Celiac Treatment Research

[Mollifier]

Has anyone else heard of the new gluten vaccine being tested??

Read this:

Open Original Shared Link

I've had celiac disease for 5 years now and I cant wait for this vaccine! I've read the above article, and watched the news reports on national tv here in Australia. Things are looking up!!

[Salax]

Interesting. I don't think I would take it though. More chemicals pumped into the body. Likely to get cancer from the vaccine or something. I think natural healing is the best AND since celiac in a sense is cure-able all it's own from diet, why risk a shot?

*getting off my soap box*

Cheers!

[sbj]

Sign me up!

This sounds a bit different than one discussed last week I think:

https://www.celiac.com/gluten-free/index.ph...c=57113&hl=

"Jason is working with Dr Robert P Anderson. His submission focussed on the development of a coeliac vaccine that would target the disease-causing T cells that are reacting to the toxic fragments of gluten, and make them gluten

[Mollifier]

This sounds a bit different than one discussed last week I think:

https://www.celiac.com/gluten-free/index.ph...c=57113&hl=

I think these discussions maybe the same. Here is the website of the company who is orchestrating the research and testing. After reading the articles, it seems that their initial testing have all been very positive.

The research company is Open Original Shared Link.

[brazen20au]

i'm a bit like salax and a bit wary of it in general, however i think it would be BRILLIANT for travelling, especially when travelling overseas

[Mollifier]

I actually cant believe that more people aren't positive about a cure! I cant wait to start eating without restrictions again. Its torture being bound by gluten! Not just for me but also for my darling wife. Surely there must be some of you who feel excited about the prospects for a vaccine?? Please share your thoughts with us...

[rinne]

Sorry, can't add to the excitement, I am not interested in it or its' possible side effects.

I read yesterday that on average, every Canadian spends nearly $900.00 a year on prescription medications. I will not live that way.

I think gluten is a toxin, I think it negatively effects many more people than ever make the celiac connection, I predict that one day people will look at gluten and compare it to tobacco, a poison that society embraced for a period of time.

[RiceGuy]

What concerns me is that the "therapy" is intended to "desensitize" the immune system to gluten. I suspect that this will have numerous unintended side effects. Namely, that the immune system will then be desensitized to various other things, be they molecules or microbes. It would be like giving a person a crippled immune system, where they're vulnerable to all sort of illnesses. Sorta like what AIDS patients deal with.

I do like that they pointed out how gluten in today's foods is unnaturally intensified.

However, one interesting part of that article is the following:

"two years after adopting a gluten free diet, about half those people diagnosed with celiac disease continued to have villous atrophy as severe as when they were first diagnosed. Only about one in five of those with severe intestinal damage (villous atrophy) on a gluten free diet had raised (abnormal) blood levels of transglutaminase antibody, meaning that standard blood tests to monitor disease activity were relatively ineffective."

This really says a lot about current tests, and overall effectiveness of the gluten-free diet.

[dilettantesteph]

I found that very interesting too, especially as it seems to be accepted that if your blood test is negative, your problems are over. It looks like you can easily still have villi damage with a negative blood test.

[Lisa]

"two years after adopting a gluten free diet, about half those people diagnosed with celiac disease continued to have villous atrophy as severe as when they were first diagnosed. Only about one in five of those with severe intestinal damage (villous atrophy) on a gluten free diet had raised (abnormal) blood levels of transglutaminase antibody, meaning that standard blood tests to monitor disease activity were relatively ineffective."

I would like to see the reserach that drew the conclusion to this information. . Considering the gluten free diet is self-directed, it would be almost impossible to draw this conclusion unless it was a controlled study, which would be impossible for a two year research project.

Mollifier, do you have a connection to this vacine, research or e-mail marketing?

[taweavmo3]

While I can see why some would be excited about this......I can't get on board either.

I already feel blessed that this disease has a natural cure, and I'll take that over messing around with my immune system anyday. This diet is a pain at times, and inconvenient yes, but our lives have changed for the better in SO many ways, I wouldn't change a thing.

[Jestgar]

"two years after adopting a gluten free diet, about half those people diagnosed with celiac disease continued to have villous atrophy as severe as when they were first diagnosed. Only about one in five of those with severe intestinal damage (villous atrophy) on a gluten free diet had raised (abnormal) blood levels of transglutaminase antibody, meaning that standard blood tests to monitor disease activity were relatively ineffective."

I would like to see the reserach that drew the conclusion to this information. . Considering the gluten free diet is self-directed, it would be almost impossible to draw this conclusion unless it was a controlled study, which would be impossible for a two year research project.

I agree. This sounds kinda bogus to me.

[RiceGuy]

"two years after adopting a gluten free diet, about half those people diagnosed with celiac disease continued to have villous atrophy as severe as when they were first diagnosed. Only about one in five of those with severe intestinal damage (villous atrophy) on a gluten free diet had raised (abnormal) blood levels of transglutaminase antibody, meaning that standard blood tests to monitor disease activity were relatively ineffective."

I would like to see the reserach that drew the conclusion to this information. . Considering the gluten free diet is self-directed, it would be almost impossible to draw this conclusion unless it was a controlled study, which would be impossible for a two year research project.

