Glutenease

[Rachel--24]

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?

I'm sure that you're correct....and there are also Celiac's in this country who dont know that they need to avoid barley and rye.

There are also Celiac's in this country who think that spelt is gluten free.

There are also Celiac's in this country who think that its ok to eat gluten one day a week.

My point is....there are ALOT of people with Celiac who arent all that educated about their disease. Heck...I dont even have Celiac and I probably know more about this disease than half of the biopsy proven Celiac's in this country.

What can we do about that?? Is it really Enzymedica's fault that some people who are diagnosed with Celiac dont have a good understanding of their condition??

Would it be better for Enzymedica to take their product off the market...so that its unavailable to all of the people who are taking it for the RIGHT reasons...and who are benefiting from it?? Should they do this simply because some diagnosed Celiac's dont understand their disease??

Keep in mind that non-Celiac gluten sensitivity is a much more common condition in this country. Celiac's represent a much smaller portion of the gluten intolerant population. I think *most* of the people who have Celiac Disease would at least know that gluten is the problem and they CANNOT eat it if they wish to remain healthy.

So we're really only talking about a very small percentage of people who would actually think its OK for them to eat gluten if they take these enzymes.

So should a product that is beneficial to MANY be taken off the market because a small percentage of the Celiac population does not understand the basics of their disease?

I dont think that a person who has Celiac has to be constantly reading, learning, researching and delving into the depths of the disease to understand that they cannot "cure" Celiac with enzymes. Also, I think it would be highly irresponsible if they attempted this without making any effort to investigate the product first.

There are people with diabetes who dont take their disease as seriously as they should....this can be the case with *any* disease.....and Celiac is no different.

Honestly, if I was an uniformed Celiac who purchased these enzymes and ended up sick because I went off the diet (which is the only effective treatment)....I would have nobody to blame but myself. If I had asked questions.....if I had contacted Enzymedica.....if I had taken the time to look into it...I would know for sure that this product is not going to "cure" my Celiac Disease.

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

The ones that you take are not going to provide the same results for a person needing enzymes that are targeting gluten specifically. Thats why they are not marketed toward the gluten intolerant community. Its a different formula....and different enzymes act on different foods. GlutenEase is formulated to address this issue specifically....so thats why its marketed toward those who are gluten intolerant.

There are enzymes marketed specifically for those who are lactose intolerant.

There are enzymes marketed specifically for people who have problems with yeast overgrowth.

Enzymes specifically for fat digestion, or for carbohydrates, or for breaking down excess fibrin, or for a vegetarian diet, or for breaking down mucous, or for dealing with phenols (I need this one)....all of these are marketed specifically for their intended purpose.

There are alot of different enzymes available....and they all serve different purposes.

GlutenEase is formulated to assist the body in breaking down gluten. Thats its purpose....so why would it be marketed in any other way??

....and why is this such a crime??

Personally, I feel that each person is responsible for maintaining their health. Nobody else is going to put as much effort into understanding our diet restrictions or our health issues.....or what it takes to prevent damage from occuring.

If we cant make this effort for our own well being.....then I dont think we can place blame on anyone but ourselves. We cant blame the waiter because we didnt take time to explain our dietary restrictions, we cant blame our friend's who prepare our food and yet really dont have a full understanding of what "gluten-free" means... and we cant blame Enzymedica for calling its product "GlutenEase".

I dont think it would be fair to eliminate a very helpful product.....simply because some people are not willing to put any effort into understanding their disease....or what it takes to maintain their health.

If I cross the street without "looking both ways"...and if something happens to me because of it...I guess it would be noone's fault but my own.

So I guess we just see things very differently as far as that goes.

[Unclezack]

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.

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

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.

Sarah,

Even a bottle of non prescription multi vitamins has the same disclaimer, but doctors often recommend that their patients take a vitamin supplement. I want you to know I'm not picking on you. A lot of people have quoted the same disclaimer. I looked at all of the labels on the supplements in our home and they all have it. I don't know the FDA rules and regulations, but I believe that if the supplement isn't FDA approved that it has to be printed on the label.

I personally don't feel extremely secure with a drug just because FDA has approved it. They have been approving a lot of drugs that shouldn't be on the market. Lame Advertisement, a drug to help people quit smoking is one of the recent ones that is under a lot of scrutiny because it is leading a lot of users to suicidal thoughts. How about Oxycodone, it was supposed to be a wonderful pain reliever with less chance of addiction. It's one step below heroin! When you get a prescription at the pharmacy, it should come with a sheet explaining what the drug is and the proper dosage, etc. Also on this paper are listed the possible side effects......well, they are only listing the most common side effects. If you look the drug up at drugs.com, they list all of the possible side effects. Most drugs have a list of side effects as long as your arm. Some pretty scary ones too. It's certainly enough to make me not want to take any prescription drugs.

I think I know exactly what you are saying about the heartburn. The kind that hurts clear into your throat? Feels like what you would imagine a heart attack would feel like? I get it too, but not because I have been glutened. There are certain safe foods that just don't agree with me. Potatoes and chocolate affect me the most. Papaya enzymes work wonders, but I had to quit using them because they either contain sorbitol which can cause digestive problems or they contain some form of high fructose corn sugar which in my system is nearly as bad as getting gluten. If you don't have to limit your sodium for any reason, a level teaspoon of sodium bicarbonate stirred into about 4-6 ounces of water brings quick relief. It helps for me to wash it down with a few more ounces of plain water. Or put a slice of fresh lime in a bottle or glass of carbonated water. This is kind of nice to just sit down and sip it like any beverage, and it tastes pretty good too. It's the closest thing I drink to a soda pop, so it actually can be a treat as well as getting rid of the heartburn. I know a lime is acidic, but there is something in that combination that works. With either the soda or carbonated water/lime mixture, sit upright, leaning a bit forward until a big burp comes out. The heartburn and overfull feeling just disappear! The relief is better and longer lasting than any antacid I have used in the past. Hope this helps.

