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I found this article and I think it explains exactly what I've been trying to say in my posts. It seems that there has definately been some confusion....and I think it comes mainly from the fact that the enzymes are used by both Celiacs....and non Celiacs. They are used for the same purpose in both conditions...which would obviously be to improve digestion...however, there is an *understanding* that Celiacs do not have a free pass to consume gluten just because these enzymes are available.

The enzymes can be beneficial for *everyone*....Celiac's included. No, they are not to be used by a Celiac in place of the diet....but yes....they can improve digestive function...including helping the body to process the gluten more efficiently. Noone knows if traces of gluten from *every* incident of cc are causing villi damage...I think this would vary with each individual.....because we dont all have the same immune system...and we dont all react at the same level. For example...some Celiacs eat oats without any problems...others cannot handle oats at all.

Some people react to tiny traces of gluten...other people dont seem to have this problem. Is damage occuring in every instance regardless?? We dont really know...because each person is different. Some people state that they are extremely sensitive to minute traces of gluten....other people state that they are not all that sensitive and are rarely "glutened". Is the exact same immune response occuring in every instance of exposure...do all Celiac's react to the same level of cc?? My opinion is that each person is different.

In addition to each person having their very own immune system....they will have many *other* differences as well. Some Celiac's will have problems with leaky gut...others will not. Some Celiac's will have bacteria/yeast overgrowth....others will not. Some Celiac's will continue to have enzyme deficiencies...others will not. I could go on and on....but the point is that everyone is different.

I would have to assume that a Celiac who has additional digestive issues is going to benefit from the enzymes more noticeably than a Celiac who has no other complicating factors. Therfore I do believe that they can be just as useful for a Celiac...as they can for a non-celiac. But I'm stating AGAIN...that this does not mean the Celiac can consume gluten without consequence. The diet is life-long....and as of now...we dont know of any other form of treatment for Celiac Disease.

I dont think that anyone can say with 100% certainty that the enzymes cannot prevent tiny amounts of gluten from causing problems. Nor can we say with 100% certainty that the enzymes CAN prevent damage from occuring. We dont have those answers....and I believe that it would vary greatly with each individual. This is why they cannot be used as a "treatment" for Celiac...they are not meant to be a "cure" for ANY disease.

I think its possible that UncleZack (if he's for real :P ) and others who report reduction in symptoms as well as improvement in other areas...may actually be feeling better because the offending proteins (not just gluten) are being broken down....so less inflammation and more healing. Maybe its because its helping with other gut issues.

Even if its not helping with cc at all....maybe since the "rest" of the gut is functioning better...the reaction is less severe. I *still* think that is a very positive thing. Some people might believe that its better to feel sick...and its better to be completely run down for a few days (or even a few weeks) as a result of a glutening. However, I kind of think that the body and the immune system would not agree. I dont think its good for the immune system to be run down...and I still think if people *feel* better....then it means that their body is doing better overall.

Symptoms are actually the body's way of telling us that it is not doing well. In my opinion those Celiac's who are asymptomatic despite absolute villi damage...are symptom free only because their body/immune system hasnt yet reached the point where it cannot *handle* what is going on.

Eventually the scales will tip...and that person will become sick...and they will have symptoms as a result...only because the body/immune system is under such stress that it can no longer keep you from feeling sick. Then that person begins searching for answers...and going through the process of testing for everything under the sun...until the Celiac is found.

Some people will get sick BEFORE that much damage is found...because their body/immune system is saying that its had enough. Again, each person is very different. I think when symptoms are occuring its never a good thing for the body/immune system...but thats just my opinion.

Well...I said alot more than I intended (which is nothing new)... but here is the article for anyone interested. Hopefully it answers some of the questions people have had....or at least explains things better than I was able to do.

I dont know about anyone else.....but I think if something is improving the quality of my life....it cant be all that bad....and it definately cant be considered "snakeoil"....at least not in my eyes. :)

Frankly, I'm not even sure how something that is produced by the body (such as enzymes) and is essential for good health...can be considered "snakeoil" at all. :huh:

Rachel,

You are awesome! You (as I understand from your profile) don't have a problem with gluten, but have taken the time to research enzyme therapy for Celiac Disease/Gluten Intolerance. All of your posts have already backed up what I have been arguing about with a few of the other members. As far as I am concerned, you have explained yourself very well. I was happy to read all of the pro enzyme posts yesterday from you and others.

This article is good, but there will still be those who won't believe in or try enzymes, but a day will come when they will be eating their words along with their daily dose of enzymes.

Why is it that people will believe that an enzyme based kitchen cleaner eats the grease and grime but when it comes to an enzyme eating gluten, it is only masking it?

When I made my first post here earlier this week, there were very few people admitting that they use enzymes. Now, I think we are at about 50/50 ratio. If I were working for an enzyme company, my work would be done and I would be gone. I'm still here! BTW I got a PM today from Peter the moderator and he said he had read all of my posts and said "......some of the posts have been made by users who's intentions are suspicious. You are not in that category, as I see things."

Here's a true story relating to people who don't or won't believe in the usefulness of enzymes. I have a friend who nearly died from Celiac Disease 15 years ago. He had to have major surgery on his intestines. His doctor put him on the steroid Prednisone to heal his intestines. He is still taking it 15 years later. It is ruining his body. He has had two rotator cuff surgeries on one shoulder and one on the other. He has also come down with a rare form of leukemia. He gets glutened all of the time because he won't do his research or listen to advice. He has tried to quit the Prednisone, but his stomach starts bothering him when he does. Why? Because the Prednisone is healing the damage the gluten he is still eating is causing. When I talk to him about safe eating habits, he just laughs. (He eats french fries in restaurants and wonders why he gets sick!) I tried to tell him about enzymes a few times and he nearly rolled on the floor laughing. Go figure????

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First off I take enzymes. I want to make that clear so folks don't think I am anti-enzyme in general. I also have gotten great relief from them. GI wise.

However, it is important that folks remember that for many celiac is not just a GI problem. It is also important to remember that gluten crosses the mucosal barriers. That means that the gluten antibody reaction begins in the mouth. As soon as the gluten crosses the mucosal barrier it is starting the antibody effect in the bloodstream. Enzymes may be able to stop the GI effects but that is not an assuance that the offending antibodies are not going to already be acting on the brain and other affected organs. Glutenese may be quite helpful in preventing and healing the gut but IMHO those of us with severe autoimmune impact before diagnosis are playing with fire if we use these to reduce CC risk on a REGULAR basis. Anything that will help for the occasional CC incident is one thing but to use it on a daily basis so you can avoid, or think your avoiding, CC at a freinds home or restaurants IMHO very risky. Just my 2 cents for what it is worth. :)

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However, it is important that folks remember that for many celiac is not just a GI problem. It is also important to remember that gluten crosses the mucosal barriers. That means that the gluten antibody reaction begins in the mouth. As soon as the gluten crosses the mucosal barrier it is starting the antibody effect in the bloodstream.

What??

I'm sorry but unless you're talking about a gluten "allergy" the problem with gluten for Celiacs as well as non celiacs occurs in the small intestine. This part is very well understood.

People can have other kinds of reactions to wheat (or any other food/ingredient) but that is not what we're discussing here. Can you provide some info. that shows us that the antibodies in those who have Celiac Disease occur in the mouth??

For people with leaky gut (which can include Celiac's) undigested proteins gain access to the bloodstream via the leaky gut and this can affect any area of the body. However, as far as I know gluten peptides do not enter the system in the mouth....they only have access through a damaged intestinal lining.

I know that there are a great deal of people here who have a very good understanding of Celiac Disease and I would appreciate some imput on this. Please claify as I do not wish to cause furthur confusion.

In all of my research I have never read/heard anything like this. My understanding is that for Celiac's the immune system's attack occurs as a result of an abnormal response to gluten peptides in the small intestine.

Check out this Pub/Med article:

http://www.ncbi.nlm.nih.gov/sites/entrez?d...t_uids=18425213

Department of Biochemistry at Stanford University, Stanford, California, United States of America.

