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Celiac Vaccine? Not For Me


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#61 IrishHeart

 
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Posted 15 June 2013 - 11:45 AM

Okay, grodeylocks,

 

 I read the study you posted the link to and I still do not see where it says 

 

"that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. "


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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


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#62 grodeylocks

 
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Posted 15 June 2013 - 01:00 PM

Okay, grodeylocks,

 

 I read the study you posted the link to and I still do not see where it says 

 

"that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. "

"After a median 16 months GFD, 38 (8%) patients had histological 'normalization'". That means even with a complete gluten free diet the other 92% never fully recovered to normal.


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#63 Adalaide

 
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Posted 15 June 2013 - 01:13 PM

"After a median 16 months GFD, 38 (8%) patients had histological 'normalization'". That means even with a complete gluten free diet the other 92% never fully recovered to normal.

 

http://jcp.bmj.com/c...t/55/6/424.full

 

From the "take home messages" of this study: "It is not uncommon to find a raised intraepithelial lymphocyte (IEL) count with normal villous architecture in the duodenum"

 

This means that of the "(65%) had 'remission' with persistent intraepithelial lymphocytosis" that saying that they aren't healed is clinically irrelevant and wrong.


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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

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#64 grodeylocks

 
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Posted 15 June 2013 - 01:22 PM

Got it from this study. http://www.ncbi.nlm....ubmed/19302264  Dapsone is a gnarly drug for sure. The drugs in development now are showing some promise. The approach by Alvine Pharmaceuticals was to actually design proteases which specifically target and break down the inflammatory sequence markers that elicit the whole immune attack when exposed to the wheat, barley or rye gluten. These should have no more of a side effect than digestive enzymes do. What is interesting to note is another study (http://www.ncbi.nlm....pubmed/22298027) which shows that for a good portion of us, prolamines in corn are causing an immune response as well.

 

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.


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#65 grodeylocks

 
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Posted 15 June 2013 - 01:26 PM

http://jcp.bmj.com/c...t/55/6/424.full

 

From the "take home messages" of this study: "It is not uncommon to find a raised intraepithelial lymphocyte (IEL) count with normal villous architecture in the duodenum"

 

This means that of the "(65%) had 'remission' with persistent intraepithelial lymphocytosis" that saying that they aren't healed is clinically irrelevant and wrong.

There is a difference between saying the word healed and completely back to normal. There is clear evidence for the need for alternative therapies and that is the bottom line. We should be embracing the development of alternative therapies to be used in conjunction with a gluten free diet.


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#66 grodeylocks

 
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Posted 15 June 2013 - 01:33 PM

Also, even years after being completely gluten free, as shown in this study by Dr. Fasano (http://www.ncbi.nlm....pubmed/16635908) zonulin levels remain remarkably more elevated when compared to normal healthy intestines. This may explain all of our secondary intolerances as macromolecules are more easily allowed to seep through the epithelial paracellular space. The drug being developed by Alba which is targeting the zonulin pathway could be beneficial for us in this way as well.


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#67 IrishHeart

 
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Posted 15 June 2013 - 02:10 PM

"After a median 16 months GFD, 38 (8%) patients had histological 'normalization'". That means even with a complete gluten free diet the other 92% never fully recovered to normal.

 

 

"We extracted information on 465 consecutive coeliac patients studied before and during GFD"

 

465 adult celiacs

 

in ONE study--many of whom had remission of symptoms

 

over  a short time period

 

 

This does not equate to saying that "more than 90% of  celiacs do not recover on a gluten free diet"


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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


#68 grodeylocks

 
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Posted 15 June 2013 - 02:16 PM

"We extracted information on 465 consecutive coeliac patients studied before and during GFD"

 

465 adult celiacs

 

in ONE study--many of whom had remission of symptoms

 

 

This does not equate to saying that "more than 90% of  celiacs do not recover on a gluten free diet"

The science points in that direction. You can say whatever you want but the science speaks for itself and you can't argue with that. I've already shown you that over 90 percent of celiacs dont recover on a gluten free diet alone and by recover I mean return fully back to normal. My point is that clearly we need more weapons at our disposal in addition to a gluten free diet and so I support full-heartedly big Pharma and their efforts at addressing the needs of celiac.


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#69 IrishHeart

 
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Posted 15 June 2013 - 02:29 PM

The science points in that direction. You can say whatever you want but the science speaks for itself and you can't argue with that. I've already shown you that over 90 percent of celiacs dont recover on a gluten free diet alone

 

I see one study that shows that some celiacs do not recover their full intestinal mucosa on a gluten-free diet.