You stated that you "do" take digestive enzymes if you have been CC'd. If you are already feeling the symptoms of CC, it's too late for the enzymes to do much good. You need to take them when you suspect that you are possibly going to get CC'd, before you eat the possible contaminated food.

I agree that a lot of people with allergic reactions to certain foods don't do their homework and learn how to protect themselves, but I do believe that the people who are active in this thread are concerned, by sharing information and learning from other people's experiences.

Here is a link to an article everyone should read about an upcoming FDA approved pill that will supposedly allow gluten intolerant people to eat a limited amount of gluten.......read about it and then continue down the page and read the comments. Personally, I'll stick to my gluten free diet and enzymes. A lot of the people knocking enzymes because they aren't FDA approved should read this. I hope everyone here checks this out!

https://www.celiac.com/articles/21530/1/A-S...ease/Page1.html

[ravenwoodglass]

This reply addresses whether the gluten response can be started in the oral mucosa, which is a part of the digestive system. Yes I do know we are discussing digestive enzymes and whether they can prevent a gluten gut reaction in someone with celiac. For folks with celiac the gluten reaction begins as soon as we get an offending molecule into our mouths. The immune response then begins. How many of us have had an 'uh oh' moment and spit out what we had in our mouth but still gotten ill? How many of us become ill from even a tiny amount of CC that we can't even really see? This occurs because the antibody reaction begins with even a very small amount of the offending gluten. They have been working on testing for the oral mucosal, it has already been shown in studies that a gluten suppository will cause a reaction when inserted in the rectum in folks with celiac disease. Their system will react and form antibodies from the absorption in the mucosal lining. Those antibodies are then going to flow throughout the bloodstream. Will this cause a 'gut' reaction in everyone? I don't know for sure. Will it cause an antibody reaction for those who have autoimmune issues with gluten, I think it is clear that it will although some may disagree and that is fine.

My point in the discussion is that although the product mentioned may help with the gut effects of gluten I don't think it will prevent the antibody action that attacks the rest of the body. Many of us have neuro effects from gluten and those who do may be like me. I have the neuro effects and effects on my salivary glands the second I get gluten into my mouth. These antibody reactions occur days before the gut problems set in. Within seconds of getting gluten into my mouth these effects are starting. I have not said I don't think these products have any use at all, for those with 'just' gluten intolerance who only have a gut effect they may be beneficial. But I do believe strongly that regular use of these products by folks who have celiac may prevent a gut reaction but I do not believe they are effective in fully preventing the antibody effect which gives us so much misery involving our brain, joints, muscles, skin etc. To believe that I will need to see some research that shows that folks with DH have the reaction prevented in the skin by the use of these, something that the enzmes never did for me. Not saying that it is not possible but just that I haven't heard of it.

Here's some links referring to testing that is being done on the mucosal testing.

Open Original Shared Link

The following explains my thinking much better than I can-

Open Original Shared Link

From an immunology point of view, the mouth is situated at the beginning of the GI system and, as a part of it, is considered to belong to the gut-associated lymphoid system (GALT). Consequently, after antigen activation, proliferation and partial differentiation in GALT, memory B cells and T cells migrate to the other parts of the GALT, including the oral mucosal lymphoid tissues (Brandtzaeg P in Chem Immunol Mac Donald ed. Karger 1998, Basel; p 1-26). There, these cells,in sensitized celiac disease patients, may easily react to gluten and its peptides. More recent findings suggested that the oral mucosa of celiac disease patients could be useful to evaluate the response to a gluten-challenge (Lahteenoja H. Clin Exp Immunol. 2000; 120: 38); in fact, performing a submucosal injection of a gliadin peptide in treated celiac disease patients, were observed histology changes with a sensitivity of 73% and specificity of 80%. These results, although very interesting, are inadequate for diagnostic purposes because of their low diagnostic accuracy. However, the possibility to perform the diagnosis on the oral mucosa is important because nowdays many celiac disease patients might present with a little tiredness or no symptoms, and they can be highly resistant to the idea of small bowel biopsy. Thus, according to the demonstrated immune-reaction to gliadin of the oral mucosa, we will evaluate the possibility that oral mucosa biopsy samples might be useful for celiac disease diagnosis and/or for the gluten challenge.

[Rachel--24]

There, these cells,in sensitized celiac disease patients, may easily react to gluten and its peptides.

To me this sentence is stating that a "sensitivity" to gluten can cause a reaction. This is not limited to people with Celiac Disease and in my opinion is a completely seperate issue from Celiac Disease. Its a different immune response.

I'm sensitive to ALOT of foods...including gluten.

I'm sensitive to oranges, bananas, chocolate, spices....and I can go on and on about my sensitivities...but it might just be the longest post I've ever made.

Sometimes I eat a food and almost immediately I feel a reaction....sometimes I'll get a blister in my mouth very quickly from some offending food or ingredient.

