Celiac Vaccine? Not For Me

[kareng]

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

 

Open Original Shared Link

 

"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.

[Adalaide]

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

 

Open Original Shared Link

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

 

Open Original Shared Link

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”

 

Open Original Shared Link

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.

[IrishHeart]

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"

 

Open Original Shared Link

 

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[Ksee]

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.

[IrishHeart]

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

 

[Ksee]

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.

[kareng]

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.

[IrishHeart]

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.

[Brandiwine]

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*

[grodeylocks]

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.  Open Original Shared Link

[IrishHeart]

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. "

[grodeylocks]

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.

[Adalaide]

"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.

 

Open Original Shared Link

 

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.

[grodeylocks]

Got it from this study. Open Original Shared Link 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 (Open Original Shared Link) 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.

[grodeylocks]

Open Original Shared Link

 

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.

[grodeylocks]

Also, even years after being completely gluten free, as shown in this study by Dr. Fasano (Open Original Shared Link) 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.

[IrishHeart]

"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"

[grodeylocks]

"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.

[IrishHeart]

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.

[Adalaide]

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 s$#& 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.

[Lisa]

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 s$#& 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.

[grodeylocks]

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

[grodeylocks]

For those of you interested this is a real good breakdown of why being gluten free simply is not enough. Open Original Shared Link

[grodeylocks]

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.

[BELMO33]

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.