Mollifier, do you have a connection to this vacine, research or e-mail marketing?

The first thing I thought of as I read it, was that the people being tested had not been adhering 100% to the diet. I also recalled how the European CODEX (not sure how that effects Australia) defined gluten-free at <200ppm, and the foods were making a lot of people sick.

However, the blood test wouldn't require long-term monitoring. If the transglutaminase antibody was tested at normal levels for the majority of individuals, I think that's the important part. That is, the fact that villous atrophy still occurs while the blood test suggests that they're doing fine. Regardless of how the person's diet is, the blood test is misleading.

[Jestgar]

However, the blood test wouldn't require long-term monitoring. If the transglutaminase antibody was tested at normal levels for the majority of individuals, I think that's the important part. That is, the fact that villous atrophy still occurs while the blood test suggests that they're doing fine. Regardless of how the person's diet is, the blood test is misleading.

I don't quite understand what you're saying. Could you phrase it differently?

[RiceGuy]

I don't quite understand what you're saying. Could you phrase it differently?

I mean, one need not follow a test subject for years in order to take a single blood test, and see the antibodies at normal levels. Since villi damage was found in a considerable number of the subjects with normal antibody levels, it proves that one mustn't rely on blood tests as an indicator of how they're actually doing.

It wouldn't surprise me if low level contamination still causes villi damage, even though the antibody levels may appear normal. The fact that there IS a range considered "normal", means that the antibodies are there, but apparently the medical "experts" consider it to be insignificant. Perhaps in a non-Celiac, the intestines repair themselves fast enough. I don't know. But I think the villi damage in conjunction with normal antibody levels suggests there's more to it than currently recognized.

[Jestgar]

I mean, one need not follow a test subject for years in order to take a single blood test, and see the antibodies at normal levels. Since villi damage was found in a considerable number of the subjects with normal antibody levels, it proves that one mustn't rely on blood tests as an indicator of how they're actually doing.

It wouldn't surprise me if low level contamination still causes villi damage, even though the antibody levels may appear normal. The fact that there IS a range considered "normal", means that the antibodies are there, but apparently the medical "experts" consider it to be insignificant. Perhaps in a non-Celiac, the intestines repair themselves fast enough. I don't know. But I think the villi damage in conjunction with normal antibody levels suggests there's more to it than currently recognized.

Thanks.

I think I remember reading somewhere that villi damage precedes antibody production, so that would follow with what you're saying. Some level of intestinal damage could exist, but not to the degree that leads to antibody production.

However, I also remember reading somewhere that the majority of people with Celiac disease that follow a strict gluten-free diet do not have villi damage after some period of time (which varies depending on the study and the person). So if I'm remembering this correctly, the person's statement is completely incorrect. I looked at the source of the quote, and they cite no studies, just offer these blanket statements, so I'm inclined to think the article is just a marketing ploy.

[RiceGuy]

Thanks.

I think I remember reading somewhere that villi damage precedes antibody production, so that would follow with what you're saying. Some level of intestinal damage could exist, but not to the degree that leads to antibody production.

It has always been my understanding, that the antibodies were what lead to the damage. Perhaps the damage can appear before the level becomes detectable, but unless I see some credible, published studies explaining otherwise, I doubt the damage could come first.

However, I also remember reading somewhere that the majority of people with Celiac disease that follow a strict gluten-free diet do not have villi damage after some period of time (which varies depending on the study and the person). So if I'm remembering this correctly, the person's statement is completely incorrect. I looked at the source of the quote, and they cite no studies, just offer these blanket statements, so I'm inclined to think the article is just a marketing ploy.

I hope you're correct, and it has been my understanding as well. Though given the poor standards defining what can be labeled gluten-free (especially the CODEX up until fairly recently), and mistakes people often and unknowingly make on the diet, I think it's easy to have conflicting studies getting published, even with good intentions. As was stated, a study would basically have to strictly monitor the diet of subjects long-term, to be certain they've not ingested gluten.

But there's still that bit about the antibodies...let's hope that's inaccurate as well.

[Jestgar]

It has always been my understanding, that the antibodies were what lead to the damage. Perhaps the damage can appear before the level becomes detectable, but unless I see some credible, published studies explaining otherwise, I doubt the damage could come first.

Perhaps if I amended my statement to say "antibodies in the blood". I believe Enterolab's conviction is that antibodies in the intestinal system are the very first indicator.

[cyberprof]

Perhaps if I amended my statement to say "antibodies in the blood". I believe Enterolab's conviction is that antibodies in the intestinal system are the very first indicator.

I had negative blood tests but positive for intestinal damage. Others have positive blood tests but negative biopsies.

It's difficult because neither the blood test nor the biopsy are 100% accurate. The blood test is not very sensitive. Biopsies are "hit and miss".

My blood was still negative, so I guess I'd have to have a follow-up endoscopy to see if I have damage still 2 years later...

