Barley Enzyme

[AllisonJ_98]

Has anyone been following the Barley Enzyme as a potential help for CD? It piqued my interest as I wondered if it would be something that was "natural" and just added to the diet. I have been reading about Zonulin , but would hesitate to put my 3 kids on it even if the FDA said it was ok. (ummmm...Vioxx anyone?) :eek:

Allison

BETHESDA, MD (June 30, 2006) – A new enzyme originally developed for commercial food processing turns out to also quickly and nearly-completely break down whole gluten molecules as well as the T cell stimulatory peptides that cause celiac disease, a digestive disease with no current effective treatment other than avoiding wheat, barley or rye products.

In addition, the enzyme operates best in just the kind of physiological environment found in the human stomach and works 60 times faster than an earlier promising enzyme, which was not effective in acidic conditions and was inactivated by pepsin, both of which are found in the stomach.

“On the basis of our results, there now is a realistic chance that oral supplementation with an enzyme can ensure gluten degradation in the stomach before reaching the small intestine, where it causes problems for people with celiac disease,” according to Frits Koning, researcher at the Leiden University Medical Center, The Netherlands, who headed the team that has published a new research paper on its work.

The paper, “Highly efficient gluten degradation with a newly identified prolyl endoprotease: implications for celiac disease,” is in the online American Journal of Physiology- Gastrointestinal and Liver Physiology, published by The American Physiological Society. Research was by Dariusz Stepniak, Liesbeth Spaenij-Dekking, Cristina Mitea, Martine Moester, Arnoud de Ru, Renee Baak-Pablo, Peter van Veelen and Frits Koning of Leiden University Medical Center, the Netherlands, and Luppo Edens of DSM Food Specialties, Delft.

[annelb]

Companies are rushing to find "cures" for CD - zonulin inhibitor, enzymes. Sounds good and I would love something I could take when eating away from home. What worries me is what if this stuff becomes available and there is a collapse of the GF market. What happens to those who don't want to try a new drug. What will be the risks of long term use? So many drugs don't get their black box warning or get pulled until years of use and many people are hurt.

I don't want the research to stop. I am only cautious.

I know the GF diet is "safe". :D

Thanks for posting this - always good to stay up with the news.
Anne

[NancyM]

I recently read something that warned you shouldn't take a new drug until it had been on the market for 7 years. Probably good advice.

[AllisonJ_98]

I guess that was my "question".....would this be considered a drug with all of the scary repercussions of side effects?:confused:


Allison

[orthomolecular]

There are enzymes for people with gluten problems. Houston Nutracueticals makes them. These are somewhat expensive and may not work for everyone. But the do seem to be the main ones known for gluten issues. They allow most people to eat gluten without any problems, I think.

This site is Karen DeFelice's website. Her book Enzymes for Autism... also explains about these enzymes.

http://www.enzymestuff.com/basicsproductguidelines.htm

[NancyM]

Boy, I sure wouldn't believe that without a whole lot of peer reviewed proof.

[KimS]

They allow most people to eat gluten without any problems, I think.

With respect ortho. (I'm thinking maybe you are very new to the celiac world... and we've all been there, so this is not criticism of your comment at all... however....) making comments like that without the facts may lead some people to think they can eat gluten safely, when in truth, it is a statement not based on fact. I do realize that you said, "I think" but people who are desperate to avoid a gf diet may hold on to the first part of your sentence and let the rest go.

If they had found a magic pill like that, it would be common knowledge because the marketing would go through the roof and celiacs everywhere would be demanding a large supply of it.

It would also be covered by health insurance.

If it would be a big money maker but is still not being widely used or marketed, then the only reason is because it doesn't really work. One thing we all know is that if pharmaceutical companies can figure out a way to make a buck, then they will.

[orthomolecular]

If they had found a magic pill like that, it would be common knowledge because the marketing would go through the roof and celiacs everywhere would be demanding a large supply of it.



If you know NOTHING about the product I metioned then how can you have any kind of opinion or response? You seem to know nothing about this product, but are so sure it does not work.

Tell me why this product does NOT work. Can you explain that? You seemed to miss that part.