Pathogens are exogenous agents capable of causing disease in susceptible organisms. In celiac sprue, a disease triggered by partially hydrolyzed gluten peptides in the small intestine, the offending immunotoxins cannot replicate, but otherwise have many hallmarks of classical pathogens.

First, dietary gluten and its peptide metabolites are ubiquitous components of the modern diet, yet only a small, genetically susceptible fraction of the human population contracts celiac sprue.

Second, immunotoxic gluten peptides have certain unusual structural features that allow them to survive the harsh proteolytic conditions of the gastrointestinal tract and thereby interact extensively with the mucosal lining of the small intestine.

Third, they invade across epithelial barriers intact to access the underlying gut-associated lymphoid tissue.

Fourth, they possess recognition sequences for selective modification by an endogenous enzyme, transglutaminase 2, allowing for in situ activation to a more immunotoxic form via host subversion.

Fifth, they precipitate a T cell-mediated immune reaction comprising both innate and adaptive responses that causes chronic inflammation of the small intestine.

Sixth, complete elimination of immunotoxic gluten peptides from the celiac diet results in remission, whereas reintroduction of gluten in the diet causes relapse.

Therefore, in analogy with antibiotics, orally administered proteases that reduce the host's exposure to the immunotoxin by accelerating gluten peptide destruction have considerable therapeutic potential.

Last but not least, notwithstanding the power of in vitro methods to reconstitute the essence of the immune response to gluten in a celiac patient, animal models for the disease, while elusive, are likely to yield fundamentally new systems-level insights.

In this statement "Therefore, in analogy with antibiotics, orally administered proteases that reduce the host's exposure to the immunotoxin by accelerating gluten peptide destruction have considerable therapeutic potential."...I believe they are saying that enzymes speed up the breakdown of the problematic peptides and are therefore therapuetic.

By the way....the enzymes I take for the breakdown of gluten and casein peptides contain mostly proteases. It contains high amounts of proteases and high amounts of DPPIV. It has only one purpose...which is to breakdown the proteins. The only thing known to be able to break down casein completely is DPPIV.

The carbohydrate part of gluten can also be a problem....and there are enzymes for that as well.

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Rachel,

Correct me if I'm wrong, but it's my understanding that the gluten autoimmune reaction can take part in other parts of the body. This is not common, but it can happen. Specifically, in my friend "tiredofdoctors", Lynne. Lynne, does not have Celiac, but does have a gluten autoimmune response which manifests in her brain and caused damage. I believe it is not referred to as Celiac Disease, but Raven may know otherwise.

I understand that enzymes can be beneficial to many people and you have spent a great deal of time doing wonderful research that you are willing to share. But, back to the topic of this thread, my concern is the marketing statements by the manufactures of Glutenease that is highly misleading (at the least) and causes me concern, as "elonwy" had previously mentioned. This is the basis of my involvement in this thread.

There is a little life in my horse to get me to work today. ;)

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That is what snake oil is, an untested product being sold on the premise that it cures ailments you can't prove it cures.

I would not say that enzymes are untested. In fact there has been a great deal of research in the area of enzymes. This reasearch has been goinmg on for decades now.

Nobody is mentioning "cure" here.....I think that has been pointed out several times already.

Can you prove that enzymes are NOT beneficial?? Can you prove that they are snakeoil?? If they are not useful then I guess you'd be perfectly fine without any of these enzymes being produced in your body?? I guess you feel they serve no purpose??

If you were deficient in a vitamin...would a supplement containing the vitamin that your body requires be considered "snakeoil"?

Supplementing enzymes only provides the body with what it may be lacking for proper digestion. I dont know where you get the impression that there is no use for enzymes in the body. I think MOST people would benefit from enzymes these days....since the western diet isnt exactly doing our bodies any good.

Our own enzymes can become damaged or deficient. If the intestinal lining is damaged we may not be able to produce enough enzymes. Enzymes can also be damaged by heavy metals or other toxins in the body (DPPIV is known to be damaged by mercury). Some enzymes require certain minerals in order to function properly....if there is a deficiency of that mineral the enzyme may become inactive.

We have thousands of enzymes in our body. The ones in our digestive system have been well researched and we now have the ability to supplement them...just as you would supplement for a mineral or vitamin deficiency.

And you have a problem with this?? :huh:

Before you start saying that enzymes are untested.....please do some research on the subject.

The offending gluten protein is a chain of 32 peptides that the vast majority of people who consume it DO NOT succeed in breaking down. That includes Celiacs, non Celiacs and everyone in between. Breaking it down or not breaking it down has nothing to do with the damage it causes to Celiacs. The damage is caused by the auto-immune reaction that takes place in someone's intestines and throughout their body.

Yes....I agree...the autoimmune reaction takes place in the intestines....and if gluten is able to pass through the intestinal lining reactions can occur elsewhere. The enzymes which I take actually remain in the stomach...so they work on breaking down the gluten peptides BEFORE they make their way into the small intestine. The enzymes would not be effective if they did their work in the samll intestine....because at that point it would be too late.

So the undigested peptides cause inflammation for a non-celiac....and these same peptides trigger an immune response for a person with Celiac. So if these peptides are properly broken down PRIOR to making their way into the small intestine...we can see how this would benefit a non-celiac in many ways.

People with Celiac claim that it helps them to deal with cc....and that they experience less problems eating out while taking enzymes. Can you prove that its NOT because these peptides are fully broken down BEFORE they get into the samll intestine??

At best, at very best this product MIGHT mask symptoms.

Like I said....do some research on the subject and then let me know how its possible that enzymes can mask symptoms. It just doesnt even seem logical to me. If anyone can explain how enzymes have the ability to "cover-up" symptoms I'd be very interested to know how they are able to do that.

Remember, these are the same enzymes that we use naturally as part of the digestive process.

So does this mean that those people who are having no problems whatsoever with digestion...and who have a system which works very well on its own....are truelly having problems that their own body is "masking" with its normal production of enzymes?? :huh:

Please help me to understand what you're saying when you state that enzymes are masking symptoms.

But your assumptions about the benefits of breaking down gluten is faulty to begin with. Break it down, don't break it down, the immune reaction occurs either way.

The assumptions about the benefits of breaking down gluten is faulty?? I think we all know for sure that breaking it down is better than NOT breaking it down.

Even if the immune system is still reacting in the same way....it is still much better to NOT have undigested gluten peptides in the small intestine. Its still better to not be having these large undigested proteins passing through a leaky gut. In my opinion it can be the difference between a short period of mild symptoms...and several days of complete misery. It can be the difference between a small stress to the immune system....and a big stress stress to the immune system which lasts for a much longer period of time.

Honestly, which reaction would you prefer?? Which reaction do you feel is better for the body to endure??

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Correct me if I'm wrong, but it's my understanding that the gluten autoimmune reaction can take part in other parts of the body. This is not common, but it can happen. Specifically, in my friend "tiredofdoctors", Lynne. Lynne, does not have Celiac, but does have a gluten autoimmune response which manifests in her brain and caused damage. I believe it is not referred to as Celiac Disease, but Raven may know otherwise.

Yes...and I have most definately acknowledged this type of non-celiac occurance. In fact, this is what I have studied the most....considering that I myself, do not have Celiac Disease.

I agree 100% that gluten causes damage OUTSIDE of the gut and this is very often totally unrelated to Celiac Disease. I have made this statement numerous times on this board....and most often people are very defensive about the possibility of this happening without any link to Celiac Disease (which as we know is a genetic condition).

I will use Autism as an example....because truelly...underneath all of the "labels"....Lynne's situation is really not all that different. My Dr.'s work with both age groups.....those who are on the spectrum (autism) and those who are dealing with the same types of issues that Lynne is dealing with. Underneath it all...the conditions are very much alike....and the "triggers" for these problems are also very much alike.

However, with ALL of these patients (young or old) gluten is NOT the primary issue. Gluten BECOMES a serious problem because of damage to the gut which occurs for other reasons. This is why these people (and this is very appararant within the autistic population) do MUCH better on a diet which eliminates the most problematic proteins (gluten and casein).