Its a completely different reaction and in my opinion it has everything to do with leaky gut....because that is how the immune system becomes "sensitized" to these antigens in the first place....because they have passed through the gut and into the bloodstream.

I can tell you with absolute 100% certainty that I had never experienced any of these types of food sensitivities UNTIL I developed increased intestinal permeability....which is NOT Celiac Disease.

So while some Celiac's *might* have a problem with leaky gut as well....and they *might* have alot of additional sensitivities or an immune "sensitivity" to gluten (as a result of previous entry through the intestinal lining)....this is not going to be the case for every person with Celiac Disease. Also, you will find this same issue in those who have leaky gut without having Celiac Disease.

I have the neuro effects and effects on my salivary glands the second I get gluten into my mouth.

In my opinion this is not related to Celiac Disease. Even though you might have extreme sensitivity to gluten....this might be why you never tested positive for the disease and since you also dont carry either of the main genes we cannot be 100% sure that Celiac Disease is a cause for any of this. To me it seems more related to leaky gut.....as this type of reaction is pretty typical for those who have problems with increased intestinal permeability (for whatever reason).

But I do believe strongly that regular use of these products by folks who have celiac may prevent a gut reaction but I do not believe they are effective in fully preventing the antibody effect which gives us so much misery involving our brain, joints, muscles, skin etc.

These are also symptoms commonly associated with leaky gut. I think that a person with Celiac Disease who does NOT have a problem with leaky gut is also very unlikely to experience these issues from cross contamination.

Antibody production can only occur where gluten is present. If you are experiencing autoimmune reactions OUTSIDE of the gut....in your joints, muscles, etc...then that would only be because gluten is LEAVING the gut and entering your system. That is a result of leaky gut and if its happening to this day with the severity that you describe...then I would have to assume that your gut still has not been able to heal itself completely.

Thats just my opinion. When we're talking about Celiac Disease we're talking about an autoimmune reaction which occurs in the small intestine. When we're talking about all of these other autoimmune issues OUTSIDE of the gut....that is not the same as Celiac Disease and it can happen to a person (such as myself) who does not actually have Celiac Disease.

In these cases of leaky gut, yes, I believe the enzymes are very useful....even moreso than for those who have Celiac Disease. By improving digestion there is less inflammation occuring in the intestinal tract.....less inflammation = more healing taking place.

If the gut is allowed to heal....and if the immune system calms down and becomes "desensitized" to these antigens (which have been passing through the intestinal lining for such a long period of time)...then yes, in the long run its much better for the body and for the immune system....and these reactions are less likely to occur.

So if you believe this..."But I do believe strongly that regular use of these products by folks who have celiac may prevent a gut reaction " ....then it should also make sense that by improving digestion you are also improving the condition of the gut overall. Even without gluten exposure....a sluggish digestive system can cause health problems which can eventually lead to a damaged intestinal lining.

One of the causes of leaky gut is enzyme deficiency....if the body is not producing enough enzymes on its own....there is inflammation (from undigested food) which can ultimately lead to damage to the intestinal lining. Also, this type of situation can alter the gut flora.....leading to overgrowths of yeast and/or bacteria...which then exacerbates the leaky gut issue.

So yes...I do believe that by improving digestion there is a strong potential for less autoimmune issues OUTSIDE of the gut...simply because the food is less problematic when it is digested properly....and it is less likely to pass through the gut. This promotes healing!

Obviously that would not be the case for IgE mediated "true" allergies.....but here we are talking about "sensitivities" which are most often a result of increased intestinal permeability.

For all of the reasons that I just mentioned I do not think this study will result in a new diagnostic test for Celiac Disease.....because it is not specific for that. I'm sure that the results can be similar outside of the Celiac population in those people who are non-celiac gluten intolerant.

I believe with this testing method we would have the same concerns that many of us have with Enterolab's testing method. Its simply not diagnostic for a specific condition/disease. The antibodies will not be limited to those who have Celiac Disease.

Also, "sensitivity" is not the same as "autoimmune".

They already have saliva testing available for food intolerances..including gluten. Its no different from Enterolab...its a type of food intolerance testing and the results (if positive) do not tell you anything other than whether or not you are sensitive to that food.

I believe that is why they make this statement regarding this method of testing.

These results, although very interesting, are inadequate for diagnostic purposes because of their low diagnostic accuracy.

[Scott Adams]

Unclezack:

You are drawing conclusions about the study that are false and misleading. The study of AT-1001 is ongoing, and it is not yet known whether that drug will ever get FDA approval. The findings of their Phase 2A clinical trial were not very positive (at least that is my interpretation), which led them to have to do a phase 2B study. More about this can be found at:

https://www.celiac.com/articles/21592/1/AT-...llet/Page1.html

Additionally, the enzymes in Glutenease are not the same as what is being studied in AT-1001, so it is a false analogy--AT-1001 has nothing to do with Glutenease. Additionally even if they do get FDA approval AT-1001 is not meant to allow people to eat gluten again--it is only meant to counter minute amounts of cross-contamination, and it is still unknown if it will even do that.

In contrast, Glutenease is a totally different product that has never been studied. Any claims that it can do anything are based on pur anecdotal evidence, and this sort of thing can be very dangerous, especially to those who must be on a gluten-free diet for life but really don't want to be (uh, how many people is that?), and these people might be looking for any excuse to eat gluten again--like taking a pill called "Glutenease."

I predict that at some point in the not to distant future the makers of Glutanese will be sued by people who have been harmed by their claims (yes, even the name of this product can be construed by many to be a health claim), so I hope they have good insurance.