 

You are taking that one study and manipulating the math to make a blanket statement about all the diagnosed celiacs in the world that is simply untrue,

 

Admittedly, I am no math whiz, but I am a linguist and your statement, based on one study, is a non sequitor.


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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


#70 Adalaide

 
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Posted 15 June 2013 - 02:52 PM

The science points in that direction. You can say whatever you want but the science speaks for itself and you can't argue with that. I've already shown you that over 90 percent of celiacs dont recover on a gluten free diet alone and by recover I mean return fully back to normal. My point is that clearly we need more weapons at our disposal in addition to a gluten free diet and so I support full-heartedly big Pharma and their efforts at addressing the needs of celiac.

 

The study does state though that they have full remission of symptoms. So if they a very small amount of unrecovered physical scarring, which is basically what a single study is pointing to, then I don't see the problem. That is like saying that 90% of burn victims have scars. Well no shit Sherlock.

 

Another problem with any study of this nature is that the people doing the study do not have complete control of the diet and environment of the participants. This means that there is no way to know what "gluten free" means to each of them. For one it means a completely gluten free house and the strictest of standards eating out, or not eating out at all. For another (me), while I have the strictest of standards eating out, and in my home, I do not have the control I would like and have a shared home, many do. Many eat out frequently, eat things like Domino's pizza and a large amount of fast food and things with a "processed in a facility" warning. And many still are "take the bun off the burger" celiacs. There is simply no distinguishing between them in the study.


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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


#71 Lisa

 
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Posted 15 June 2013 - 03:12 PM

The study does state though that they have full remission of symptoms. So if they a very small amount of unrecovered physical scarring, which is basically what a single study is pointing to, then I don't see the problem. That is like saying that 90% of burn victims have scars. Well no shit Sherlock.

 

Another problem with any study of this nature is that the people doing the study do not have complete control of the diet and environment of the participants. This means that there is no way to know what "gluten free" means to each of them. For one it means a completely gluten free house and the strictest of standards eating out, or not eating out at all. For another (me), while I have the strictest of standards eating out, and in my home, I do not have the control I would like and have a shared home, many do. Many eat out frequently, eat things like Domino's pizza and a large amount of fast food and things with a "processed in a facility" warning. And many still are "take the bun off the burger" celiacs. There is simply no distinguishing between them in the study.

Good point.  In addition the "mean average of 16 months" cannot be conclusive that 92% of ALL people with Celiac do not heal....many take years to heal, but often times with great success.


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Lisa

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#72 grodeylocks

 
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Posted 15 June 2013 - 04:01 PM

Once again you guys miss the complete point of my argument. The development of celiac drugs/vaccines is a great thing, I'm not sure why you chose to argue with me over something that multiple studies show is pretty true. You have the study and its findings right in front of you, its a lot more reliable then any random opinions from non-scientists on this board. You also completely avoided the whole argument about zonulin and the implications of it being spiked even years after adopting the gluten free diet. There clearly is a need for alternative therapies, there's nothing bad and only a lot to gain. I mean the whole anti-vaccine backlash I saw on this board kind of reminded me of the paranoia surrounding the whole don't vaccinate your kids because it causes autism thing. It's a bunch of unfounded paranoia. Science is


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#73 grodeylocks

 
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Posted 15 June 2013 - 04:02 PM

For those of you interested this is a real good breakdown of why being gluten free simply is not enough. http://scdlifestyle....e-slowly-dying/


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#74 grodeylocks

 
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Posted 15 June 2013 - 04:14 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.

Wow what a gross generalization about many doctors and scientists working together for the ultimate benefit of society. That's not how it works at all.


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#75 BELMO33

 
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Posted 15 June 2013 - 04:25 PM

I anticipate initially this vaccine is going to create problems because people are going to think its the equivalent of lactose intolerants take that completely allows the body to break down lactose and will go completely off their gluten-free diets.  From what I'm reading or understand this is just a 1st step in that it basically prevents cross contamination concerns or maybe if you ate one breadstick or a few croutons you would not have any SI reaction.  I'm of the opinion a "complete cure" or medication that allows gluten to be completely broken down is easily feasible and probably has been for quite some time but since celiac has only recently come to the forefront no efforts were being put forth to get there.  I think if this is ultimately successful that will follow quickly behind.  I most likely have celiac although its hard to say because my GI symptoms can vanish for weeks at a time and I had one marginally positive blood test but I more or less decided 3-4 months back when I got the blood test result I was not going to even bother going gluten-free until some sort of cross contaminant preventer became available.  My only positive test was a 19 on the IgA, I figure in 3-4 years (the most likely time before this thing is out there) I could not do that much additional damage given the ttA and EMA were raging negative. 


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