Because they are able to pass through the gut (leaky gut) as undigested peptides....they can cause serious damage to ANY area of the body....including the brain.

I believe in adults the neurological problems are referred to as gluten ataxia.

I VERY much acknowledge what you just posted regarding Lynne's condition. In fact its the same thing that I am MOST often posting about during my time on this board.

However, the point that alot of people are missing is that in these situations where gluten is causing damage OUTSIDE of the gut....this has to result from increased intestinal permeability. If the gut is not leaky...gluten does not have access into the bloodstream.....the only evidence for gluten getting into the system is via the damaged gut.

So if these pople do not ever look into WHY the gut is damaged....and what situation has ALLOWED for the gluten to pass through the gut....the problems do not resolve 100%.

Its the same with Autism...the g.f./cf diet is essential...either the diet needs to be followed or enzymes are taken so that these undigested peptides do not make it into the bloodstream (they are broken down in the stomach...BEFORE making it into the small intestine). Whichever works best for the family and for the child....BUT...this does not "cure" the austism.

This does not resolve all of the issues which can still have an impact on the brain, the digestive system, the immune system ,etc. This does not usually solve the leaky gut problem.....and it is ESSENTIAL for the gut to heal in order for a person to not have ongoing problems. The digestive tract represents a large portion of immunity.....if the digestive tract is not functioning optimally....one can not expect to be in good health.

That being said....Autism is treatable....and many of these children are able to overcome their problems....but *only* when all of the underlying issues are identified and treated and the body is able to function normally. It is no different for people like Lynne....or myself....who do not have Celiac.

In my research and in my time spent talking with other patients as well as the doctors...it is very clear that when testing these kids for underlying issues...and when testing chronically ill adults who have neurological disorders and/or GI dysfunction....those underlying issues are very similar in both cases. They are also treatable in both cases.

However, in these cases of non celiac gluten intolerance.....when ALL of the attention is directed toward gluten....as if it were the same condition as Celiac Disease... the BIGGER picture is missed. Unfortunately, for those people a full recovery is not likely....because even with gluten out of the way....they still continue to suffer damage....and they are never able to truelly heal. Its not that the body is UNABLE to heal...its just that the problems that were there all along....are STILL there...and they are still unresolved.

I think enzymes are ESPECIALLY beneficial for the people who are in this type of situation. Many non celiacs choose to remain on the g.f./cf diet....and they STILL experience a great deal of improvement by supplementing the enzymes. This is most likely because their gut is not functioning very well on its own....and they most likely have damage to the intestinal lining.

When we are not fully capable of breaking down the food we eat....it leads to inflammation as well as dysbiosis....which is not a good thing for the intestinal lining....and it can lead to many disturbances/abnormal reactions throughout the body.

I have not forgotten about Lynne...I still think of her and hope that she is doing OK...and that she is living somewhere that is safe for her. In my heart of hearts....I have always felt that if people looked beyond the gluten in her case...she might have had a chance for significant improvement. There are people who are not unlike her that DO improve. There are autistic children who have such impaired brain function that they cannot even speak...and yet some of these kids overcome ALL of it with proper treatment.

With gluten intolerance....once the gluten is gone...it should not be continuing to damage the body for years to come.

Correct me if I'm wrong, but it's my understanding that the gluten autoimmune reaction can take part in other parts of the body. This is not common, but it can happen.

I also wanted to point out with regards to this statement...that it is VERY common to have problems as a result of undigested gluten passing through the gut. However, I do not feel that in every case there are autoimmune reactions occuring...I think this would largely depend on various factors....including genetics. We are all very different in our body's ability to handle things such as this.

For some people (particularly autistic children) the problems occur as a result of these opiate-like peptides attaching themselves to opiate receptors in the body.....producing a morphine like effect....which can be very damaging to the child's development.

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What medical journal was this published in? Who conducted it?

...and above all else, why was there no control and no placebo?

There is alot of research into enzymes....start reading.

Studies published in April last year in the Journal of Agriculture and Food Chemistry prove that peptidases as an additional line of defence are particularly effective in the enzymatic hydrolysis (breakdown) of casein, soy and gluten proteins and act synergistically to achieve an effect unobtainable with individual enzymes.

I would recommend that you do your own research on the topic of enzymes.

I am not here to try to convince you (someone who clearly despises any type of "natural" treatments) of anything. I say...do your own research and let us know what you find. :)

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Woolygimp,

The enzmyes I take were fomulated by a doctor who had done alot of work in this area of enzymes and receptors.

His research was funded...including several grants from the NIH.

He was *asked* to try to develop enzymes specifically to address the problem of gluten and casein peptides in children with ASD's.

He developed these new formulas based on his knowledge and experience with enzymes over a 20 year period. He is the CEO of the company which produces these enzymes.

Are you going to tell me that he is out to SCAM people with his enzymes?? Are you going to tell me that even though a very high percentage of parents who are using these enzymes for their ASD kids report significant improvement...he is only out to DECIEVE all of us? Is it all really a big marketing SCAM??

Why would this man recieve grants from the NIH if he were a not actually doing something productive??

Dr. Houston obtained a B.A. degree in Biology from Hendrix College in 1979. He then was awarded a B.S. degree in Medical Science in 1980 and a Ph.D. in Biochemistry from the University of South Alabama College of Medicine in 1987. Dr. Houston's graduate work focused on how the aging process affected certain enzyme systems.

Following the defense of his thesis work, Dr. Houston accepted a post-doctoral position at the University of Virginia where he became involved in several fields of research, including ligand-receptor interactions of the adenosine receptor, diabetes, and mechanisms of how cells respond to environmental signals. Dr. Houston's work was funded by the American Heart Association.

In 1990, Dr. Houston accepted a position at Saint Louis University School of Medicine. While there, he obtained the position as Assistant Professor in the Department of Pharmacology and Physiology. His research focus was on characterizing the cannabinoid (marihuana) receptor as a possible model for Alzheimer's research. Dr. Houston's work was funded by several grants from the National Institutes of Health. He published several peer-reviewed papers, as well as presenting his finding at several symposia.

In 1997, Dr. Houston left academia for industry, and accepted a position as Manager of Research and Development at National Enzyme Company. While there, he upgraded the existing lab and instituted more advanced methods of analysis. Instrumental in new product development, he is the formulator and inventor of SerenAid, an enzyme product currently distributed by Klaire Laboratories.

In March of 2000, Dr. Houston left National Enzyme and became a scientific consultant to the dietary supplement industry prior to founding Houston Nutraceuticals, Inc

The study I posted was based on changes which occurred in autistic children who were placed on these enzymes for a period of time.

I would also like to highlight this part of the quote:

Dr. Houston's work was funded by several grants from the National Institutes of Health. He published several peer-reviewed papers, as well as presenting his finding at several symposia.

This is more than we can say about Dr. Fine's work.....and yet people here will support his work 100%. :huh:

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What medical journal was this published in? Who conducted it?

...and above all else, why was there no control and no placebo?

There is alot of research into enzymes....start reading.

Rachel, a lot of the info you've posted is very interesting- both what's related to Celiac and Autism, etc. I appreciate that we're all going more in depth with this. While it was obvious from the start that the companies producing these enzymes don't recommend them for Celiacs, it's better yet to have these discussions about whether there's anything actually to them, and for who.

I also believe that Woolygimp's questions are perfectly valid. Controls and double-blind methods were developed for a reason. They produce more accurate results. For me personally, that doesn't have anything to do with a treatment (or whatever) being alternative or mainstream. I truly don't have anything against alternative treatments as a whole. :)

Howevah...

I think it's very important to ask these questions of ANY study you're interested in... Who conducted it? How was it conducted? (I'm somewhat less impressed by whether a study has been published for peer review, as that is fraught with its own complications...)