Take care,

Scott

Sarah,

Even a bottle of non prescription multi vitamins has the same disclaimer, but doctors often recommend that their patients take a vitamin supplement. I want you to know I'm not picking on you. A lot of people have quoted the same disclaimer. I looked at all of the labels on the supplements in our home and they all have it. I don't know the FDA rules and regulations, but I believe that if the supplement isn't FDA approved that it has to be printed on the label.

I personally don't feel extremely secure with a drug just because FDA has approved it. They have been approving a lot of drugs that shouldn't be on the market. Lame Advertisement, a drug to help people quit smoking is one of the recent ones that is under a lot of scrutiny because it is leading a lot of users to suicidal thoughts. How about Oxycodone, it was supposed to be a wonderful pain reliever with less chance of addiction. It's one step below heroin! When you get a prescription at the pharmacy, it should come with a sheet explaining what the drug is and the proper dosage, etc. Also on this paper are listed the possible side effects......well, they are only listing the most common side effects. If you look the drug up at drugs.com, they list all of the possible side effects. Most drugs have a list of side effects as long as your arm. Some pretty scary ones too. It's certainly enough to make me not want to take any prescription drugs.

I think I know exactly what you are saying about the heartburn. The kind that hurts clear into your throat? Feels like what you would imagine a heart attack would feel like? I get it too, but not because I have been glutened. There are certain safe foods that just don't agree with me. Potatoes and chocolate affect me the most. Papaya enzymes work wonders, but I had to quit using them because they either contain sorbitol which can cause digestive problems or they contain some form of high fructose corn sugar which in my system is nearly as bad as getting gluten. If you don't have to limit your sodium for any reason, a level teaspoon of sodium bicarbonate stirred into about 4-6 ounces of water brings quick relief. It helps for me to wash it down with a few more ounces of plain water. Or put a slice of fresh lime in a bottle or glass of carbonated water. This is kind of nice to just sit down and sip it like any beverage, and it tastes pretty good too. It's the closest thing I drink to a soda pop, so it actually can be a treat as well as getting rid of the heartburn. I know a lime is acidic, but there is something in that combination that works. With either the soda or carbonated water/lime mixture, sit upright, leaning a bit forward until a big burp comes out. The heartburn and overfull feeling just disappear! The relief is better and longer lasting than any antacid I have used in the past. Hope this helps.

You stated that you "do" take digestive enzymes if you have been CC'd. If you are already feeling the symptoms of CC, it's too late for the enzymes to do much good. You need to take them when you suspect that you are possibly going to get CC'd, before you eat the possible contaminated food.

I agree that a lot of people with allergic reactions to certain foods don't do their homework and learn how to protect themselves, but I do believe that the people who are active in this thread are concerned, by sharing information and learning from other people's experiences.

Here is a link to an article everyone should read about an upcoming FDA approved pill that will supposedly allow gluten intolerant people to eat a limited amount of gluten.......read about it and then continue down the page and read the comments. Personally, I'll stick to my gluten free diet and enzymes. A lot of the people knocking enzymes because they aren't FDA approved should read this. I hope everyone here checks this out!

https://www.celiac.com/articles/21530/1/A-S...ease/Page1.html

[Ridgewalker]

In contrast, Glutenease is a totally different product that has never been studied. Any claims that it can do anything are based on pur anecdotal evidence, and this sort of thing can be very dangerous, especially to those who must be on a gluten-free diet for life but really don't want to be (uh, how many people is that?), and these people might be looking for any excuse to eat gluten again--like taking a pill called "Glutenease."

I predict that at some point in the not to distant future the makers of Glutanese will be sued by people who have been harmed by their claims (yes, even the name of this product can be construed by many to be a health claim), so I hope they have good insurance.

Take care,

Scott

I have to say, it comes back to this for me, too, as I mentioned last night.

I know, essentially every person's health is their own responsibility. And I said a couple days ago, it's not that I think the product itself should be taken off the market.

But I do feel that the way GlutenEase is marketed is irresponsible. They imply too much that the average person is simply going to accept.

There are two prevailing scenarios when a person is dx'd with Celiac. Either their doctor explains and teaches the patient about their disease... or there is the more common situation where the doctor simply tell them to stay away from gluten and Good Luck. I hear about it constantly, both here and in my day-to-day life.

The misinformation about Celiac abounds. I can't stress that enough. Just a couple months ago, I met a woman in the one regular grocery store near me that sells a few Bob's Red Mill products. We happened to both be checking out at the same time, and the cashier saw that both myself and this other woman had gluten-free items, and asked about it.

I explained the bare bones of the diet, and the cashier asked if Celiac was hereditary. Before I could respond, the woman behind me (who was pitifully thin, and not very healthy-looking at all) piped up and said, "First you have to catch it and be infected. Then it changes your DNA and it becomes hereditary." I was so appalled... I think my jaw actually hit the floor. (Could she have been talking about Tropical Sprue? I have no idea, I know little about that...)

Celiac is still not even close to being something that the public is aware of... there's no "common knowledge" about Celiac, even among Celiacs themselves. That's what makes a product that's marketed like that dangerous.

One other thing I wanted to mention....

Rachel, you mentioned that there are many more non-Celiac gluten-intolerants than Celiacs. That's actually very debatable... and rests on the assumption that standard Celiac testing is accurate and reliable- which many people believe are not.

