jumble of contradictory, nasty trash coming from the author, who claims to be either celiac or gluten intolerant, depending upon which past blog post you're reading, and who hates to cook (fine. whatever. :huh:) and who likes to eat junk food, (fine. whatever. :() I feel sorry for her, but somebody has to put their foot down and tell other people who are also trying to "represent" the celiac or gluten free community at- large by making much writing dissing other celiacs, and specifically dissing other celiacs and gluten intolerants for attempting to eat in public without getting cross contaminated, that they aren't all that legitimate, either. They are messed up. And they're mocking other people who are sick. And there could still be a vaccine "cure," and they'd likely still be really messed up. Because you can't just blend in with the larger herd of so- called "normal" human beings, by being too embarrassed to tell somebody it's okay to just pick the croutons off a salad.


I remember the gluten-free newbie fear of being glutened in a restaurant, the wish to make sure that everything is safe, but that wore off. Now, I know how to quickly and quietly navigate the terrain. I do not want special treatment. I want to go to a restaurant, very quietly check in—”I’ll have the salad, no croutons,” or “Burger, no bun please”—and not think about gluten for the rest of my meal; or I want to go to the place where I know I’ve ordered from a gluten-free menu before and just order from it without fanfare. Honestly, I don’t want to think about gluten at all. After all, I’m gluten-free.

I don’t want my life to be ruled by gluten, or by gluten-free, strange in its huge presence because it is a negation. I don’t want to be run by the need to eat, either. If gluten controls my social life, makes me speak its name every time I enter into a food-based give-and-take with another person, I am not in control, and I become defined by gluten. This, perhaps, is what tires people about celiac sufferers:everything is about gluten. It gets old fast.

_________
from the blog "Someone found my blog by Googling "i hate gluten free people."



from the comments, same blog:

....I'm a server in a high volume restaurant set in Zion natl park, so I interact with thousands of diners every season from all over the world.... what is clear to me is that this is simply another fad diet that has infected socio-culinary culture and has made life difficult for us lowly order takers.

...There is no need with most people; this is simply a new and popular twist on the Atkins diet that folks think they need and demand despite the monumental effort. I’m not saying that we won’t, or don’t like to go out of our way for any customer…that’s what we do and we do it with a smile. But once your predilection for that new and shiny diet imposes on others experience ( special attention equates to time away from other tables and longer overall wait times) it’s time to cut back and be a little more considerate. Next year it will be another diet and that tenth of an ounce of gluten in the chipotle dressing won’t matter much.[/b]




How would you like that creep to be your waiter ? "We" (that's the people with the legitimate medical need to avoid gluten) are mixed in with what he considers to be the rude people on fad diets, and it's difficult to tell the difference, so it's taking up too much of his time when he could be doing more volume at the regular tables.


I was particularly struck by the number of negative comments there, about Ahern complaining about lack of safe gluten free airport food choices, since being stuck (aka "trapped") in an airport on delay for hours and hours, because of flight cancelations, with the increased security and the lack of ability to carry- on a lot of gluten free foods through security checkpoints, is one of my definitions of hell, and certainly is violating the ADA. So this sort of reeks to high heavens that THESE PEOPLE think that if they can just blend in with the greater herds easier, they won't be noticed and singled out for greater scrutiny. Perhaps it all comes down to, they then think they can get thru an airport line quicker. They missed the entire point. ANYONE can have any physical, medical, social, political, or mental quirk declared "out of the ordinary," or "dangerous to others," and it is the job of bureaucracies to exploit that difference, in order to make up excuses for letting the for- profit segment then sort us into categories, to either be accommodated or browbeaten in to going along with being inconvenienced.
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#7 rosetapper23

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Posted 30 December 2012 - 11:44 AM

Yes, I fear that this vaccine won't protect me against DH.....so I'm uncertain whether I'd be interested in having the vaccine. On the other hand, my Sean can't wait to get it.

Even if GOT the vaccine, I would continue to eat a gluten-free diet....and would rely on the vaccine's effect to protect me against accidental cross-contamination at restaurants, etc. I wouldn't knowingly eat gluten, though.
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#8 Adalaide

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Posted 30 December 2012 - 01:15 PM

After a year, a single year, the smell of fresh baked bread makes me physically ill. I've had many discussions with my husband about pharmaceutical companies. In the end, they want money and we are an uncracked market. They're working on a pill that we can take so we can eat gluten, and a vaccine and blah blah blah. A year ago I was wondering how much longer it would be until something catastrophic happened and I was on the verge of death. The simple step of not eating gluten has turned my life around so completely that I don't even recognize my life now and it is wonderful. I am so sick of "your life sucks because you can't eat bread so we're trying to fix it for you." No, my life is better now that it has ever been. There is absolutely nothing that would get me to give those scum sucking, bottom feeding, dirtbags money so I could eat poison.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

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#9 Gemini

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Posted 30 December 2012 - 03:07 PM

After spending the last couple of weeks trying to help 3 (yes, 3!) of my friends who think they may have a gluten problem and get them started on a trial diet, and then listening to them complain, bitch, and become short tempered with me over what they percieve to be the diet from hell, I have thoroughly enjoyed this thread and think we have some brilliant people on here to have worded so well what I feel also. Like Irish pointed out......I already almost died once and am not in a hurry to do it again.