And no I don't care about this argument that IF it worked EVERYONE would know about it. That is never how it works in our system of health care. IF there was a DRUG that worked EVERYONE would know about that DRUG. But not everyone knows about complimentary options.

[jccgf]

Here is what they post about celiac and enzymes. I started to post excerpts, but decided it should be read in its totality...mostly because I don't have time right now to excerpt the appropriate parts...and be sure I have missed something.

But, hopefully, this will clear up a few things~

http://www.enzymestuff.com/conditionceliac.htm

Cara

[KimS]

I seem to have hurt your feelings. So, first things first... I truly apologize! It was not my intent at all.

My intent was only to point out that saying things like the quote below may hurt some newcomers.

They allow most people to eat gluten without any problems, I think.

What I do know about enzymes is that many of the people here research it several times a year and that if something came out over the last several years, we would probably be one of the first places to be posting about it (along with posting the backup research and charts and even just posting links to many, many people who have had it work for them if there weren't any science studies to pull from).

If you have this type of backup information for this enzyme, please do post it as we would all love to read it. If there were any truth to your statement above (and I'm not saying it's not truthful, I'm saying I haven't seen any backup info. for me - or anyone else - to know that it's truthful), I would, quite honestly, probably be the first person to go out and buy it and then feel indebted and grateful to you for all eternity. :)

My apologies, once again. I did not mean to offend you in any way.

[orthomolecular]

I seem to have hurt your feelings. So, first things first... I truly apologize! It was not my intent at all.

My intent was only to point out that saying things like the quote below may hurt some newcomers.



What I do know about enzymes is that many of the people here research it several times a year and that if something came out over the last several years, we would probably be one of the first places to be posting about it (along with posting the backup research and charts and even just posting links to many, many people who have had it work for them if there weren't any science studies to pull from).

If you have this type of backup information for this enzyme, please do post it as we would all love to read it. If there were any truth to your statement above (and I'm not saying it's not truthful, I'm saying I haven't seen any backup info. for me - or anyone else - to know that it's truthful), I would, quite honestly, probably be the first person to go out and buy it and then feel indebted and grateful to you for all eternity. :)

My apologies, once again. I did not mean to offend you in any way.

I think you are off base with comments about my feelings and how "words hurt newcomers." Don't apologize about my feelings. I can deal with my feelings perfectly fine. And my feelings are really not the issue at all. You should take owership of your comments though.

You should not express your opinion and make it seem like you know something about this product. I don't care to argue with someone who has made up their mind already.

MY WORDs will hurt newcomers?? You think you can hold me responsible for someone else's actions because of something I posted???? That is nonsense. You seem to think that some people can't think for themselves, and you feel it is your job to explain things to them. How could you know that some newcomer would be "hurt" by some post of mine? You are speculating about something that MIGHT happen. PLEASE STICK TO THE FACTS and stop worrying about other people's feelings or possible actions.

How is it your place to decide that some post will "hurt" newcomers? Just stick to posting any information you have that disputes facts that you don't agree with. Just because you don't agree with something doesn't make it wrong. You need to show factual information why something is wrong instead of just expressing your opinion as if it were a fact.

You know nothing about this product but only express your belief that it does not work. You KNOW that if it did work everyone would know about it. AGAIN, not a fact, but just your belief. Your beliefs are not relevant or factual.

IT IS ONLY YOUR OPINION that harm will come to someone reading my post. That is pure speculation. People are capable of thinking for themselves without your help and you expressing your beliefs that something can't possibly work.

[jccgf]

I think you are off base with comments about my feelings and how "words hurt newcomers." Don't apologize about my feelings. I can deal with my feelings perfectly fine. And my feelings are really not the issue at all. You should take owership of your comments though.

You should not express your opinion and make it seem like you know something about this product. I don't care to argue with someone who has made up their mind already.

MY WORDs will hurt newcomers?? You think you can hold me responsible for someone else's actions because of something I posted???? That is nonsense. You seem to think that some people can't think for themselves, and you feel it is your job to explain things to them. How could you know that some newcomer would be "hurt" by some post of mine? You are speculating about something that MIGHT happen. PLEASE STICK TO THE FACTS and stop worrying about other people's feelings or possible actions.

