Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Celiac Vaccine? Not For Me


  • Please log in to reply

95 replies to this topic

#31 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 05 January 2013 - 03:50 PM

I am another who is the first and only Celiac in my family. With the exception of one sister, no one will be tested, including various GI and mood problems among them.


  • 0
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

Celiac.com Sponsor:

#32 Celiac Mindwarp

 
Celiac Mindwarp

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,167 posts
 

Posted 06 January 2013 - 01:03 PM

My Mum refuses to get tested, clutching her M.E diagnosis. It makes me cry. The more I say the more she digs in. It makes it hard to share what is going on for me, because she thinks I am getting at her. Then there is my Grandma having blood transfusions every 4 weeks because they can't work out why she gets anemic and has low b12.

But I still wouldn't take a vaccine. And if my kids do turn out to have it, I will do my damdest to get them good food, no gmo,. The best thing about this stinky disease is that it has opened my eyes to the food industry. Once you know, why would you go back?
  • 0
- 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

#33 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 06 January 2013 - 01:14 PM

Then there is my Grandma having blood transfusions every 4 weeks because they can't work out why she gets anemic and has low b12.




THIS WAS MY DAD, Mw!!. He had blood transfusions for 8 years.
There is a reason.
It's malabsorption from celiac.
  • 0

"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


#34 Celiac Mindwarp

 
Celiac Mindwarp

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,167 posts
 

Posted 06 January 2013 - 01:30 PM

Breaks my heart. There seems to be no telling them. How can my mother watch her mother go through that and not even take a blood test to check?

Fear I am heading off topic, so just to put that right.

NO THANKS.
  • 0
- 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

#35 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 06 January 2013 - 02:11 PM

Breaks my heart. There seems to be no telling them. How can my mother watch her mother go through that and not even take a blood test to check?

Fear I am heading off topic, so just to put that right.

NO THANKS.


You're not heading off topic at all, hon ! It's just more examples of symptoms in our family members who think we're the "only"
celiacs in the family and that those symptoms are "not connected".
It breaks my heart too.
  • 0

"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


#36 Opa3

 
Opa3

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 94 posts
 

Posted 13 January 2013 - 02:49 PM

................. this board! A very knowledgable, wise and helpful bunch. I am now older and wiser. ;)


This topic was debunked. It was labeled a "might be a marketer", "sketchy snake-oil seller", and "lobbyist." for Big Pharma. At least no one called me a grumpy old man. :)
This board, absolutely a 110% group. With your replies, I'm a whole lot wiser too. I need to catch-up with the autoimmune -celiac link.
I'm not changing my position, just going to sprinkle it with a lot more realism/day. thank you

My family will not be tested. My mother is 90 years old and thinks it's her fault. Not to worry mon, it's self inflicted, I assure her.

Make progress, become well and stay well.
  • 0

#37 AlwaysLearning

 
AlwaysLearning

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 192 posts
 

Posted 14 January 2013 - 03:55 AM

I'm loving all of these posts that are anti-pharma and see right through a smoke screen. I LOVE smart people.

After years of trying to figure out what was wrong with my digestive system, I was actually excited that the solution didn't involve pharmaceuticals. I'm not anti vaccine, but I agree wholeheartedly with the previous comment about not wanting to tinker with my immune system which already has enough issues.
  • 0

#38 Pegleg84

 
Pegleg84

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 612 posts
 

Posted 16 January 2013 - 10:35 AM

Wow! I had no idea my two cents would cause such an uproar!

There's still so so much we don't know about Celiac, but it's not something you catch, so I've always had trouble thinking of any kind of "cure" for Celiac as being a vaccine. Maybe they will figure something out someday, but in the meantime we still have to stick to conventional methods (ie: gluten-free diet)

I am basically genetically cursed. There's Celiac on both sides of my family. Thankfully a lot of my aunts/uncles/cousins have been tested. Between both my mother and father's family, there are at least 8 of us (which results in great gluten free goodies at family gatherings). But genetics are weird (and I'm no geneticist), and I'm sure there has to be a first for every family.

And Opa, good on you for getting a great discussion going. I love this board for a reason!
Happy Healing all
  • 0

~ 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.


#39 Opa3

 
Opa3

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 94 posts
 

Posted 17 January 2013 - 09:29 AM

I am basically genetically cursed. There's Celiac on both sides of my family. Thankfully a lot of my aunts/uncles/cousins have been tested. Between both my mother and father's family, there are at least 8 of us (which results in great gluten free goodies at family gatherings). But genetics are weird (and I'm no geneticist), and I'm sure there has to be a first for every family.

