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Celiac Vaccine? Not For Me


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#46 IrishHeart

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Posted 11 June 2013 - 04:05 AM

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. 

 

 

90%--where did you get that statistic?? I'd like to see the source of that number, please ----because I honestly think that is incorrect.

 

It's not "virtually impossible" to avoid gluten. I do 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 

"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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#47 Brandiwine

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Posted 11 June 2013 - 04:41 AM

So proud of everyone who replied to these :)
We are Celiacs we are not a problem to be fixed. Finding that gluten was why I was so sick for so long has saved my life! It's saved my son from a whole list of sickly symptoms. We all want the best for our children, by getting this vaccine would be the same as saying something is wrong with him. I don't want him to have a desire to be like everyone else, I want him to be proud if who he is! Finding this has been a blessing to me and my family, I've gotten my mother (who has MS) to see the connection and she has talked to other family members who we suspect to have it all her immediate family who are considering testing. We are certain my uncle ( her brother) died from this. We hate we couldn't have found it sooner, but relieved to put a name on what has been poisioning us. I feel they should put the effort they put into conjuring this vaccine into Celiac awareness so we can save others not change them.

You all had GREAT things to say! I am proud to be a part of this board!!!! You are all some smart (gluten-free) cookies!!! ;)
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#48 Gemini

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Posted 11 June 2013 - 08:01 AM

So proud of everyone who replied to these :)
We are Celiacs we are not a problem to be fixed. Finding that gluten was why I was so sick for so long has saved my life! It's saved my son from a whole list of sickly symptoms. We all want the best for our children, by getting this vaccine would be the same as saying something is wrong with him. I don't want him to have a desire to be like everyone else, I want him to be proud if who he is! Finding this has been a blessing to me and my family, I've gotten my mother (who has MS) to see the connection and she has talked to other family members who we suspect to have it all her immediate family who are considering testing. We are certain my uncle ( her brother) died from this. We hate we couldn't have found it sooner, but relieved to put a name on what has been poisioning us. I feel they should put the effort they put into conjuring this vaccine into Celiac awareness so we can save others not change them.

You all had GREAT things to say! I am proud to be a part of this board!!!! You are all some smart (gluten-free) cookies!!! ;)

Amen to this!!!  As most savvy celiacs know, it is not impossible to avoid gluten and many more Celiacs heal than those who do not.  Only those who seem to be angry and resentful of this diagnosis seem to think otherwise.

The only thing Celiac really does is make people eat healthier,which many of those without Celiac should strive to do.  I must admit I would love a pill that would protect me while traveling from the dreaded cc but as for a vaccine, no thanks.  I don't know any other way to eat now.


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#49 Pegleg84

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Posted 11 June 2013 - 09:02 AM

Really, calling whatever drug therapy they're trying to develop a "vaccine" is a misnomer. If I'm not mistaken, a vaccine protects you from contracting a disease in the first place, usually a contagious one (flu, measels, malaria, etc etc). In order to prevent someone from getting Celiac disease, you'd have to change their genetics!!

 

Just a point.

 

And yeah, wherever this "90%" business is coming from, I'd like to know. Eating entirely gluten free is NOT impossible. A lot of work, but we do it.


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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.


#50 kareng

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Posted 11 June 2013 - 09:39 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.

 

 

Did you know one of the rules of this forum is to have a reliable source to support facts that are not common knowledge?  Please share this info with us. 

 

I believe the Univ of Chicago says its about 50% which includes all Celiacs - those that are not very careful as well as those that are careful with their diets.  I will look now for that link and post it here shortly.

 

I know from personal experience - all long time Celiacs I know are healed after a few years on the diet.  But they are careful.  There are a few I know that never get their antibodies normal but they are "take the burger off the bun Celiacs".


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#51 kareng

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Posted 11 June 2013 - 09:42 AM

I can't find the one I saw last night that said 50%.

 

http://www.curecelia...guide/treatment

 

"For many people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage."     If it was 90% unhealed,  I would think they would say for a few people.

 

I'll keep looking.


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#52 Adalaide

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Posted 11 June 2013 - 11:18 AM

You can find statistics that say pretty much whatever you want if you try hard enough.

 

http://celiacdisease...iac-Disease.htm

Here it says 1 in 10, so 10%, suffer from Refractory celiac disease.

 

http://scdlifestyle....ee-isnt-enough/

This one says that the intestines of up to 60% of patients never completely heal. "In one study of 241 Celiac Patients – small intestine mucosal recovery 2 years after following a Gluten-Free diet was 34% and 5 years later was only 66%." and “Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD”

 

http://www.healthnow...ase-never-heal/

This one has a staggering 72% listed as the percent that doesn't heal.

 

Still... I can find nothing stating any sort of 90% statistic other than the random spattering of 90% of celiacs are undiagnosed stat.


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#53 IrishHeart

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Posted 11 June 2013 - 11:40 AM

You can find statistics that say pretty much whatever you want if you try hard enough.

 

 

 

:)

 

"2 percent trust everything they see on the Web"

 

http://www.huffingto..._n_1686242.html

 

.


