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Celiac Vaccine Anyone?


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45 replies to this topic

#1 Tigercat17

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Posted 18 May 2011 - 01:25 PM

HI everyone,

I've been hearing a lot about the recent trails of the new celiac vaccine lately. It's sounds almost too good to be true. If it was approved by the FDA would anyone try it or would you just stick with the gluten free diet?

Myself, I'm a little skeptical. I was wondering what are the risks? And would it also cure an allergy to wheat? Since's it's so new - they are so many unanswered questions.... I would really have to think about it. Eating gluten free isn't so bad at all. It's a very healthy diet especially when you eat mainly fresh meats, fruits and veggies. It's just the cross contamination that gets me. :P

Ohhhhhhhh- but just thinking about going to my old favorite pizza shop makes me have second thoughts and eating without reading any label sounds like a dream come true.... :D


What do you all think?


http://celiacdisease...y-says.htm?nl=1
  • 0
Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

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#2 IrishHeart

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Posted 18 May 2011 - 02:52 PM

Personally, I'd wait until it was PROVEN in hundreds of celiac patients for MANY years before believing it would work. I am skeptical, too.

It's intriguing, but ....I could never be sick the way I was again.....not even for a taste of a gluteny bagel or pizza.

Actually, the ONLY thing I cry over is....my Mom's apple pie. That IS the BEST damn thing I ever ate in my life. I was born on Thanksgiving, and it was always my "birthday cake". And NO pie crust is like hers. It is orgasmic!! hehehe

If the vaccine REALLY works, I would get it and then, eat a whole apple pie made by Mom! :lol:
  • 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 

"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


#3 Mack the Knife

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Posted 18 May 2011 - 03:11 PM

Because I don't have the DQ2 gene I'm feeling a little ambivalent about the whole vaccine thing... but that is a little selfish of me.

I do think it is fantastic that all their research is paying off and that they are actually getting somewhere with a treatment for Coeliac disease. Kudos to them and all their hard work!

I think that by the time it is ready to be released to the public the vaccine will be very proven. They're saying that the vaccine is at least seven years away from being made available so I'm sure that a hell of a lot more work will be going into it before then.

http://www.coeliacso...dia Release.pdf
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#4 ravenwoodglass

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Posted 18 May 2011 - 03:22 PM

No thanks. I'll stick to the diet that has no side effects and that I know is working. I've taken enough drugs in my lifetime already and had a few that were pulled off the market because it was discovered after folks had been on them for years that they were not safe.
  • 3
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)

#5 shadowicewolf

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Posted 18 May 2011 - 05:38 PM

no thank you, i've seen first hand what some vaccines do to people.
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#6 adab8ca

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Posted 18 May 2011 - 06:29 PM

in a heartbeat, sign me up, first in line.
i am so sick of being sick
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#7 kellynolan82

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Posted 18 May 2011 - 07:57 PM

Because I don't have the DQ2 gene I'm feeling a little ambivalent about the whole vaccine thing... but that is a little selfish of me.

I do think it is fantastic that all their research is paying off and that they are actually getting somewhere with a treatment for Coeliac disease. Kudos to them and all their hard work!

I think that by the time it is ready to be released to the public the vaccine will be very proven. They're saying that the vaccine is at least seven years away from being made available so I'm sure that a hell of a lot more work will be going into it before then.

http://www.coeliacso...dia Release.pdf


I don't have the DQ2 gene either. So it won't work for me :(

It will only work for 90% of the coeliac population (i.e. the people who have the DQ2 gene who are affected by the disease).

Do you possess the DQ8 gene by itself by any chance?
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#8 Mack the Knife

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Posted 18 May 2011 - 08:11 PM

I don't have the DQ2 gene either. So it won't work for me :(

It will only work for 90% of the coeliac population (i.e. the people who have the DQ2 gene who are affected by the disease).

Do you possess the DQ8 gene by itself by any chance?


No. I don't even have the DQ8 gene. I'm one of the 0.4% of Coeliacs who don't have either gene.

They'll probably come up with A DQ8 variant if the DQ2 vaccine is successful... but I suspect they won't bother for the very small minority that's leftover.... and that kind of sucks.
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#9 cassP

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Posted 18 May 2011 - 09:49 PM

No. I don't even have the DQ8 gene. I'm one of the 0.4% of Coeliacs who don't have either gene.