[chasbari]

Negative blood test, very positive biopsy and rheumatoid arthritis so bad it was immobilizing me. The gluten-free diet in paleo form has set me free in a very short amount of time. I am still losing weight for the time being but I have not felt better in decades. The thought of doing something to modify my immune system for the "convenience" of being able to eat gluten containing food is no more interesting to me that taking Enbrel or Humira (both pushed heavily by my rheumatologist) which I rejected as doing nothing more than masking a symptom and not getting to the root cause.. celiac. Once treating the actual problem all the other problems have been clearing up. I see cause and effect of gluten in so many people but have to bite my tongue (it is gluten free.. so I am safe!) because everyone seems to feel sorry for me that I have lost all this weight and don't look plump and healthy (ie: like them.) Honest, in a parallel universe I could swear that gluten and high fructose corn syrup are just some alien plot to fatten up we humans for some sort of final harvest (cue the eerie sound track for some bizarre B movie to be shown on very late night television.) Anyway, there is no way I would take such a vaccine..even after decades of testing, after all, I am already the exception to something by having this genetic condition that is treatable by.. what's that? Oh, yeah! Eating good food. I hate to bite the hand that feeds the forum but I often wonder, with all the celiacs that keep having to go back to the SCD which, to my understanding, was much more of the standard treatment back in the 50's, that all of the attempts to make it appear like we can eat "normal" foods is actually causing far more problems than it is all worth. I eat Paleo and I am healing. I try to add something like Rice Chex with sugar and BHT and whatever in it and I go down hill. If Rice Chex and even rice without any additives cause me problems I don't desire glutens at all. End of rambling incoherent rant.

[nutralady2001]

The first thing I thought of as I read it, was that the people being tested had not been adhering 100% to the diet. I also recalled how the European CODEX (not sure how that effects Australia) defined gluten-free at <200ppm, and the foods were making a lot of people sick.

Australia has the strictest guidelines in the world I believe. To qualify as gluten free a food must have less than 5 ppm gluten

I'm not excited sorry....................... another vaccine pumped in to the body and it will be years before it comes to fruition. Much easier to stay gluten free

[caek-is-a-lie]

I actually cant believe that more people aren't positive about a cure! I cant wait to start eating without restrictions again. Its torture being bound by gluten! Not just for me but also for my darling wife. Surely there must be some of you who feel excited about the prospects for a vaccine?? Please share your thoughts with us...

I'm sorry, I just can't get excited about the prospects of injecting myself with gluten to make me not sensitive to gluten. If it was any other type of cure I'd be thrilled, but this just seems like certain death, in a way. I'm just too sensitive to gluten...how could injecting it into my body for months and months be a good thing? I spend so much time and energy doing everything I can to avoid gluten. It would be hard to let someone with a syringe full of gluten anywhere near my body, no matter how diluted it is. I'm pretty sure I'd run.

[rinne]

......Honest, in a parallel universe I could swear that gluten and high fructose corn syrup are just some alien plot to fatten up we humans for some sort of final harvest (cue the eerie sound track for some bizarre B movie to be shown on very late night television.) ....

Parallel.

I am sure the pharmaceutical companies are salivating at the idea of yet another product we will purchase to suppress symtoms, symptoms that could be prevented by changing our diets. Look at the profits being made from those diagnosed with arthritis and diabetes.

[RiceGuy]

I'm sorry, I just can't get excited about the prospects of injecting myself with gluten to make me not sensitive to gluten. If it was any other type of cure I'd be thrilled, but this just seems like certain death, in a way. I'm just too sensitive to gluten...how could injecting it into my body for months and months be a good thing? I spend so much time and energy doing everything I can to avoid gluten. It would be hard to let someone with a syringe full of gluten anywhere near my body, no matter how diluted it is. I'm pretty sure I'd run.

Even with all the idiotic things the medical industry comes up with, I was still surprised by that too. That they'd actually attempt to "desensitize" the body. I mean, how could they think that injecting gluten into a gluten intolerant person could work, when so many such individuals have suffered for decades from gluten ingestion? It just doesn't make sense to me.

It reminds me of something I heard recently, about the same sort of nonsense being tried for peanut allergies. Open Original Shared Link. They call it "immunotherapy", and suggest that it may make an allergy "go away". Say what? Isn't this strikingly similar to certain forms of homeopathy (which the medical profession insists is quackery)?

I think the entire notion of "building up a tolerance" is pure rubbish. I would point out, that many on this board have noticed an increased sensitivity to gluten after being gluten-free for a while. However, the damage to the intestine had still been occurring before the change in diet. Only the appearance of outward symptoms were suppressed.

So if it does anything, I'd say such "treatment" may suppress the ability to feel how the body is ailing. This might be the body's way of managing symptoms when it has no other option other than feeling miserable. In the end, what I suspect will happen, is that anyone attempting this for a sustained period of time will develop some major health problems. Then it could take an additional 20 years before they figure out the connection between those problems, and their "treatment".

[Mollifier]

Mollifier, do you have a connection to this vacine, research or e-mail marketing?

I honestly don't have a connection. I was surprised that these topics weren't being discussed, as they have all been aired on national TV here in Australia. I am simply excited to have a possible cure on the horizon.