[Ridgewalker]

PS- Unclezack,

Thanks for the suggestion for heartburn, but I am actually on a low-sodium diet. Yes, the heartburn is agony... it actually feels like my esophagus is trying to crawl right up throat.

[Unclezack]

PS- Unclezack,

Thanks for the suggestion for heartburn, but I am actually on a low-sodium diet. Yes, the heartburn is agony... it actually feels like my esophagus is trying to crawl right up throat.

O.K. I know a lot of people are on a low sodium diet, so try the other option of the carbonated water with a slice on lime. At this time, I have no issues with sodium, so it is more convenient for me to carry a 1 oz bottle of sodium bicarbonate around than to pack around a bottle of Perrier and a lime. This type of heartburn can hit me at any time, not just after meals.

[GFinDC]

I haven't read this whole thread. But I will when I have time. I just wanted to check in and share my thinking on Glutenease. I am not an expert on enzymes.

Anyhow, my understanding is a claim for Glutenease is the ability to break down gluten into smaller chunks. This sounds like it might be a good thing. But, is it? There are no tests to show that the smaller chunks of gluten protein are not passing through a celiac's intestinal walls same as the larger molecules do. And if they are, is this as dangerous as the larger gluten protein molecules, less dangerous, or more? Are lots of small bits of something less bad than fewer larger bits? I don't know. It would be great if a medical institution would do some tests on this products claims and let us all know.

[aprilh]

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??

Nope - none of my dr's ever recommended probiotics for me (except my naturopath of course). They only recommended antibiotics which started the decline of my health.

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.

Thank you for these links Rachel. I will forward on to my friend whose child is dealing with some of these issues. I wanted to talk to her about Phenols but not being as educated on the subject as you are, I didn't feel I could explain correctly. Hopefully, she can look at these videos and get somewhere.

[Unclezack]

Unclezack:

You are drawing conclusions about the study that are false and misleading. The study of AT-1001 is ongoing, and it is not yet known whether that drug will ever get FDA approval. The findings of their Phase 2A clinical trial were not very positive (at least that is my interpretation), which led them to have to do a phase 2B study. More about this can be found at:

https://www.celiac.com/articles/21592/1/AT-...llet/Page1.html

Additionally, the enzymes in Glutenease are not the same as what is being studied in AT-1001, so it is a false analogy--AT-1001 has nothing to do with Glutenease. Additionally even if they do get FDA approval AT-1001 is not meant to allow people to eat gluten again--it is only meant to counter minute amounts of cross-contamination, and it is still unknown if it will even do that.

In contrast, Glutenease is a totally different product that has never been studied. Any claims that it can do anything are based on pur anecdotal evidence, and this sort of thing can be very dangerous, especially to those who must be on a gluten-free diet for life but really don't want to be (uh, how many people is that?), and these people might be looking for any excuse to eat gluten again--like taking a pill called "Glutenease."

I predict that at some point in the not to distant future the makers of Glutanese will be sued by people who have been harmed by their claims (yes, even the name of this product can be construed by many to be a health claim), so I hope they have good insurance.

Take care,

Scott

Scott,

Either I sent the wrong link or they have updated the website. Sorry for any confusion if it was my error.

Anyway, the article that was intended to be linked was about AT-1001, but it told about how hopeful the researchers were that a person would be able to take three pills a day and safely eat 25 grams of glutenous food a day, approximately the equevilant of one slice of bread. My point was mainly the comments below which were many. Many of them said things such as "Oh good, now I can eat pizza again." My point wasn't that the article was misleading, as it clearly stated "no more than 25 grams of glutenous foods", but people still seemed to be getting the wrong impression. I was only trying to point out that people who who have gluten issues are ready to jump on this and aren't realizing that it won't give them back the ability to eat as much gluten as they want to eat. Are they more apt to take this pill because (if) it is FDA approved they will feel it is a cure for an incurable (at least for now) disease? I don't know, but that was the impression I got from the comments.

Thanks for updating me on the progress of the research.

Jack

[aprilh]

Wow! I am bumfuzzled at this thread!

I just read it from beginning to end and am in complete disbelief!

I just wanted to say that I agree 100% with Rachel.

I also think that anyone out there still experiencing major reactions to gluten due to cc could still have underlying issues that they have not dealt with.

Hundreds of Enzymes are manufactured by the body for many many different uses - including digestion, but not limited to digestion. If you are someone who has had chronic illness for a long period or even a short period, it would be safe to say that your body's stores of enzymes have been depleted and you might find supplementation useful.

Enzymes can be found in many raw foods, but the western diet is so heavily cooked, starchy, and high in animal proteins that this can weigh down digestion and deplete enzyme stores. This can have many different outcomes for people. For me I had extreme bloatedness after meals and pain in the digestive tract. This led to a backup in the liver and then I started having pains in my liver. Digestive enzymes have helped solve this problem for me.

I have had great results from enzymes and probiotics and will always have them on hand. There are enzymes such as proteases that help reduce inflammation.

It is of my opinion that anyone with chronic illness should supplement with enzymes because chronic stress and illness reduce the enzymes that our body normally produce. I am not specifically speaking of Glutenease in this regard.

I have had leaky gut and major reactions to gluten, corn, soy, and dairy at least. My leaky gut was caused by a bad candida overgrowth that was caused by over prescribed antibiotics and a small exposure to mold. This led to a build up of metals in toxins in my body thereby causing chemical sensitivities.

I have worked for 2 years now of healing leaky gut, detoxing metals, improving digestion, and improving liver function.