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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 

"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


#54 Ksee

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Posted 11 June 2013 - 01:22 PM

I read the initial post as a quote for discussion. I am not sure why Opa has been bashed en mass. Not that everyone is bashing but many of you are, for what reason? What if it wasn't meant the way you decided to take it? What if Opa only wanted to know what someone else thought? We want others to be generous with their responses to us, can't we clarify before jumping on top of someone with both feet?

 

I just looked this thing up, it's called Nexvax2 developed in New Zealand. I don't know what the rules are there but in the US the word "vaccine" would be a misnomer. This is basically the same as old fashioned allergy de-sensitization. My first thought is, that would mean it could worsen or even cause DH but I don't know that, it's only a guess.

In the US drug trials aren't done like this so I'm not sure how advertising online for research subjects will affect the research outcomes either. The FDA in the US has nothing even resembling de-sensitization of celiacs mentioned.  

 

Could this medication turn out to be useful? It might if it works, is properly used, and marketed. If someone who is super sensitive or has a traveling lifestyle that leads to being accidentally glutened and the medication works as intended, it might improve the health of those people. In that way it could be used and marketed but not as a cure for something that can't be cured or as an excuse to abuse the body.


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#55 IrishHeart

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Posted 11 June 2013 - 02:30 PM

I read the initial post as a quote for discussion. I am not sure why Opa has been bashed en mass. Not that everyone is bashing but many of you are, for what reason? What if it wasn't meant the way you decided to take it? What if Opa only wanted to know what someone else thought? We want others to be generous with their responses to us, can't we clarify before jumping on top of someone with both feet?

 

 

 

 

It does appear that OPA was sort of jumped on at the beginning (what you do not know is he had a poll attached to it with questions ) but no one else has" bashed" OPA en masse--. I do not really see that anywhere.

 

He did want to know what we thought and he got our thoughts and he has since said

 

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

 


Edited by IrishHeart, 13 June 2013 - 01:03 PM.

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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 

"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


#56 Ksee

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Posted 11 June 2013 - 02:48 PM

Irish I wasn't taking aim at you in that post or this. You will have to tell me why you feel personally chastised. I clearly said then and now that I did not include everyone. 

In fact, due to my eyesight my screen has to be enlarged to a point where I don't see the names of who says what unless I scroll left to find out. In some cases I do scroll left and have found you be a voice of calm.

In this case I didn't look to see where all the negativity was coming from because there were four pages of it. I will say that there were not many ways for Opa to respond in the midst of all that.


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#57 kareng

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Posted 11 June 2013 - 02:57 PM

Irish I wasn't taking aim at you in that post or this. You will have to tell me why you feel personally chastised. I clearly said then and now that I did not include everyone. 
In fact, due to my eyesight my screen has to be enlarged to a point where I don't see the names of who says what unless I scroll left to find out. In some cases I do scroll left and have found you be a voice of calm.
In this case I didn't look to see where all the negativity was coming from because there were four pages of it. I will say that there were not many ways for Opa to respond in the midst of all that.


This thread was handled and dormant until someone opened it back up yesterday (?). We are now responding to the new " guys" posts.

We do not discuss any disciplinary actions that may or may not have taken place with other members on this fourm. Not sure if that answers your question or not.
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#58 IrishHeart

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Posted 11 June 2013 - 03:22 PM

Irish I wasn't taking aim at you in that post or this. You will have to tell me why you feel personally chastised. I clearly said then and now that I did not include everyone. 

In fact, due to my eyesight my screen has to be enlarged to a point where I don't see the names of who says what unless I scroll left to find out. In some cases I do scroll left and have found you be a voice of calm.

In this case I didn't look to see where all the negativity was coming from because there were four pages of it. I will say that there were not many ways for Opa to respond in the midst of all that.

 

 

Not sure what that means....Everyone has a chance to respond.

 

This is a "forum". This is what happens, hon---. people reply and they all have a right to express their opinions. (even if we all disagree, there is room for discussion)

 

I am glad you find me a voice of "calm" and I am sorry you cannot see the screen to tell who is the poster

that you wish to take issue with..I am sure that is very difficult for you.  :(

 

 

But, I am doing that right now, hon...being calm ...and my earlier post was meant to be "calming"

 

There was a discussion, carefully moderated all along and Opa had as many opportunities to reply as we all do...just compose a message and push send. 

 

I hope this answers your questions? Best wishes.

 

 

**please note, I have edited this post after a PM from member KSee.


Edited by IrishHeart, 13 June 2013 - 11:18 AM.

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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 

"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


#59 Brandiwine

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Posted 11 June 2013 - 04:23 PM

I'm sure when this topic was posted it was with good intentions, I suppose we all are passionate about it and so it's easy to get a little carried away. Plus it's hard to read tone in text. I think we're all here for the right reasons and I'm thankful for you all, and all if your posts that's how I've learned what I have.

*Good Vibes* :)
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#60 grodeylocks

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Posted 15 June 2013 - 11:33 AM

90%--where did you get that statistic?? I'd like to see the source of that number, please ----because I honestly think that is incorrect.

 

It's not "virtually impossible" to avoid gluten. I do it. :)

Not incorrect at all, and is exactly the reason we need other options in addition to the gluten free diet.  http://www.ncbi.nlm....pubmed/19302264


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