Sigh... it does get complicated. <_< There are doctors out there, well-known, respected doctors, who've taken part in studies I'm convinced are flawed. I know this is a little off-topic, but as an example:

Studies show that blood testing for Celiac is 90-something percent accurate, depending on what article you're reading. But they're proving it by biopsy, which is still assumed to be the "gold standard" of diagnosis. But there are MANY people (including myself) who believe that biopsy is a faulty, inefficient, inaccurate way to diagnose to begin with.

So in my opinion, they're using a faulty assumption to prove blood tests' accuracy... thereby throwing the whole study off.

And these are studies done by major researchers, published, and accepted.

This isn't to say I distrust all the studies I read about, or all the studies you link to, or all the studies that aren't done by such-and-such people. I'm just saying these are crucial questions that have to be asked, if you're researching studies in order to form an opinion. KWIM?

Also... to that end... it's my opinion that it would be helpful, and make sense, to post a link back to the original website when you post quotes from studies and articles. Sometimes people don't do that (this isn't an attack or accusation of anyone) and when that's the case, I'm likely to complete dismiss the quote, as it could've come from anywhere.

There's my rambling for the day...

Edited to add: I see in your last post that you actually addressed a little of what I said, while I was composing my post. :P I'm going to leave it up as-is anyway, though.

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Rachel,

You are awesome! You (as I understand from your profile) don't have a problem with gluten, but have taken the time to research enzyme therapy for Celiac Disease/Gluten Intolerance. All of your posts have already backed up what I have been arguing about with a few of the other members. As far as I am concerned, you have explained yourself very well. I was happy to read all of the pro enzyme posts yesterday from you and others.

Thanks UncleZack :)

I also am happy to read from the experiences of others. The vast majority do seem to report positive experiences....which in my opinion is a very good indication that enzymes are beneficial.

Also, being completely natural....they are not at all harmful to the body (with the exception of rare allergic reactions). You cannot "overdose" on enzymes...if they are not utilized within a timeframe...they are of no use....however, they are not harmful in any way. This is more than I can say about prescription drugs which have many side-effects.

I actually do have a problem with gluten...and I was gluten free for 3 years prior to taking the enzymes. I do not have Celiac Disease....so for me the intestinal damage did not begin with gluten...nor did it resolve with the removal of gluten. I have many other food intolerances/leaky gut/dysbiosis, etc.

I'm a non celiac and I'm currently working on the other issues with the help of my doctors.

I did have an interest in the enzymes for my own purposes...so that was my primary reason for doing the research... and I also discussed it with my Dr. I did learn alot about the benefits for those who have Celiac in the process of learning about the enzymes.

I'm happy that you'll be sticking around and I'm sorry that you were greeted with such skepticism. :(

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i just wanted to say this thread is very fascinating.

I have ordered the enzymes that rachel is talking about. I have not started to take them yet. I am still researching and debating on when to start.

I for one decided to order them to help more so with casein and soy. I also would love to take them before i go eat someplace else were the risk of cc is high. For the last 18 months i have been afraid to eat anyplace else besides my house and it is getting old. I hate turning down invitations. If this can help me go places and eat safely, then to me that is good enough.

I will probably never eat gluten cause im afraid to. I am still not 100 percent sure if i am celiac or gluten intolerant due to toxicity and other issues. Trying gluten just is not an option for me, right now.

I will post how things go when i start to take the enzymes.

paula

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Rachel, a lot of the info you've posted is very interesting- both what's related to Celiac and Autism, etc. I appreciate that we're all going more in depth with this. While it was obvious from the start that the companies producing these enzymes don't recommend them for Celiacs, it's better yet to have these discussions about whether there's anything actually to them, and for who.

I agree...which is why I'm still posting on this topic. :)

I think dicussions are very important...and its how we can learn about something which we previously may have had no knowledge of. I myself have learned alot through ongoing discussions....particularly in the OMG thread...which is basically a very long discussion.

Some people are "put off" by discussions....but I think its important to see all sides. Its not about trying to change a person's view....its more about making the information available so that we can all make better informed decisions. People can do their own research....the same way that I did...and come to their own conclusions.

However, when there are attacks and hostility (not directing this at you) with nothing to support this negative response (other than a distrust of anything alternative)....I dont think anyone really benefits. I prefer to discuss things logically rather then to defend myself while under attack (although I was not the target for attacks in this particlular thread).

So yes...discussions are good...and healthy...and I am all for it. :)

I also believe that Woolygimp's questions are perfectly valid. Controls and double-blind methods were developed for a reason. They produce more accurate results. For me personally, that doesn't have anything to do with a treatment (or whatever) being alternative or mainstream. I truly don't have anything against alternative treatments as a whole. :)

Honestly, my own research did not involve looking into studies involving controls and double blind methods....mainly because that was not what I was looking for. I wanted to understand how enzymes work...what types of problems prevent them from working...what types of improvements can be seen as a result of replacing enzymes...what do the doctors have to say about it...what is the success rate with enzyme useage, etc. Those were the questions I had....and regarding these issues most of the recent work/studies have been with regards to autism. So I'm able to learn alot from that area of research.

Overall, the results are overwhelmingly positive. That actually means more to me than the results of any scientific study. I think that I learned enough about enzymes to understand their purpose in the body....if the results werent overwhelmingly positive I would have looked the other way. My interest was based on the fact that so many people are benefiting....and I wanted to understand more about it...it peaked my interest and I wanted to know if it could help me.

I also think that Woolygimp's question is a valid one. However, since that is not where I was looking in my research...I do not have that info. available to me. I know that there have been alot of studies with enzymes...however, I do not know whether they involve control's and placebos.

If thats the info. he's interested in...I think he should look for it. When I'm interested in something.....I go looking for it.....thats how I learn. Sometimes when a person makes this type of request...I DO go looking for the studies...and I do provide the links. However, this takes time and to be honest I do not have the desire to do that when the person clearly has no real interest in the topic...other then to bash all things alternative.

Thats why I suggest he do his own research. Maybe he can learn something and maybe he can then share that with us....having aquired some actual knowledge on the subject. I'm here sharing what I've learned....and he is welcome to do the same.

I think it's very important to ask these questions of ANY study you're interested in... Who conducted it? How was it conducted? (I'm somewhat less impressed by whether a study has been published for peer review, as that is fraught with its own complications...)

Sigh... it does get complicated. <_< There are doctors out there, well-known, respected doctors, who've taken part in studies I'm convinced are flawed.And these are studies done by major researchers, published, and accepted.

This isn't to say I distrust all the studies I read about, or all the studies you link to, or all the studies that aren't done by such-and-such people. I'm just saying these are crucial questions that have to be asked, if you're researching studies in order to form an opinion. KWIM?

There is actually info. (I have it somewhere) about the study I posted....and I also provided a link with my quote. However, the info. with regards to how the study was conducted is not what woolygimp is requesting...he is wanting studies involving controls and placebos...and that is not how this particular study was conducted.

Personally, I am interested in studies as well as personal experiences. For me if something helps the vast majority...then I'm less interested in studies. If something is presented as being helpful...and yet the results are not overwhelmingly positive...then I'm more interested in the studies and will question the validity of the claims. That just me though...I'm personally more interested in results.

For example.....Enterolab...I do question some of Dr. Fine's claims....and at the point that I started having these questions/concerns regarding Enterolab...I also became more interested in seeing him publish his findings for peer review. Of course this has not happened.....and since I have not seen an overwhelming response indicating that Enterolab's testing method is diagnosing the source of health problems...then I am not too excited about it.

It did not solve my health problems....removing gluten alone did not resolve my malabsorption issues....and my health was not restored. I see this as a food intolerance test only....nothing else....it is not diagnositic (nor does it claim to be) and a positive test result does not tell us WHY we are having problems with gluten.

It cannot tell us whether or not we have Celiac, dysbiosis, enzyme dysfunction, leaky gut, etc. In my opinion its an expensive food intolerance test.

If you read Enterolab's website....it gives you the impression that if you take this test and determine that you are indeed gluten sensitive ( by the way...this can be determined very easily with elimination diet)....then by removing gluten you are preventing Celiac from occuring.....and you are preventing all kinds of additional health problems.