I have never been tested for celiac disease and probably never will be.

It is also my opinion that gluten and dairy are one of the hardest foods for even healthy people to digest. It is not needed to stay healthy and in a lot of cases we would be better off avoiding it. The western diet is FULL of both (and corn too, which is a whole other debate).

Never in the statements that I read did it sound like anyone was saying for celiacs to "eat gluten - take glutenease - you'll be okay". I think people come to this board, at least for me, for a place to come and see what works for others. If you read about something that worked for someone else, you research it, figure out if its something you should try. Ask your doctor, if you doctor is one that might be informed about anything OTHER than prescribing drugs that drug companies make a fortune off of (why isn't that a HOT topic?).

I don't want to be "protected" by someone not giving their opinion on a product based on their own trial and error because someone else, who decides to not educate themselves, might go out and ingest gluten based on a claim by a post....

I think everyone should be able to give their opinions on their life experience and not be hassled for it.

Just my 2 cents.....

[Rachel--24]

I There are two prevailing scenarios when a person is dx'd with Celiac. Either their doctor explains and teaches the patient about their disease... or there is the more common situation where the doctor simply tell them to stay away from gluten and Good Luck. I hear about it constantly, both here and in my day-to-day life.

On the other hand...there are two prevailing scenarios following the diagnosis. In one scenario the newly diagnosed Celiac does what every Celiac here has done....which is to learn about their disease. Those people are most likley not going to go out and try to find an excuse to eat gluten.

In the other scenario the newly diagnosed Celiac makes little or no attempt to learn what the diagnosis means with regards to keeping themselves healthy....and they go about their life making little or no changes.....until they are extremely ill.

We all know that many of these doctor's are NOT very knowledgeable...and they also routinely make inaccurate statements such as "Its ok to still eat a "little" bit of gluten here and there"....or "You dont need to be eating gluten prior to teting for Celiac Disease."...or "You cant have Celiac unless you have diarrhea".

Personally, I'm more concerned about the doctors causing harm to the Celiac patient with their uneducated statements. These people are doctors!! People TRUST doctors.

As we can see here....plenty of people dont trust anything which is not advised by their Dr. or that does not require a prescription.

I still feel the exact same way....if the doctor tells you "You have Celiac....you need to avoid wheat and you'll be fine...have a nice day". Its that person's responsibility to take it a step furthur and learn about this disease....because obviously the doctor cant (or wont) help you beyond the diagnosis.

If the Dr. misinforms the patient....and the patient harms themselves as a result...can that patient then go back and sue their Dr.??

OMG....we would ALL be suing the doctors if we trusted everything they had to say!

Rachel, you mentioned that there are many more non-Celiac gluten-intolerants than Celiacs. That's actually very debatable... and rests on the assumption that standard Celiac testing is accurate and reliable- which many people believe are not.

It also rests on the fact that Celiac is a genetic disease...so yes...the majority of people with gluten intolerance will never develop Celiac Disease. While the actual occurance of Celiac Disease is probably higher than 1% of the population....it is still nowhere near the percentage who have gluten intolerance because of damage to the intestinal lining (from other causes) or because they lack enough enzymes to digest it properly.

Since gluten and dairy are so difficult to digest....its not a far-fetched idea that a large percentage of the population will have some difficulties with digestion related to these foods....but totally unrelated to Celiac Disease.

I think most of us can acknowledge that gluten is very difficult to digest...but an intolerance/sensitivity cant "turn into" Celiac if one is not genetically susceptible.

[Rachel--24]

Wow! I am bumfuzzled at this thread!

I think I have a new favorite word....bumfuzzled.

I think people come to this board, at least for me, for a place to come and see what works for others. If you read about something that worked for someone else, you research it, figure out if its something you should try. Ask your doctor, if you doctor is one that might be informed about anything OTHER than prescribing drugs that drug companies make a fortune off of (why isn't that a HOT topic?).

I don't want to be "protected" by someone not giving their opinion on a product based on their own trial and error because someone else, who decides to not educate themselves, might go out and ingest gluten based on a claim by a post....

I totally agree with you.

Thats exactly what I do...I learn from the experiences of others, I research it to see if its something I might benefit from....and then I discuss it with my doctor (who is knowledgeable about these things).

I dont want my options to be limited because someone else chooses to make irresponsible decisions with regards to their health.

Many of them said things such as "Oh good, now I can eat pizza again." My point wasn't that the article was misleading, as it clearly stated "no more than 25 grams of glutenous foods", but people still seemed to be getting the wrong impression. I was only trying to point out that people who who have gluten issues are ready to jump on this and aren't realizing that it won't give them back the ability to eat as much gluten as they want to eat. Are they more apt to take this pill because (if) it is FDA approved they will feel it is a cure for an incurable (at least for now) disease? I don't know, but that was the impression I got from the comments.

This sounds like an even more dangerous situation to me. I do think that with an FDA approval people are much more likely to see this as a "cure".

[Woolygimp]

We are currently debating in a 4 page thread in the celiac disease - post diagnosis, recovery/treatment(s) forum on www.celiac.com and it's not until the end that Rachel/Zack concedes that this doesn't work on celiacs and that it's only meant for the gluten intolerant.

Yet this ENTIRE THREAD is one big advert on a forum OF CELIACS. Most of the people who read this (most of which are celiacs) aren't going to read the entire thing and some may get the wrong impression.