I am really trying to figure out why so many people think eating whole foods and a little gluten free goodies thrown in is so horrific that they would cheat or even consider taking a pill so they could eat a bagel again? I think the pill idea is wonderful IF it is designed as an aid to guard against CC while traveling BUT not to resume a full gluten diet again. Or a vaccine......nope. Doctors are just not that smart...the immune system is smart and has been out-thinking them all along.
Look at AIDS....it keeps morphing so there never is going to be a cure. They just manage it better and buy people time but there is no cure. We are the lucky ones with Celiac. We can manage it by diet alone and that diet is how people should be eating. I am beginning to really believe that gluten is like heroin and that is why so many people cannot get off of it successfully. Young people need to learn how to eat right and not rely on the AMA to pull their butts out of the sling every time they get sick. That is not normal behavior.

Anyway......you guys made me laugh with some of your remarks! It's nice to hang with people who get it because not many on the outside world do!
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#10 jerseyangel

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Posted 30 December 2012 - 03:12 PM

No way on Gawd's green earth I'm ever eating gluten again. It all but took away 25 years of my life. And I don't want a pill that is gonna tinker with my immune system--I've got enough problems with it.....
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#11 Adalaide

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Posted 30 December 2012 - 03:26 PM

I think the pill idea is wonderful IF it is designed as an aid to guard against CC while traveling BUT not to resume a full gluten diet again.

We are the lucky ones with Celiac. We can manage it by diet alone and that diet is how people should be eating.


I agree so much here on both points. On the off chance that the pill ever hits the market and after a few years they determine it isn't killing people I may start to use it as protection in restaurants and such. I would never use it to eat a bagel. I had a nightmare once where I ordered corndogs at a fair and started eating them without thinking about the fact that CORNdogs are made of wheat. I woke up hyperventilating and couldn't get back to sleep.

No way on Gawd's green earth I'm ever eating gluten again. It all but took away 25 years of my life. And I don't want a pill that is gonna tinker with my immune system--I've got enough problems with it.....


HAH!!! No crap! Every time a new drug comes out, they have it on the market a few years and wait til a few dozen people drop dead or develop really interesting diseases then pull it off the market. Our immune systems are complicated things, which is proven by the fact that once we get one we start developing a buttload more. I have no interest in poking my immune system with a stick just to see if I can get it to roll over. All I can think is that I'd get the vaccine and be one of those dead dozen that gets it pulled of the market... pass. I'm not going to risk my life for food.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#12 IrishHeart

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Posted 30 December 2012 - 04:08 PM

After spending the last couple of weeks trying to help 3 (yes, 3!) of my friends who think they may have a gluten problem and get them started on a trial diet, and then listening to them complain, bitch, and become short tempered with me over what they percieve to be the diet from hell, I have thoroughly enjoyed this thread and think we have some brilliant people on here to have worded so well what I feel also. Like Irish pointed out......I already almost died once and am not in a hurry to do it again.

I am really trying to figure out why so many people think eating whole foods and a little gluten free goodies thrown in is so horrific that they would cheat or even consider taking a pill so they could eat a bagel again? I think the pill idea is wonderful IF it is designed as an aid to guard against CC while traveling BUT not to resume a full gluten diet again. Or a vaccine......nope. Doctors are just not that smart...the immune system is smart and has been out-thinking them all along.
Look at AIDS....it keeps morphing so there never is going to be a cure. They just manage it better and buy people time but there is no cure. We are the lucky ones with Celiac. We can manage it by diet alone and that diet is how people should be eating. I am beginning to really believe that gluten is like heroin and that is why so many people cannot get off of it successfully. Young people need to learn how to eat right and not rely on the AMA to pull their butts out of the sling every time they get sick. That is not normal behavior.

Anyway......you guys made me laugh with some of your remarks! It's nice to hang with people who get it because not many on the outside world do!


Amen, sister! all of it.


No way on Gawd's green earth I'm ever eating gluten again. It all but took away 25 years of my life. And I don't want a pill that is gonna tinker with my immune system--I've got enough problems with it.....


Ditto , ditto ....and amen, sister!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 ravenwoodglass

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Posted 30 December 2012 - 04:32 PM

Wouldn't want a vaccine. Don't really understand how they can do a 'vaccine' for an autoimmune disease. Celiac isn't something that is caught like the measles, mumps or polio. I also almost died before I was diagnosed and there is no way I would ever injest gluten again. I would hate to be a celiac in the placebo group for the clinical trials.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#14 jerseyangel

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Posted 30 December 2012 - 04:38 PM

Don't really understand how they can do a 'vaccine' for an autoimmune disease.

That's the thing I've never quite understood either.
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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

#15 Chaff

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Posted 31 December 2012 - 01:22 AM

Even if the thing works, it just sounds...terrifying. A little too mad science for me, and you should see the pile of pills I'm taking now to heal up!

OK, now that I read the original post again, it's so un-scientific it's funny: "Reprogram[ing] the immune system, changing the intestines"...heh.

Does the end of "Braveheart" come to mind for anyone else?
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