It DOES lead people to believe that this diet is a "cure" and that it "prevents" Celiac from occuring....in *everyone*....regardless of whether or not they carry the 2 main genes.

To me this is far more misleading then anything I've seen regarding enzymes. Mainly because people reading Enterolab's site are *led* to believe that they WILL develop Celiac Disease if they continue to eat gluten. This is not even a realistic possibility since we are talking about a genetic disease.

Also, they do not mention anywhere on their site that gluten intolerance can be a consequnce of other conditions in the gut....totally unrelated to gluten/Celiac.

Of course if a non celiac is reacting to gluten.....and they are not going to address the underlying cause for that...then YES....the only option is to remove gluten. Do we really need to pay a couple hundred dollars for Enterolab to tell us this?? :unsure:

If a parent wished to test their ASD child through enterolab...all they are going to find out is that the child is sensitive to gluten....most likely something that they are already aware of. Is this really going to tell them why their autistic child is reacting negatively to gluten peptides?? Is their child's issue's going to resolve 100% because the parent removes gluten while under the impression that this is the *cause* for the autism?? In most cases....no...this is only addressing the problem of undigested gluten entering the bloodstream and having access to opiate receptors in the child's body. The leaky gut issues most likely will not resolve until other issues are identified and treated.

In many cases enterolab is simply "diagnosing" food intolerances which are a result (and not a cause) of leaky gut.

And yet.....there is all kinds of praise for Enterolab.....even without overwhelming improvement in the majority of people and even without anything published for peer review.

The enzymes have both backing them up....overwhelming improvement AND studies/articles which have been published for peer review. ....and yet people here will jump all over it. I'm completely baffled by it to be honest.

Also... to that end... it's my opinion that it would be helpful, and make sense, to post a link back to the original website when you post quotes from studies and articles. Sometimes people don't do that (this isn't an attack or accusation of anyone) and when that's the case, I'm likely to complete dismiss the quote, as it could've come from anywhere.

I apologize for that. You are not the first person to point that out :P and I've tried to remember to include links...but sometimes I forget. If that happens just request the link and I'll provide it. If its something I've quoted...then I will definately have that link available. :)

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I think people in this thread have a very basic misunderstanding of enzymes and their role in the digestion of gluten. Some of the science in this thread is downright wrong and misleading and I'll attempt to clear up what I can.

Saliva is a powerful substance that begins breaking down food and preparing it for digestion by using amalyse and salivary lipase. These are enzymes, and yes Glutenease supposedly contains Amalyse. This I do not argue.

Gluten is a compound consisting of the glycoproteins gliadin and glutenin. Gluten itself is not the problem, but when it's digested it's broken down into polypeptide fractions by peptidases (enzymes). This allows the peptides to cross the cell membrane as amino acids which then causes the damage. These digestive enzymes are crucial in the process of turning gluten into the actual offending proteins that are so harmful to our health. Without enzymes there would be no reaction between the gluten and our intestinal walls but that would also mean that no digestive processes would occur and we would die of starvation.

Saying that enzymes help 'break' apart gluten before it reaches your digestive system is laughable and completely misleading information. It's unlikely that adding more enzymes would be harmful as our body produces enough to cope with the digestive tasks at hand, but it surely doesn't help. The 'breaking apart' of gluten is crucial for the reaction to take place.

Also the gluten molecule can not be rendered inert on any macro level by any mechanical or chemical reactions such as being burnt.

Rachel, you yourself said you were not Celiac. I ask all of you, before purchasing this product please consult your physician and get his opinion. Don't just hop onto a bandwagon because someone links some random science that 'sounds good'.

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Gluten is a compound consisting of the glycoproteins gliadin and glutenin. Gluten itself is not the problem, but when it's digested it's broken down into polypeptide fractions by peptidases (enzymes). This allows the peptides to cross the cell membrane as amino acids which then causes the damage. These digestive enzymes are crucial in the process of turning gluten into the actual offending proteins that are so harmful to our health. Without enzymes there would be no reaction between the gluten and our intestinal walls but that would also mean that no digestive processes would occur and we would die of starvation.

This is confusing to me. I thought I had understood that gluten did not cause damage directly, but that it was the antibodies reacting to the presence of gluten that causes the damage. Maybe I'm just getting way ahead of myself even asking, but does the gluten itself actually react with intestinal walls?

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Rachel,

I hope you (and anyone else) don't take my example of my distrust of blood test studies as a veiled endorsement for EnteroLab. :lol: Maybe your discussion of EnteroLab had nothing to do with my example, I dunno, but I just wanted to be clear... You won't find me pushing EnteroLab (unless maybe if you dig up old posts of mine from a year ago or so...)

At this point in time, I feel pretty ambivalent- torn- about Dr. Fine and EnteroLab. EnteroLab's methods of stool testing can certainly be useful for some, especially if they seem to be getting mixed results from a trial gluten-free diet, and I think that it should be taken seriously and studied more... but as you said... As of now, they're not able to diagnose the cause of the intolerance- which can be very important.

Again, the fact that Dr. Fine hasn't published for peer review doesn't impress me that much... I'm learning that that process isn't nearly so black and white as most people think. I don't want to say much more on that at this point, because I've only recently started delving into that... I have a lot more research to do. I only caught onto it to begin with while looking at alternative treatments for Sarcoidosis, which my mother was recently dx'ed with.

Anyway...

As a matter of fact, in general, and in most instances, I certainly agree... personal experiences are very relevant and valid. I would be the last person to look at someone and say, "Oh this helped you? Prove it." I would hope that I'd never be so presumptuous. BUT...

For me, it goes back to this... I know that damage can occur in a Celiac's body without them knowing it. And we know that that damage can cause so many long term problems, like infertility, migraines, cancer, brittle bones... These dangers make any possible treatments (and I'm using that term loosely) a minefield of risk.

Currently, my thinking is leaning toward something that you and a couple others have mentioned as a possibility- That these enzymes improve general intestinal health, thereby enabling the body to shorten/lessen the symptoms of a glutening. That would make some sense to me, as there are many Celiacs I've talked to who've been gluten-free for years... and now do not have strong or debilitating reactions when they are accidentally glutened. Same concept- after years of being gluten-free, their gut is now much healthier.

Having said that, even a Celiac with the healthiest gut, who now has minimal symptoms from the occasional cc... knows that there is the potential for damage at every exposure to gluten- whether they have a strong reaction or not.

So... while I certainly don't think there's harm in taking the enzymes (and I've never said I thought they were directly harmful)... I think people need to be very, very careful about why they take them. And I just have a very bad feeling that a lot of people who take them may participate in more risky behavior, even such as eating out, than they would otherwise.

(NOT EVERYONE who takes them, please don't be insulted by that- Mango and anyone else who uses the enzymes- I'm not implying that you're not careful about you're diet!!!)

It's not that I feel it should be taken off the market, or it shouldn't be available. But there are a lot of Celiacs out there who've been misinformed and/or under-informed about their disease, and when they see this product at the health food store... I think it's dangerous, and it worries me.

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It's unlikely that adding more enzymes would be harmful as our body produces enough to cope with the digestive tasks at hand, but it surely doesn't help. The 'breaking apart' of gluten is crucial for the reaction to take place.

Are you saying that its the actual process of normal and proper digestion of gluten that actually CAUSES the immune reaction??

So if we are better able to digest gluten we are MORE susceptible to having problems with it??

Yeah...I'm having a little trouble understanding that part because what you're saying is that its better for the body to be dealing with undigested gluten...and that its much worse when the gluten is digested and passed through more efficiently?

I would tend to disagree that our bodies produce enough enzymes to cope with the digestive task at hand.....afterall, thats why many people develop food intolerances in the first place.

Lactose intolerance is caused by lack of the necessary enzymes. ALL foods require enzymes in order for proper digestion. We can become deficient in any type of enzyme when the intestines are damaged.

If what you're saying is true....then there would be many reports of a worsening in symptoms caused by the introduction of digestive enzymes.