I'm sorry but this isn't the gluten intolerant forum and I was under the impression the entire time that I was arguing against someone saying this was helpful for people with celiac.

[Rachel--24]

We are currently debating in a 4 page thread in the celiac disease - post diagnosis, recovery/treatment(s) forum on www.celiac.com and it's not until the end that Rachel/Zack concedes that this doesn't work on celiacs and that it's only meant for the gluten intolerant.

Yet this ENTIRE THREAD is one big advert on a forum OF CELIACS.

Excuse me??

I think during the ENTIRE time I've posted in this thread I have stated numerous times that this is not a treatment for Celiac Disease.

Ok....so maybe now I am starting to see everyone's point.

Sometimes people just arent going to "get it".

Also, FYI...the boards arent limited to only those who are Celiac...there are a great deal of people who follow the gluten-free diet without having Celiac Disease. Everyone should be treated with respect...regardless of why they require the diet...and regardless of their personal belief/experience regarding supplements.

[Woolygimp]

I have no problem with shared boards or whatever. It's not very conspicuous that this thread isn't for celiacs, hell I argued for 3+ pages under that assumption.

[psawyer]

I'm sorry but this isn't the gluten intolerant forum and I was under the impression the entire time that I was arguing against someone saying this was helpful for people with celiac.

No, it is a forum to discuss a wide variety of issues in addition to celiac disease and gluten intolerance. Not all of our members are celiacs. We are interested in celiac disease, and in the gluten-free diet. Either one is fair game for discussion.

This thread has been diligently monitored by moderators, including myself. We are aware of your concern, but feel that open discussion is good.

...this ENTIRE THREAD is one big advert...

We believe that there are some suspicious old posts, early in the thread, but that most of the discussion here in the last few days has been from legitimate board members who have been here for some time before becoming involved in this discussion.

A person reading only a few of the posts out of context could get the wrong idea, but anyone reading more than one or two would see that Rachel has been saying all along that she is not a celiac and that this product is not suitable for celiacs.

Edited to add: Rachel and woolygimp both posted while I was composing this.

[Ridgewalker]

I don't want to be "protected" by someone not giving their opinion on a product based on their own trial and error because someone else, who decides to not educate themselves, might go out and ingest gluten based on a claim by a post....

I think everyone should be able to give their opinions on their life experience and not be hassled for it.

Just my 2 cents.....

Again, I don't think it should be taken off the market. Put in a fast and dirty fashion: I think that it's marketed badly and dangerously.

If the Dr. misinforms the patient....and the patient harms themselves as a result...can that patient then go back and sue their Dr.??

Of course they can! It happens every day.

Dietary supplements are also frequently smacked down for false and misleading advertisement. And that's a GOOD thing. It probably doesn't happen enough.

It also rests on the fact that Celiac is a genetic disease...so yes...the majority of people with gluten intolerance will never develop Celiac Disease. While the actual occurance of Celiac Disease is probably higher than 1% of the population....it is still nowhere near the percentage who have gluten intolerance because of damage to the intestinal lining (from other causes) or because they lack enough enzymes to digest it properly.

The fact that Celiac is a genetic disease doesn't really have anything to do with it, when you factor in that about 1/3 of the population has a "Celiac gene." (I put that in quotes because there's also international debate about how many different genes can predispose a person to Celiac. There are a handful of others, besides the two that are accepted in the US, that are acknowledged on other countries.)

Just looking at the numbers, the 1/3 of the population who carries a gene can easily cover ALL people who are gluten-intolerant. Now before anyone's feathers get ruffled- I am NOT saying that everyone who is gluten intolerant has Celiac. I am quite aware that there are other conditions that can cause the intolerance. I'm simply making the point that the fact that Celiac is genetic in no way proves the assumption that "most" gluten intolerants do not have Celiac.

I believe that most gluten intolerants (not all) do have Celiac, whether it's shown up on standard tests (yet?) or not. That goes back to my belief that the two standard tests (blood panel and biopsy) are both inadequate, and that their "accuracy" is proved by each other- a faulty system.

I put the "yet?" in there because there's no way to know how long a person has had Celiac. They can have negative test results today, and positive ones next year. Whether it's because they don't have Celiac today, or because it's not advanced enough to show up on possibly inadequate tests... there's currently know way to know.

[Scott Adams]

Unclezack:

I've never heard of any study currently being done that made any mention of a specific amount of gluten that they hope their treatment will allow people with celiac disease to eat, so I have no idea where you get this 25 gram amount--but please let us know. Since you seem to be the person whose focus on this board is to defend Glutanese as something that is potentially safe for people with gluten intolerance, you must have facts and evidence to back up your claims--otherwise you will create false hopes in people that have the potential to harm them.

GFinDC you are correct in post #134 here--breaking down gluten into smaller parts is easy and can be done with many kinds of enzymes--actually in brewing beer barley enzymes can do this. The problem is that people with celiac disease have a problem with one of those smaller parts--gliadin, which is a tiny peptide/amino acid sequence within the gluten molecule. Breaking this tiny peptide down is the hard part, and there is nothing on Glutanese's web site that even talks about its ability to break down gliadin--this should be a huge warning and red flag for anyone who reacts to gluten, including anyone with gluten intolerance.

Glutanese buyer beware: If something sounds to good to be true, it usually is. It is up to you to protect your own health, as there are plenty of companies out there who will gladly take your money by making health claims that they can't back up.

