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Celiac Vaccine? Not For Me


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95 replies to this topic

#16 Celiac Mindwarp

 
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Posted 31 December 2012 - 03:49 AM

I don't want to find out in 10 years that they botched the clinical trials. Not exactly unknown. How about cleaning up food production and labeling? I really do believe we are the vanguard in learning to eat properly again. The rest of the west is mostly just poisoning itself more slowly than us.

That'll be a no for me thanks
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

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#17 GottaSki

 
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Posted 31 December 2012 - 07:38 AM

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!


Thanks Gemini - this is exactly what I would say - saved my thumbs a lot of exercise this fine morning - off to hike with youngest and tallest kid - 6'1" and still going - he removed gluten before teen growth - amazing to see - don't need a stinkin' vaccine in this family!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#18 Opa3

 
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Posted 31 December 2012 - 10:07 AM

To: GottoSki: Lisa, thanks for the OK. It's appreciated. :)
To: Captaincrab55: I don't know. I never had DH myself. My major sympton was chronic diarrhea.
To: To: Kareny: I deleted the voting booth, accordingly. Member input is sufficient.
To: Takala: I was on vacation. Just got back! :) Guilt trip, not intended <_< Everyone adult has their on choice to make, yes, no or not sure.
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#19 kareng

 
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Posted 31 December 2012 - 10:15 AM

To: GottoSki: Lisa, thanks for the OK. It's appreciated. :)
To: Captaincrab55: I don't know. I never had DH myself. My major sympton was chronic diarrhea.
To: To: Kareny: I deleted the voting booth, accordingly. Member input is sufficient.
To: Takala: I was on vacation. Just got back! :) Guilt trip, not intended <_< Everyone adult has their on choice to make, yes, no or not sure.


I didn't really care if you have a " poll" or not. Just pointing out to those who thought you might be a marketer that this isn't the place for a very scientific poll. Good place for a discussion. :)
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#20 Gemini

 
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Posted 31 December 2012 - 02:16 PM

Thanks Gemini - this is exactly what I would say - saved my thumbs a lot of exercise this fine morning - off to hike with youngest and tallest kid - 6'1" and still going - he removed gluten before teen growth - amazing to see - don't need a stinkin' vaccine in this family!


Enjoy your hike, GottaSki! We got some snow here in the East and I hope to go snow shoeing tomorrow. I have to break in the new pair I got from Santa!

6'1"???????? The youngest kid?????? Oh my, you have giant children! I never got past 5'4" because of Celiac.......wish I had known years ago as I would love to be taller.
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#21 JNBunnie1

 
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Posted 31 December 2012 - 02:21 PM

So how come there's no 'pending vaccine' for diabetes? Not to disparage the work that we do
to be gluten free, but come on, don't you think they should go first? :huh:
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If you're going through hell, keep going. ~Winston Churchill

#22 GottaSki

 
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Posted 31 December 2012 - 02:28 PM

The older two aren't short - but they definitely are not as tall as they would have been - still hope for the 19 year old son to grow a bit - drives him nuts that little bro is so tall.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#23 Pegleg84

 
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Posted 04 January 2013 - 07:34 AM

I know there working on clinical trials for a kind of "lactaid" for gluten - as in you could take it and maybe be able to handle a very small amount of gluten on occassion, or just protect yourself from CC when eating out. If they do manage to figure that out, and it works, and it's safe, then I'd take advantage of it on occassion.

No way will there ever be a vaccine. It's a genetically inherited auto-immune disorder. The day the find a cure for aids, then maybe we can have a bit of hope, but in the meantime, the gluten free diet works just fine, thank you.

And to Opa, keep in mind when you post things here to explain them in your own words, not just repost something from elsewhere or we all get suspicious. there have been sketchy snake-oil sellers on the forum before. Anyone who claims there could be a "cure" for Celiac is immediately and firmly debunked.
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#24 GottaSki

 
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Posted 04 January 2013 - 07:41 AM

I agree about the potential of the possible medication to "safely" ingest gluten - I will never intentionally eat gluten again, but would be nice to have a small bit of protection as we do live in a gluten filled world.

Never say never - I know some of the researchers involved in developing an AIDS vaccine - it is closer than you might think. Still I agree that it will be quite a long time before vaccines will be available - luckily our disease can be managed with our dietary choices.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#25 Opa3

 
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Posted 04 January 2013 - 06:33 PM

No way will there ever be a vaccine. It's a genetically inherited auto-immune disorder. The day the find a cure for aids, then maybe we can have a bit of hope, but in the meantime, the gluten free diet works just fine, thank you.

Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.
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#26 kareng

 
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Posted 04 January 2013 - 06:51 PM

Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.


About 30% of the population has the gene or genes that are currently recognized as associated with Celiac. They appear to be the type of genes that need a trigger to activate. There is info about that on many reputable Celiac sites.