I would like to point out that Peptizyde (which only targets the proteins) HAS actually worsened the reaction to gluten in some cases of Celiac Disease. Thats because this enzyme formula *only* addresses the proteins...and when they are fragmented (but still containing undigested carbohydrates) they are causing more problems once they reach the small intestine (Peptizyde works in the stomach).

This enzyme by itself should not be taken by Celiacs....because if there is some exposure to gluten the reaction may be worse..and it was reported in 12 children who did have Celiac Disease. The enzyme is very high in protease....which is good for those of us who dont have Celiac...and for the majority of the autistic children...however, its not good for Celiac's.

I've stated this in several threads regarding enzyme useage. Glutenease is recommended for Celiac's who wish to take an enzyme for concerns regarding cross contamination (it contains all of the enzymes necessary to break down the proteins and the carbohydrates). Peptizyde is not recommended as it only contains high amounts of protease. This is why I havent been discussing Peptizyde in this thread....its specifically for non-celiacs. Non-celiacs actually represent a much larger percentage of people who are gluten intolerant.

Apparently the part of the gliadin in gluten that causes problems to a person with celiac is not the protein or peptides derived from the protein, it is portions of gliadin carbohydrate. Although the protein can antagonize the situation (and cause the peptide probelm), the enzymes needed to break down the part of gliadin reactive to celiacs are the amylases and some subgroups of amylases (other enzymes that work on starch bonds such as glucoamylases).

This correlates exactly to what we have seen with many families using enzymes. The proteases create more, smaller pieces but would not necessarily break down the carbohydrate bonds (if at all), thus making the situation for a celiac eating gluten with protease enzymes worse than if they ate gluten without protease enzymes. It also follows that some people with suspected celiac have done better with the the amylase containing enzymes with gluten. So a person with suspected celiac should be taking enzymes for carbs with gluten contamination or infractions as well, not just the proteases.

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

Celiacs who are only taking proteases can have a worsening of symptoms. The situation that you're describing is only referring to the breakdown of proteins...but complete digestion depends on other enzymes as well.

Celiac's who are taking something such as glutenease feel better...its addressing both the protein and the carbohydrates. People with autism or peptide problems due to leaky gut....will do better with something like Peptizyde which is designed specifically for breaking down the proteins. In addition most will also take another formula to address carbs, fats, lactose, etc.

In these non-celiac cases where peptides are a big problem Peptizyde is used....because it contains a large amount of proteases. If other enzymes are included into the formula...the amount of proteases must be reduced. This is why in these cases two seperate formulas are used....because the need for high protease is great.

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This is confusing to me. I thought I had understood that gluten did not cause damage directly, but that it was the antibodies reacting to the presence of gluten that causes the damage. Maybe I'm just getting way ahead of myself even asking, but does the gluten itself actually react with intestinal walls?

It is the antibodies which cause the damage....so you are correct.

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Don't just hop onto a bandwagon because someone links some random science that 'sounds good'.

Most physicians arent recommending probiotics while they're handing out the antibiotics....and its not "random science" that beneficial bacteria are essential for optimal intestinal health. Without the correct balance of good/bacteria in the gut...we can experience many health problems. How many people here have had their physician recommend probiotics??

I can tell you that none of mine did.

Yes...the role of probitics does "sound good" to me....it makes sense to me. Same with enzymes....it just makes sense.

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Thanks UncleZack :)

I also am happy to read from the experiences of others. The vast majority do seem to report positive experiences....which in my opinion is a very good indication that enzymes are beneficial.

Also, being completely natural....they are not at all harmful to the body (with the exception of rare allergic reactions). You cannot "overdose" on enzymes...if they are not utilized within a timeframe...they are of no use....however, they are not harmful in any way. This is more than I can say about prescription drugs which have many side-effects.

I actually do have a problem with gluten...and I was gluten free for 3 years prior to taking the enzymes. I do not have Celiac Disease....so for me the intestinal damage did not begin with gluten...nor did it resolve with the removal of gluten. I have many other food intolerances/leaky gut/dysbiosis, etc.

I'm a non celiac and I'm currently working on the other issues with the help of my doctors.

I did have an interest in the enzymes for my own purposes...so that was my primary reason for doing the research... and I also discussed it with my Dr. I did learn alot about the benefits for those who have Celiac in the process of learning about the enzymes.

I'm happy that you'll be sticking around and I'm sorry that you were greeted with such skepticism. :(

Rachel,

I went back to the first post in this thread last night and reread everything ever posted.....again! I found I was under the wrong impression. You have Gluten intolerance, but not Celiac. Sorry I got that confused.

You are lucky to have found a doctor who is knowledgeable about your issues. You have been through a lot!

I live in a small town on the Oregon coast and although we have some excellent doctors, none of them I have visited have much knowledge about Celiac Disease/Gluten Intolerance. My doctor spends most of our visit asking "me" about my gluten experiences, not to offer any help, but for "his" own knowledge. I don't mind this as long as he takes the time to address the reason I am really there. I believe he is absorbing some knowledge from my experiences and hopefully is using what he has learned to give him a more open mind when other patients come in with complaints that could possibly be allergy related. So many doctors treat people for IBS (they generally recommend eating a lot of whole grains) or Fibromyalgia (treated with the anticonvulsant Lyrica which has negative side effects and can cause suicidal thoughts) when their real problem "could" be a food allergy. I'm not saying that IBS or Fibromyalgia couldn't be a disease of their own, but I had all of the symptoms of both diseases and when I went gluten free, the symptoms went away. The aches and pains and spaced out feelings took longer to go away than the digestive problems. I think the aches and pains and spacey feelings were caused by leaky gut and as it healed, those symptoms began to disappear. Here's a link about one person's experiences regarding Fibromyalgia: http://www.cpmission.com/main/gluten.html

Googling Celiac Disease vs Fibromyalgia, you will show more results on this subject. This is probably going to open up a whole new can of worms, but maybe if there is a relationship between these diseases, it may help someone get well. I am in no way saying that any of these theories are factual or that there has been enough research done to be sure, but they are possibilities worth considering. Medical science is finding out that there is room for new ideas and improvements in treatment for diseases. It's called progress.

My daughter is an RN and had once told me that Fibromyalgia as a name doctors were giving to a set of symptoms they can't explain or find a cure for. According to conversations she has had with doctors about the disease, the doctors in general think that these people are just whiners who want pain medication. I believe that if most people say they have pain, explainable or not, they really do have pain.

The hostess at the restaurant we like to eat at confided in me one evening that she was having a lot of back pain and had been diagnosed and treated for Fibromyalgia. She didn't like the side effects of the meds her doctor was giving her, so she quit taking them. I asked her about her symptoms. I commented to her that it sounded like we both have the same thing. When I got home, I did some research. I was amazed that the symptoms were nearly the same as symptoms for Celiac Disease. I told her later of my findings. She agreed that she should try a gluten free diet, but said she didn't think she could do it because she "lives" for and on bread.

An old topic, but I feel it's worth re enforcing something you said earlier. You have tried to get the point across many times that less symptoms=less damage. You never said that less symptoms=no damage, but I think some people are reading that into your equation. From my experiences, I have to agree with you that less symptoms=less damage. I only take enzymes when I suspect that I am in a situation where I may get cross contamination. I had at an earlier point taken them with every meal. I needed them because my digestion was so compromised that without them, rather than digesting, the food would literally rot in my intestines. I still have minor trouble digesting potatoes, some gluten-free grains, uncured pork and cooked carrots and will take enzymes if I feel I need them, but most foods digest fairly well. Anyway, there are rare times that somehow or somewhere, I pick up some some gluten and don't know it and haven't taken any enzymes. By the time I realize I've been glutened, I take the enzymes, but it is then too late to completely stop the reaction. I'll try not to get too graphic here, but what happens in the bathroom the next day isn't pretty and it takes days to recover. Therefore, I know at those rare times, more reaction=more damage. When I eat out, I always take my enzymes and I can tell if I get CC, because I get a bit gassy the first hour after eating. I am extremely sensitive to even the smallest amount of gluten. If I get no gas, I know I didn't get CC'd. I don't have the morning after symptoms either way, but I have to agree with some of the other posters that it is very possible that "some" damage may occur when we get CC, even when taking enzymes.