Unclezack: If you are one of the owners of Glutanese, and I suspect you are, good luck in court trying to convince a jury that you were not making any claims that Glutanese can allow those with gluten intolerance to eat slices of wheat-crust pizza.

FYI: I blocked Glutanese's Google ads from appearing on this site long ago--you won't see them here or on Celiac.com--I don't want their money because I think they are purposefully misleading people.

Take care,

Scott

Scott,

Either I sent the wrong link or they have updated the website. Sorry for any confusion if it was my error.

Anyway, the article that was intended to be linked was about AT-1001, but it told about how hopeful the researchers were that a person would be able to take three pills a day and safely eat 25 grams of glutenous food a day, approximately the equevilant of one slice of bread. My point was mainly the comments below which were many. Many of them said things such as "Oh good, now I can eat pizza again." My point wasn't that the article was misleading, as it clearly stated "no more than 25 grams of glutenous foods", but people still seemed to be getting the wrong impression. I was only trying to point out that people who who have gluten issues are ready to jump on this and aren't realizing that it won't give them back the ability to eat as much gluten as they want to eat. Are they more apt to take this pill because (if) it is FDA approved they will feel it is a cure for an incurable (at least for now) disease? I don't know, but that was the impression I got from the comments.

Thanks for updating me on the progress of the research.

Jack

[Woolygimp]

Unclezack: If you are one of the owners of Glutanese, and I suspect you are,

Good to know I'm not the only one to think this.

[Lisa]

A good, open, intelligent debate is always interesting here, as long it's done in a courteous and respectful manner...(said the fly on the wall)

[home-based-mom]

Just for the record, I have no connection with GlutenEase whatsoever, other than as a customer. I am not a shill for them or anybody else. I am a retired postal supervisor with a part time job at a mom and pop store down the street that has nothing whatsoever to do with food or health. As I said somewhere back there in the last 10 pages, I use GlutenEase because I feel better when I take it than I do when I don't take it. Period.

That being said, I still don't think it's right to bash a product because some people choose to use it irresponsibly. People can - and do - choose to use almost any product irresponsibly. They smoke. They drink too much alcohol. They drive too fast. They even drag race down city streets in the middle of the night. They gamble away the rent money on lotto tickets. They bet at the race track based on the color of the jockey's silks. They vote for the cutest candidate - never mind how the candidate stands on the issues. They eat too much - of everything. They don't exercise enough. They buy hot coffee from McDonald's and then sue McDonald's because the coffee was hot. And on and on it goes ad nauseum.

It is not possible to overestimate how stupid and irresponsible people can choose to be if they have a mind to. Short of a combination of solitary confinement and brain washing, there isn't much that can be done to stop a person who is determined to be irresponsible and stupid from being irresponsible and stupid.

All of which goes to say that if some idiot is going to misuse GlutenEase, some idiot is going to misuse GlutenEase. Removing it from the market will just mean that said idiot will find some other product to misuse.

And furthermore, I believe it was Rachel that pointed out that GlutenEase is marketed to the people who are gluten intolerant because the enzymes GlutenEase contains specifically digest gluten and not some other nutrient. That being the case why would they market themselves any other way?

As far as scientific studies go, the results of the studies are dependent on how well the studies were designed. If the right criteria are not set, if the right questions are not asked, if the right subjects are not chosen, then the results will be worthless. Just as one for instance, in nearly all studies, the control group consists of supposedly healthy people who meet certain other criteria. How do they determine who is "healthy?" Do they screen them for celiac? Using blood tests that are 30% false negative and biopsy that can best be described as hit and miss? Silent celiacs in the control group could skew the results, dontcha think?

Lastly, btw, no one needs to post "But Sandi what do you really think?" cuz I think I told ya!

[TrillumHunter]

Three pills a day to eat one stinking slice of bread?! You gotta be pulling my leg! Who would get worked up over that? I really would rather see the research focus on better diagnosing.

[Ridgewalker]

And furthermore, I believe it was Rachel that pointed out that GlutenEase is marketed to the people who are gluten intolerant because the enzymes GlutenEase contains specifically digest gluten and not some other nutrient. That being the case why would they market themselves any other way?

The following quotes are taken directly from Enzymedica's (maker of GlutenEase) website. Here's the link again for easy reference: Open Original Shared Link

Near the top of the page, you see the CYA statement:

This new formula supports people suffering with gluten or casein intolerance. GlutenEase is not formulated to prevent celiac symptoms.

Continue reading, for Enzymedica's explanation of the "cause" of gluten intolerance:

For many individuals who consume wheat or dairy products, the particular proteins gluten and/or casein are difficult to digest and can lead to intestinal inflammation, malabsorption and a number of disorders including Leaky Gut or other syndromes.

Note that this paragraph gives no explanation of cause other than the proteins being difficult to digest. Not offensive in and of itself, but I just wanted to be clear.

Next paragraph, still under "Cause of Gluten Intolerance."

Gluten exhibits a unique amino acid sequence which creates inflammation and a flattening of the villi of our intestinal tract. The villi provide the intestine with the ability to absorb nutrients from the foods we eat, thus damaged villi can lead to responses such as malabsorption, nutrient deficiencies or other digestive disorders.

They're claiming that they're describing non-Celiac gluten intolerance, when in fact they're describing Celiac Disease. Confusing, at best... it's actually outright misleading.

This is not splitting hairs, folks. This is false and misleading advertisement. Enzymedica claims that GlutenEase is not formulated for Celiacs, and then turns right around and describes Celiac Disease as the condition they do aim for.

This is wrong.