They'll probably come up with A DQ8 variant if the DQ2 vaccine is successful... but I suspect they won't bother for the very small minority that's leftover.... and that kind of sucks.

i would imagine with the way the Big Pharma works- they'll just adapt it into the childhood vaccine schedule across the board- regardless of your genes.

ya, with 3 Autoimmune diseases- i'll forgo the vaccine.. really dont want another jolt to my immune system
  • 2
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#10 Takala

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Posted 18 May 2011 - 11:00 PM

This is under the same FDA that can't give this country a gluten free labeling standard, and under the same United States medical - industrial complex that can't diagnose people and if they do, they are still allowed to discriminate against them, right ?

If there is any way to screw this up so it would not work for me and cause dreadful side effects, they'll do it.

Then I'll have to take **** from "experts" on how irresponsible I'm being.

They know what they can do with themselves.
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#11 kellynolan82

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Posted 19 May 2011 - 12:29 AM

No. I don't even have the DQ8 gene. I'm one of the 0.4% of Coeliacs who don't have either gene.

They'll probably come up with A DQ8 variant if the DQ2 vaccine is successful... but I suspect they won't bother for the very small minority that's leftover.... and that kind of sucks.


I have the DQ8 gene but not the DQ2. I wonder if gluten free options will decrease in shops as a result? :(

I also think people will go back to eating all the breads in the shop (which contain a multitude of other stuff such as soy flour, preservative E282, etc. and more.

People won't even think about food. It will all be about the EASE!

EASE EASE EASE!!!

I believe many may inflict themselves with an array of other food problems shortly afterwards.
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#12 rgarton

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Posted 19 May 2011 - 12:46 AM

It seems odd that they would create a vaccine when its so easy to not use wheat and gluten, considering the diagnosis is on the rise every year, (its more than 1/100 people now!) why would they invent a drug to stop your body telling you that it really doesn't like what your giving it. I always say go with your instincts if your body is telling you something is wrong listen to it. I wouldn't take the vaccine.
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#13 ravenwoodglass

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Posted 19 May 2011 - 03:09 AM

"The study found that the Nexvax2 vaccine was well-tolerated, although people who received larger doses experienced problems more often with nausea and vomiting; seven of the 19 subjects receiving medium and large doses of the vaccine reported nausea, including two who took anti-emetics and two who vomited after the first dose, and one subject receiving the largest possible dose of the vaccine withdrew from the study because of severe gastrointestinal symptoms.

However, Nexvax2 didn't appear to cause abdominal pain, diarrhea or abnormal bowel movements, since the incidence of those potential side effects was similar between the vaccine-treated and placebo groups, the study said."

Well I had a little more time today to look at the article. First off they only used 34 people for the study and a fairly high percentage of those had side effects. Also they appear to only be looking at GI symptoms so who knows what is going on in the rest of the body systems. What exactly are they vaccinating against? Celiac is autoimmune it is not like smallpox or polio it is a genetic difference. I think they are misusing the term vaccine it seems to me this is more of a treatment that they will look to sell to folks with celiac associated genes before symptoms arise. Since not everyone who has celiac associated genes will develop celiac in their lifetimes will they sell this as a wonderful product if given to young children because only X number of them later develop celiac when many of the children might never have developed celiac anyway?
I would imagine this is also going to be a very, very expensive vaccine and personally I won't touch it.
  • 3
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 modiddly16

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Posted 19 May 2011 - 04:13 AM

I'd get the vaccine but only to help with getting sick when I was cross contaminated or accidentally glutened. I definitely wouldn't go back to eating gluten at this point in my life, I think my body would probably just reject it anyway BUT if getting the vaccine helped me feel better on those off days.....I'd be open to it!
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#15 IrishHeart

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Posted 19 May 2011 - 05:00 AM

No thanks. I'll stick to the diet that has no side effects and that I know is working. I've taken enough drugs in my lifetime already and had a few that were pulled off the market because it was discovered after folks had been on them for years that they were not safe.



I was not serious about taking the vaccine to eat Mom's apple pie. <_< Honestly, I have had the same experiences with drugs that Ravenwood has had...there's NO WAY IN HELL I would "TRUST" the FDA approval for Big Pharma drugs again. :angry:

It's the "symptom-treating", drug-loving medical profession that left me out to dry for 25 years. :unsure:

The ONLY relief I have had from all this madness has come from excluding gluten. Period. Someone on here said the coolest thing...to us, "gluten is like kryptonite'....and as far as I am concerned, This Supergirl can't fly when kryptonite is around.

I don't believe anyone's "promises" about medications anymore.
  • 5

"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 

"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



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