And Opa, good on you for getting a great discussion going. I love this board for a reason!
Happy Healing all


Yes, it is a great discussion. Thanks. I don't believe you are "cursed." In fact, you are blessed to have such a great internal support group.
For me, I still have to bring my own gluten-free food to family gatherings.
  • 0

#40 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 17 January 2013 - 10:10 AM

For me, I still have to bring my own gluten-free food to family gatherings.


Most of us do! You are not alone. :)
  • 0

"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


#41 grodeylocks

 
grodeylocks

    Community Member

  • Advanced Members
  • PipPipPip
  • 62 posts
 

Posted 10 June 2013 - 07:23 PM

Vaccine and other types of celiac drugs are amazing. Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. A vaccine would be a life saver and would retrain you're immune system to accept gluten. This vaccine probably will also be beneficial to other autoimmune disorders. Why wouldn't you want to support the development of alternate therapies.


  • 0

#42 eers03

 
eers03

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 224 posts
 

Posted 10 June 2013 - 07:54 PM

1.  Every industry has good and bad--Pharma is no different.  I should remind a poster in this thread that there were a lot more people dying of cardiovascular disease in the 60's than there are today.  Thank you "BIG PHARMA" for blood pressure medicine that helps prevent strokes.  The reality is, when society puts money behind research for a disease state, things happen.  People that were dying with AIDS in the 80's have a much better shot at life if they are diagnosed today....  Thanks to...  Wait for it...  Pharmaceutical research.  Most of the algorithms used today by HCP's are the result of pharmaceutical research.  Don't get me wrong, they love to pad the coffers but every now and again we get some great therapies.

 

2.  I will stay on the sideline until more long term data surfaces.  Even at that, I plan to stay gluten free.  I know what my body and immune system are right now today and I can handle that.  Its better than the unknown of tweaking things with a vaccine that will alter my immune system.  Thats a little scary to me.

 

3.  There may be people out there that are having much more severe symptoms than me who need relief that it could provide.  I don't know that it will but I can see someone with refractory sprue looking for some relief.  


  • 1
Diagnosis 11/2012

#43 Sock

 
Sock

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 10 June 2013 - 07:55 PM

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.

I agree...the gluten free bagels are great anyway.


  • 0
"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." ~Dr. Seuss

#44 grodeylocks

 
grodeylocks

    Community Member

  • Advanced Members
  • PipPipPip
  • 62 posts
 

Posted 10 June 2013 - 08:09 PM

1.  Every industry has good and bad--Pharma is no different.  I should remind a poster in this thread that there were a lot more people dying of cardiovascular disease in the 60's than there are today.  Thank you "BIG PHARMA" for blood pressure medicine that helps prevent strokes.  The reality is, when society puts money behind research for a disease state, things happen.  People that were dying with AIDS in the 80's have a much better shot at life if they are diagnosed today....  Thanks to...  Wait for it...  Pharmaceutical research.  Most of the algorithms used today by HCP's are the result of pharmaceutical research.  Don't get me wrong, they love to pad the coffers but every now and again we get some great therapies.

 

2.  I will stay on the sideline until more long term data surfaces.  Even at that, I plan to stay gluten free.  I know what my body and immune system are right now today and I can handle that.  Its better than the unknown of tweaking things with a vaccine that will alter my immune system.  Thats a little scary to me.

 

3.  There may be people out there that are having much more severe symptoms than me who need relief that it could provide.  I don't know that it will but I can see someone with refractory sprue looking for some relief.  

We are pretty close to at least drugs that will allow us to have a defense against cross contamination and that is amazing., Imagine being able to eat out without having to worry.


  • 0

#45 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 11 June 2013 - 03:58 AM

 Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. .

I am curious where you get that 90% figure. I have very severe reactions and have been well able to avoid gluten now for many years. Did it take me a while to get the gluten free lifestyle down? Sure it did. It is however quite possible to avoid gluten once you learn what you need to do.  

There are some of us who have residual damage from years of misdiagnosis and damage to many different body organs. That residual damage doesn't mean we haven't recovered from celiac gluten free. It means that the organs that were damaged were not able to completely repair. Doctors are getting much better at diagnosing us earlier though so the numbers of us that are damaged for years before knowing that gluten was an issue are becoming much lower than even 10 years ago.

I personally would not have an interest in a vaccine. If others want to use one that is their choice. My big fear is that after one is developed doctors will push the pharmacutical 'cure' instead of advising people to change their diet. We already see that in folks with DH whose doctors prescribe Dapsone but never tell them the gluten-free diet will also will do away with the lesions without the risk of side effects.


  • 1
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)




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: