Gluten Enzymes - Experience/reviews?

[Leper Messiah]

Biocare glutenzyme and other related products, anyone got any experience with these? Are they helpful, anyone swear by them, or are they a waste of money?

[MelindaLee]

Biocare glutenzyme and other related products, anyone got any experience with these? Are they helpful, anyone swear by them, or are they a waste of money?

I'm not sure what brand my sister had...but, I accidentally got "glutened" when at a family function(by a well meaning relative who thought oatmeal was "safe"). My sister happened to have some of these along, and I tried one. It did help to minimize my symptoms. I would never use them and intentionally eat gluten, but it was nice to not have too much stomach/gi upset since we were away from home for the weekend. As a side note, my usual reaction is a migraine several days later. I did not get the migrain, either.

[Bubba's Mom]

My hubby bought me Gluten Defense capsules when he went to a little health food market near his hotel when he was out of town. I've heard they're a waste of time, but I ate some baked goods made with Bob's Red Mill flour, started feeling ill and took one in desperation. I figured it couldn't hurt?

The amount of gluten in my system had to be very small, but still had me up all night.

I drank a LOT of water to help flush my system too. My gluten effects lasted about 24hours.

Not as bad as my last accidental cc.

I think I'll take them if I find myself eating in a situation where I'm not 100% in control of the food/eating area? I would NEVER take them and think it's OK to eat something I know has gluten in it.

[Katrala]

I asked this question some time ago and the answer I got was pretty much that they can lessen the outward symptoms but do not necessarily (has never been proven to) stop the damage (if you are celiac.)

Based on what was said, I could see them being used by NCGI folks who only have GI symptoms from gluten, etc. Even then only for accidental CC (maybe out of town, etc?)

[CR5442]

I personally wouldn't eat gluten deliberately but I'm sure as it has the gluten protease in it, which is a gluten breaking enzyme (not entirely sure if we produce this naturally though) it could certainly give you a degree of easing of symptoms if you were to get accidentally glutened. One point to note though is that you should take it with the food that you are not sure about. Taking it afterwards would not work. Biocare are a fantastic firm. They have onsite nutritionists who have given me some very sound advise. They may say that this is for emergency use only.

[Skylark]

All of the DPP-IV like based products Gluten Defense are snake oil. Do NOT take them to try to save yourself from gluten because they don't detoxify gluten at all.

Biocare looks to be selling the real deal that Alvine is running clinical trials on. Dr. Chaitan Khosla who they quote on their website is the founder of Alvine. You will not likely find this product in the US because it's patented by Alvine. If it is for sale, it likely is in violation of patent laws. Note that Alvine has not completed the clinical trials so the jury is out on whether EP-B2 is actually effective for celiac.

For the biochemists out there (and if you're been suckered into buying DPP-IV you're probably not) DPP-IV is a highly specific endopeptidase that is involved in glucagon metabolism. It is a very sequence specific endopeptidase and is well-studied because it is in clinical trials for diabetes. Note that it is NOT in any sort of trial for celiac BECAUSE IT DOESN'T WORK ON GLUTEN. The enzymes Alvine has in clinical trials for celiac are different ones and it's a mix, not just one enzyme.

A lot of those products have a mix of various digestive enzymes included. Since celiacs often suffer from some degree of pancreatic insufficiency, even the ineffective DPP-IV products may make you feel better after meals. Any mix of digestive enzymes will work similarly.

[AVR1962]

I have tried a couple different products. They are to be take them just before a meal like you would with lactose pills. For me what it did help was the digestive issues but it did not stop the dizziness that I get from gluten.

[CR5442]

I would call or email the nutritionist at BioCare. Gluten Protease will be engineered specifically to break down the gliandin molecule chains, how far it does that I don't know and this is the key. If it can dissolve the whole strand, then when taken with the meal containing gluten it should help. UK regulations for activity statements on any kind of medicine, herbal or orthodox is really stringent, therefore if it says it helps with gluten digestion, then it will to some degree... what that degree is only the professionals will know. Email BioCare to be sure.

[Skylark]

I would call or email the nutritionist at BioCare. Gluten Protease will be engineered specifically to break down the gliandin molecule chains, how far it does that I don't know and this is the key. If it can dissolve the whole strand, then when taken with the meal containing gluten it should help. UK regulations for activity statements on any kind of medicine, herbal or orthodox is really stringent, therefore if it says it helps with gluten digestion, then it will to some degree... what that degree is only the professionals will know. Email BioCare to be sure.

I AM a professional. I just don't write in technical terms on the board because nobody would understand me. I saw a talk on that enzyme not too long ago. In a test tube, that enzyme breaks down gluten into what should be safe components. It's slow enough that I'm skeptical that it will help all celiacs. It takes a few hours to work, which is long enough for some of us to react. Alvine is doing the clinical trials and there is no way Biocare could do human research without violating Alvine's international patents. If you want to know what happens when a human takes the enzyme, you will have to wait for the clinical trial results. Even after the initial clinical trials we won't know for sure whether it works on ALL meals.