Not sure what this " unbeliever" stuff is about? We do have a couple of genetic scientists who post on here occasionally. Not all genes are expressed. Some genes, like a recessive one, would not be expressed in the presence of a dominant one. Some genes need a cue to start. This is one of the things scientists/ doctors are trying to find in Celiac. Why one person with the genes gets Celiac and why another doesn't. Or why one person with the genes appears to have Celiac as a child but many don't get it until well into adulthood.

If one of our genetic scientists sees this, perhaps they could explain further for you.

http://www.curecelia...-celiac-disease
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#27 GottaSki

 
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Posted 04 January 2013 - 07:25 PM

Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.


I'm adopted so we have no idea where we got all three of my silly genes - nor why ALL of my children and grands got the luck of developing Celiac Disease.

From where we sit - your family is fortunate!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#28 IrishHeart

 
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Posted 05 January 2013 - 05:39 AM

Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.


I was going to say pretty much what Karen said , but I will ask you this:
Have they had genetic testing done? If not, how do you know they do not carry the genes?

I am the first one in my family to have diagnosed celiac disease,. No one else in my large family has it either--yet ---BECAUSE they have not been tested. Someone has to be first for it to be labeled a "familial disease".

Family members insist they do not have any celiac or gluten intolerance symptoms, yet I see their many autoimmune diseases and their "GERD" and IBS" and mood disorders.
Denial is a powerful thing.

Some of your family members could well be silent celiacs. We have a few members on here. (cool climates, love2travel) who are this type of celiac.They never exhibit typical symptoms (gastro) either, yet they had total villous atrophy upon biopsy.

The key words you use are: "to date anyway". So, you acknowledge that it can trigger at any time in predisposed individuals. It is more than just genes, by the way. It is a confluence of factors, or so the leading celiac researchers believe at this time.

We're not unbelievers. We're just realistic. We have read enough about autoimmunity and Celiac to know the reality of it.

My mother went gluten-free, never bothering with testing because she was wise enough to see her lifelong issues were gluten -related.
Her doc gave her big kudos for taking charge of her health. She feels fantastic.
My Dad surely died from this thing. The best doctors in Boston did not see it in him--but he may as well have had "Hello! I'm a celiac!" plastered on his forehead. He died from complications of this thing well before my symptoms triggered for good and I nearly died from this thing myself. I had no clue what celiac was until 2 years after his death, otherwise, I would have been able to see it in him myself.
One other cousin just went gluten-free on her own, despite negative testing
and has good health for the first time in her life.

My point? You cannot tell if you're a celiac by the absence of typical symptoms
and you sometimes cannot connect the dots between a plethora of symptoms either.


I doubt I'm going to see a reliable, safe vaccine it in my lifetime, but it may well help the future generations in my family. I suspect they are going to need it.
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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


#29 Takala

 
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Posted 05 January 2013 - 08:22 AM

The day this website starts having the various lobbyist trolls harassing the people for wanting to stick to a gluten free diet instead of being Big Pharma's ongoing lab rats, is the day a lot of other websites are going to start to take its place. My "job" here on earth, having taken decades to figure out what was making me (and others) sick, is not to create a situation for the future where various government entities and government contractors, think it's okay to deliberately ruin the food supply, and then tell people to take a vaccine if they cannot cope with the deadly results.
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#30 love2travel

 
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Posted 05 January 2013 - 03:30 PM

Yes, a GFD is the best way. But,

YOU are an unbeliever! If you are a competent geneticist, then explain to me "inherited." My father, mother, brother, sister, my 2 children never( to date,anyway) had celiac disease. Each shows no gluten intolerance symptoms either. My family eats everything. I wonder how I got celiac disease.

Through routine bloodwork it was discovered I have celiac disease. I did not see it coming whatsoever. I was not sick! You would not believe the shock. My doctor made me have biopsies done, partially so I would believe it. Well, my villi were perfectly flat. t took a few months for it to sink in. After the biopsy scare I made a list of 70 some things I wanted to eat one last time (which is now revised as I can make most myself). Then I went strictly and utterly gluten free. I was diagnosed as a silent celiac which at times has made it difficult as I cannot pinpoint anything. I still do not know what it feels like to be "glutened". In nearly two years it has happened (accidentally) twice. Both times I did not get sick but realized after the fact that the first time the product was mis-labelled; second time happened in a restaurant in Europe. However, I will NEVER, EVER ingest any gluten. EVER. My answer has sure changed from a year ago when I would have been willing to go back to gluten in a heartbeat. Thankfully I discovered this board! A very knowledgable, wise and helpful bunch. I am now older and wiser. ;)

I was the first iagnosed in my family but strongly believe my mom has it. Her symptoms list is L O N G. However, she does not want to know (AKA denial) . One of my second cousins has just been diagnosed, too (maternal side). My family is scared to get tested in case they have it. I find it very sad. If they actually researched it they would most certainly be chomping at the bit to get tested for their futures and the futures of their (little) children. They just cannot imagine not eating gluten ever again.

I firmly believe my diagnosis has saved my life.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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