How is it your place to decide that some post will "hurt" newcomers? Just stick to posting any information you have that disputes facts that you don't agree with. Just because you don't agree with something doesn't make it wrong. You need to show factual information why something is wrong instead of just expressing your opinion as if it were a fact.

You know nothing about this product but only express your belief that it does not work. You KNOW that if it did work everyone would know about it. AGAIN, not a fact, but just your belief. Your beliefs are not relevant or factual.

IT IS ONLY YOUR OPINION that harm will come to someone reading my post. That is pure speculation. People are capable of thinking for themselves without your help and you expressing your beliefs that something can't possibly work.

Ortho, did you take time to read the link I left (which came from the same site as the link you left)?

It was found, in general, people with celiac reacted worse when taking gluten + Peptizyde than when consuming small amounts of gluten with no enzymes. Celiac is an autoimmune disease/condition with a genetic basis. There are certain sequences of peptides which cause a reaction in the small intestine of individuals with celiac disease. The peptides can be as small as 12 amino acids long (that's pretty small). These peptides are different than the peptides that get absorbed into the bloodstream and cause the opiate problem which are called gliadiomorphs. When the peptides get to the small intestine, the celiac's body registers these peptides as The Enemy. A non-celiac's body would just see the peptide as from gluten and let it pass. Once the celiac’s body detects The Enemy, certain antigens are produced which increase T-cell production in the small intestine villi

There is a certain structure in the gliadin that the small intestine sees as toxic in celiac individuals. The protease enzymes are not breaking this down in a way so that it does not cause a reaction in celiacs. So, in fact, taking just a protease such as Peptizyde may be just making more of these little peptides (or whatever) available to the small intestine, and perhaps increasing the number of chances to provoke a reaction.


This is a different situation from the peptide/opiate problem which is caused by large, insufficiently broken down molecules and leaky gut. Those peptides have a certain structure that attaches to specific receptors in the brain. Celiac reactions are triggered by different tiny peptides which attach to receptors in the small intestine. Only celiacs will have intestines that react in this way.




Researchers are actively working on enzyme preparations that might one day work for those with celiac disease, but this is still in research phases. If you drop to the bottom of the page of the link above, you will see a June 2006 report that shows this is still in research development. Not a done deal. We've been discussing enzymes for years here, and are a very open minded group who stay on top of the latest research. Although, I'm going to admit that it is news to me that the some enzymes could actually make things worse for celiacs. I thought they were just not completely effective, and therefore not very useful for breaking down gluten in those with celiac disease.

Cara

[NancyM]

You should not express your opinion and make it seem like you know something about this product. I don't care to argue with someone who has made up their mind already.
When evaluating drugs or possible cures for celiac, or any disease, it really isn't up to the average person to have to prove whether they work or not. It is up to the manufacturers to prove it. That is as it should be, considering how much harm could be done to someone who thought something was working when it really wasn't.

[JudyLV]

I read DeFelice's book "Enzymes for Autism and other Neurological Conditions" this summer. When I came across what Cara highlighted
It was found, in general, people with celiac reacted worse when taking gluten + Peptizyde than when consuming small amounts of gluten with no enzymes
I was wondering if giving my daughter Peptizyde, when she is finally able to do her gluten challenge, could help speed things along. She agreed that she would stop the challenge if her nausea started up. Maybe we could avoid doing the challenge to the point of damage (which I view as totally archaic) if she started to have a strong reaction to gluten.

Does this make sense to anyone?

--Judy

[KimS]

Hi Judy... just 2 cents from me... not based on anything specific.

I would just do the challenge with gluten because if you do more than one thing at a time, you won't be clear as to which one she reacts to... or if it's just the combination of the two (but individually they might be okay).

[JudyLV]

Thanks Kim. More than once I have been too hasty adding supplements (because they were supposed to be good for me), only to have to back up and stop them and then do them one at a time.

--Judy

[KimS]

Me too! :D That's how come I know... it's not 'cause I'm smart or anything... it's because I keep making that mistake myself. :D