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i just wanted to say this thread is very fascinating.

I have ordered the enzymes that rachel is talking about. I have not started to take them yet. I am still researching and debating on when to start.

I for one decided to order them to help more so with casein and soy. I also would love to take them before i go eat someplace else were the risk of cc is high. For the last 18 months i have been afraid to eat anyplace else besides my house and it is getting old. I hate turning down invitations. If this can help me go places and eat safely, then to me that is good enough.

I will probably never eat gluten cause im afraid to. I am still not 100 percent sure if i am celiac or gluten intolerant due to toxicity and other issues. Trying gluten just is not an option for me, right now.

I will post how things go when i start to take the enzymes.

paula

Paula,

For many years, Friday night was our night out for a couple of cocktails and and a meal away from home. It was the barrier between the work week and the beginning of the weekend. It was something we looked forward to. I have always had stomach problems, but no doctor could give me the right answer. I had gluten intolerance which in turn became celiac disease. When I went on a gluten free diet, I felt much better, but nearly every time we went out on Friday night, I was sick within an hour or two. I was ordering foods that should be safe, but I was getting enough cross contamination to make me sick. My wife could eat a truckload of wheat and not get sick, so it made it difficult for her too. Either cooking completely gluten free or making two separate meals and washing her hands a bazillion times and having two sets of cooking utensils to wash up and twice the kitchen cleaning to do. It got worse. I came to a point where I refused to eat in a restaurant at all. Traveling became tough. We cooked on the road or set up the gas stove on the tailgate in the parking lot of the motel and cooked a meal and ate in our room. Actually, it was kind of fun at first, but it got old and my wife was embarrassed by it. This went on for over a year. Eventually, I was introduced to enzymes and used them for general digestion help at first. Eventually, I got brave enough to eat a "hopefully" safe meal in a restaurant. Just to be safe, I took two capsules before I ate and two after. It worked! The cook stove we carried on our travels is collecting cobwebs in the garage and as long as I am cautious about what I order (as always) I don't get sick. I probably still embarrass my wife by asking the waiter or waitress a lot of questions about how the food is being prepared and handled. Sometimes the waiter or waitress doesn't know, but are happy to go ask the cook or chef. I have had them back in the kitchen reading labels and to be honest, I don't feel embarrassed at all about trying to stay healthy. I always thank the people for the special attention and tip well. It beats getting sick. Good luck. I hope this works for you too.

P.S. Take the enzymes as directed just before your meal or along with your meal.

Jack

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Rachel,

I hope you (and anyone else) don't take my example of my distrust of blood test studies as a veiled endorsement for EnteroLab. :lol: Maybe your discussion of EnteroLab had nothing to do with my example, I dunno, but I just wanted to be clear... You won't find me pushing EnteroLab (unless maybe if you dig up old posts of mine from a year ago or so...)

No...you're example had nothing to do with my mention of Enterolab. ;)

It just came to mind while I was responding and so my thoughts regarding Enterolab got included in that post...but I've actually been saying all of this for awhile now.

In my early posts (2005) I was very excited about Enterolab. It was only after I started researching and understanding things better that I started to question alot of things....and some things just werent making sense to me. Now I try not to get too excited about things and I just try to learn more about them so that I can make more informed decisions. I was not at all informed about Enterolab when I ordered my tests. Yes, I had read the site...and yes, some people here recommended it....so I just took that and ran with it. I didnt look at anything beyond that...and I hadnt been on this site long enough to realize that alot of people dont actually recover...or that there may be additional factors involved....or that I wasnt actually getting a "diagnosis".

Again, the fact that Dr. Fine hasn't published for peer review doesn't impress me that much... I'm learning that that process isn't nearly so black and white as most people think. I don't want to say much more on that at this point, because I've only recently started delving into that... I have a lot more research to do.

I think its been brought up before that there is alot involved in this process....however, for some time now Dr. Fine has stated that he is about ready to publish his findings. It seems like every year he is "almost" there...and yet nothing ever happens. Again, very recently I saw a post which stated that he should be publishing by next year (or something to that effect)...and yet I have heard this every year.

In my opinion he shouldnt be making promises that he is not able to follow through on. Lots of people are ordering his tests and these people deserve some follow through. I was under the impression 3 years ago that he was about to publish his findings....but it still hasnt happened.

Thats the issue that I have. The longer it takes the more skeptical I become...and this is mainly because he has been claiming that he is going to publish (and giving time frames) and then not following through.

I also have a strong gut feeling that his tests wont be at all accepted once he does publish....and they will never be used for diagnostic purposes. Until he actually publishes nobody knows.

Having said that, even a Celiac with the healthiest gut, who now has minimal symptoms from the occasional cc... knows that there is the potential for damage at every exposure to gluten- whether they have a strong reaction or not.

So... while I certainly don't think there's harm in taking the enzymes (and I've never said I thought they were directly harmful)... I think people need to be very, very careful about why they take them. And I just have a very bad feeling that a lot of people who take them may participate in more risky behavior, even such as eating out, than they would otherwise.

I agree with all of this. In my opinion its a risk every single time that a celiac chooses to eat out...or to eat at someone else's home...or when they eat processed foods...there is always risk...and then there are always going to be those people who are going to push the limits.

There are always going to be those people who will participate in riskier behavior....enzymes or no enzymes. Some people might start out very proactive....and discussing the issue with every waiter at every restaraunt...being very concerned about cc . Sometimes people start to "slack off" because they get comfortable with what they're doing....and eating out might become more frequent and the discussions with waiters might become less frequent. This is an example of risky behavior....but it happens.

Some people just take more risks than others. Some people do things for the right reason and others do them for the wrong reasons. Its not going to be any different with enzymes....people will try to use them for the wrong reasons. Those same people are most likely going to be taking risks regardless. Not everyone is as proactive with their health/diet as we are.

The best any of us can do is to take care of ourselves in all of the ways that we know how...and to pass on what we've learned when we meet people who may be taking risks with their health. We cant prevent risky behaviors...we can only share what we know and hope that some of it sinks in.

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I'm gonna say this and then I'm outta this conversation. I've already broken my own rules in this conversation. It's your lives, do what you want with them. Mine is the only one I can control so I'll go do that.

If you've got a wheat allergy or non Celiac gluten intolerance it's apparently a different issue for you. Congratulations on that, you're freaking lucky. Celiacs however face at the very least intestinal damage from even the smallest CC. So you avoid CC at all costs. You certainly don't try to mask it, if this product does actually mask it. If you succeed in masking it you'll never know it happened at this friends house or that particular restaurant and you'll probably go back there and do it again. I'd rather know than not know so I can act accordingly next time. This is also why I'm as informed as I can be, and as I can understand about how the digestive system works and how gluten effects it when one has Celiacs. I don't buy marketing spin anymore. I've spent twenty years in sales marketing and advertising. I know all to well how the game works and I don't fall for much anymore, particularly when my life and health is at stake.

The glaring inconsistencies in the pro arguments are almost laughable. First it doesn't prevent damage it just masks symptoms. Now it prevents damage AND masks symptoms. Which is it? And if it's not a Celiac treatment then they need to retool their marketing because right now that is how they're positioning this product and that ought to be a crime. One sentence of disclaimer does not invalidate all the rest of the hype. You can point to this sentence or that one and ignore the rest of the hype you've created, but that doesn't excuse you from the overall impression your marketing campaign makes on a person.

The results of exposure to Gluten is too life threatening for a Celiac to contemplate accidental exposure, again IMHO. My life is way to precious to me to risk it on the basis on someone's non tested, non scientific mumbo jumbo. Show me some double blind studies, something signed off on, something scientific and I'll buy it. My life is way way way to precious to allow some marketing person with no medical degree to endanger.

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The results of exposure to Gluten is too life threatening for a Celiac to contemplate accidental exposure, again IMHO.

I dont think anyone "contemplates" accidental exposures. Afterall, they are accidents.....they happen sometimes despite our best efforts.

If you've got a wheat allergy or non Celiac gluten intolerance it's apparently a different issue for you. Congratulations on that, you're freaking lucky.

I dont consider myself lucky...I have gut infections, leaky gut, enzyme deficiencies, etc.....do you wanna trade?? I would totally do it....as long as you dont have these other issues + Celiac. :P

The glaring inconsistencies in the pro arguments are almost laughable. First it doesn't prevent damage it just masks symptoms. Now it prevents damage AND masks symptoms. Which is it?

I know for certain that I have never said that enzymes mask symptoms.....and I dont believe that they *can* mask symptoms. Its seems highly improbable to me.

I also have never said that they dont prevent damage from occuring in a Celiac. I said that they may....or they may not...we do not know.

However, they do improve digestion...which in turn promotes healing. People use them and they feel better with them...thats good enough for me. My opinion would not change if I were a diagnosed Celiac.

Celiacs however face at the very least intestinal damage from even the smallest CC. So you avoid CC at all costs.

Does this mean that you never eat out, never eat at anyone else's home, never eat prepackaged foods and have a home which is completely gluten free??

I think most people want to enjoy a meal out once in awhile....and they want to be able to sit at a friends dinner table and eat without ending up sick from cc. So most people do not avoid cc at all costs...they are aware of it and they do the best they can to avoid it....but its not realistic to think that it never happens.

You keep suggesting that enzymes "mask" symptoms.....but I have never seen anything that would indicate that this is true. As I've stated numerous times...I dont believe that its possible. I think the fact that less symptoms occur means that the digestive system/intestinal lining is in a healthier state than it was prior to taking enzymes. If symptoms were more severe prior to enzymes...I think it would indicate that there is more distress and less healing taking place.

Thats my opinion...I still cant wrap my head around the idea that feeling worse is better for the body....and that feeling good is actually more harmful?? :unsure:

And if it's not a Celiac treatment then they need to retool their marketing because right now that is how they're positioning this product and that ought to be a crime.

Ummm...it is not being positioned as a treatment for Celiac. I never got that impression. They say that its not formulated to be used as treatment for Celiac Disease....is that not good enough?

I really dont think they need to restate this in every paragraph on their website. To me its obvious that the product is not meant for that purpose.

The incidence of non celiac gluten intolerance is much higher than that of Celiac Disease...and the product can help these people tremendously. Since you were involved in sales marketing and advertising....if this were your product....and it was an effective treatment for many cases of non celiac gluten intolerance....how would you advertise your product??

I'm pretty sure you would market it in the same way....by stating that it is NOT a treatment for Celiac Disease...and then proceeding to let the "rest" of the people who are gluten intolerant (for other reasons) know how they can benefit from the use of the product.

I dont understand what is so "shady" about this. I dont think they need to "retool" their marketing....the product is designed for people who are gluten intolerant...not people who have Celiac Disease...period.

Like I said earlier.....if the product actually helps those with Celiac as well....then great....but they are not marketing the product towards those who have Celiac. You are simply taking the words "gluten intolerant" and applying that to Celiac Disease.....even though they state that its not a treatment for Celiac Disease.

My life is way way way to precious to allow some marketing person with no medical degree to endanger.

Nobody is telling you to take these enzymes. I'm simply clarifying because there have been some things posted here which simply have no truth to them and are based not on any actual knowledge of enzymes......but rather personal issues with alternative products.

If you dont trust enzymes...that is certainly your right....I have no problem with it. However, I do have problems with misinformation.

I already posted that the CEO of the company which produces the enzymes I take has a medical background and a degree....he is not a "marketing person".

In case you missed that:

Dr. Houston obtained a B.A. degree in Biology from Hendrix College in 1979. He then was awarded a B.S. degree in Medical Science in 1980 and a Ph.D. in Biochemistry from the University of South Alabama College of Medicine in 1987. Dr. Houston's graduate work focused on how the aging process affected certain enzyme systems.

Following the defense of his thesis work, Dr. Houston accepted a post-doctoral position at the University of Virginia where he became involved in several fields of research, including ligand-receptor interactions of the adenosine receptor, diabetes, and mechanisms of how cells respond to environmental signals. Dr. Houston's work was funded by the American Heart Association.

In 1990, Dr. Houston accepted a position at Saint Louis University School of Medicine. While there, he obtained the position as Assistant Professor in the Department of Pharmacology and Physiology. His research focus was on characterizing the cannabinoid (marihuana) receptor as a possible model for Alzheimer's research. Dr. Houston's work was funded by several grants from the National Institutes of Health. He published several peer-reviewed papers, as well as presenting his finding at several symposia.

In 1997, Dr. Houston left academia for industry, and accepted a position as Manager of Research and Development at National Enzyme Company. While there, he upgraded the existing lab and instituted more advanced methods of analysis. Instrumental in new product development, he is the formulator and inventor of SerenAid, an enzyme product currently distributed by Klaire Laboratories.

In March of 2000, Dr. Houston left National Enzyme and became a scientific consultant to the dietary supplement industry prior to founding Houston Nutraceuticals, Inc.

His peer reviewed atricles are published in scientific journals.

So while you're certainly entitled to your opinions...I dont believe that its entirely accurate to refer to enzymes as "non tested, non scientific mumbo jumbo".

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I have a link to 3 short videos....an interview with the Dr. that I mentioned in my previous post. He designed the enzymes which have helped many autistic children...or children with ADD, ADHD and other health problems related to dietary issues.

These enzymes were designed specifcally to address the problems these kids are having with gluten and casein....it has nothing to do with Celiac Disease and Celiac is not mentioned in this interview. It is only referring to autism spectrum disorders or digestive problems which are common in the population and unrelated to Celiac Disease. I just want to make that part clear. :)

He does briefly mention the benefits of probiotics as well. He also talks a bit about phenol intolerance....which is another dietary problem which is common in autism spectrum disorders. I also have phenol intolerance (salicylates, amines, food dyes, preservatives, etc).....as do other members of this board.

In addition to the enzymes which are used to address gluten and casein.....he also developed enzymes to deal with phenols. I take these enzymes and they have helped me.....my reactions are less severe...and I can tolerate more than I was able to tolerate prior to taking these enzymes.

In the 3rd video he gets into more detail about how the enzymes actually work on the gluten and casein peptides. Again, this is addressing problems with peptides and opiate receptors...a major problem in autism...a seperate issue from Celiac Disease.

He discusses how these enzymes work by breaking down gluten and casein in the stomach.....before these problematic peptides can be absorbed in the small intestine.

Woolygimp...you might want to listen to that part.....since I think you stated that its not possible for anything to be broken down in the stomach. This might give you a better understanding.

http://www.corganic.com/videosubdevinhouston.html

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Hooookay, confession time.

It so happens that I actually do take digestive enzymes myself, if I've been cc'd. I've been taking them for a few months now. I actually truly, honestly, didn't even equate what I take with what we've been discussing here until tonight. :blink:

It doesn't really negate anything I've already posted, though. :rolleyes:

It's never occurred to me to take them before I eat out or eat at a friend's house. In my experience, they don't work like that. I take them for one reason-- they are the only thing I've found that ease the severe, crushing heartburn that is the first symptom I get of a glutening.

They work fast, and I may take them three times in a day if I need to. It doesn't do squat for any of my other symptoms. And I've never thought that they've lessened or prevented any damage the exposure might've caused.

The ones I take are NOT geared toward anything to do with gluten, as far as marketing and packaging. Like VioletBlue, I do have a major problem with GlutenEase et al being marketed toward the gluten intolerant community... and yeah, I think that does include Celiacs.

Rachel, like you and I have both said before... people who are constantly reading, learning, researching, and delving into the depths of their illness... are not the norm.

How many Celiacs in this country even know that there is any type of gluten intolerance other than Celiac? I'd wager less than 1/2, at best. What are those people going to think when they see GlutenEase? What are they going to think when see the disclaimer about not diagnosing or treating a disease? They're going to think it's nothing more than a CYA statement (which is exactly what I think it is.)

So anyway... there ya go.

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