[CR5442]

I AM a professional. I just don't write in technical terms on the board because nobody would understand me. I saw a talk on that enzyme not too long ago. In a test tube, that enzyme breaks down gluten into what should be safe components. It's slow enough that I'm skeptical that it will help all celiacs. It takes a few hours to work, which is long enough for some of us to react. Alvine is doing the clinical trials and there is no way Biocare could do human research without violating Alvine's international patents. If you want to know what happens when a human takes the enzyme, you will have to wait for the clinical trial results. Even after the initial clinical trials we won't know for sure whether it works on ALL meals.

Hi Skylark, I didn't know that you were a professional, I do apologise. I only really meant that they should speak to the people who produce this product so there is no guess work. I spoke to my nutritionist today and he said to not take it as a means to eat gluten but said it is likely that it decreases symptoms for example if you were to eat something that might have been cross contaminated or contain small amounts of hidden gluten. I absolutely did not intend to offend you. Please do not take my previous comment as something aimed at you.

[Skylark]

No worries and no offense taken. I have rather a lot of scientific training, and I attend talks on celiac whenever I can, plus stay very abreast of the literature. Maybe I should change my nym to Dr. Sklyark.

The people who make this product are guessing, based on promising animal studies. For the third time, Alvine is in the middle of doing the human studies and it is patent violation for someone else to try. All the detailed studies are in rats and monkeys. Rats digest differently, so you really can't jump from rat to human. The gluten-sensitive monkeys ate gluten without symptoms but their agti-gliadin and anti-TTG antibodies increased. It's not clear what the antibodies mean at all.

[Leper Messiah]

Skylark - can I just check, apologies if I've not read your original post right but are you saying the BioCare Glutenzyme product is part of the snake oil class or part of the type that Alvine are running trials on?

Your post is very useful, I was hoping to find someone who has undertaken detailed analysis of this.

Can I ask your thoughts on something else that I wondered about - I often get CC'd from my flat-mate and always thought in this day and age surely there must be something out there, i.e. a spray or similar, that you can use in your kitchen that can dissolve/break down any gluten in your kitchen (handles, surfaces etc). My reasoning is that surely products outwith the body are much easier to make than those that have to work inside (i.e. these enzyme tabs).

Is this possible from a chemical point of view because it seems (I am accountant by trade so don't have the knowledge yet to back this up) that the gluten protein or whatever it is that we react to doesn't have a half-life or that if it does it's incredibly long relatively speaking. If it went away after an hour, few hours whatever then the risk of me getting CC'd wouldn't be an issue.

[Skylark]

Sorry to be confusing. I went on a bit of a rant. The BioCare product looks to be the kind of enzyme Alvine is running clinical trials on. It might be helpful!

You are correct that gluten is slow to break down. The bit that causes trouble is a very sturdy smallish fragment too, so even if it the wheat breaks down a little it's still a problem. Proteins are very chemically resistant but gluten is soluble in 70%-90% alcohol. Soap or detergent and a good scrub also usually does the trick to de-gluten things. If you're too sensitive/your normal kitchen cleaner isn't working, get some rubbing alcohol or surgical spirit from the drug store and try using that. (Be sure to dilute 99% alcohol a bit with water if that's what you find.) You will need to wipe off the gluten/alcohol mix well since the alcohol will dissolve but not break down the gluten.

You could talk to BioCare and see whether they think their enzyme would be active if you broke a capsule open, dissolved it in a little water, and sprayed it on the counter. Enzymes can be a little picky about pH and salt but this one looks to be pretty sturdy. I think the alcohol is probably cheaper and easier to try though.

[CR5442]

No worries and no offense taken. I have rather a lot of scientific training, and I attend talks on celiac whenever I can, plus stay very abreast of the literature. Maybe I should change my nym to Dr. Sklyark.

The people who make this product are guessing, based on promising animal studies. For the third time, Alvine is in the middle of doing the human studies and it is patent violation for someone else to try. All the detailed studies are in rats and monkeys. Rats digest differently, so you really can't jump from rat to human. The gluten-sensitive monkeys ate gluten without symptoms but their agti-gliadin and anti-TTG antibodies increased. It's not clear what the antibodies mean at all.

I understand what you are saying Skylark.

[CR5442]

I just took a look at what BioCare are using. It is Protease1, which seems to be available to a number of companies producing digestive enzyme type products. Alvin are making a combination enzyme which sounds nothing like something as simple as Protease1. Open Original Shared Link so we can all have a read. Sure that BioCare aren't in violation of patent. Or I could be wrong!

[Leper Messiah]

Well I think the point is that BioCare are a UK company and therefore not subject to Alvin's patent (I think?).

I keep getting glutened even with me being very careful so this is fuelling my interest into this. Breaking down and making safe would make a huge difference to my life in terms of managing this awful disease and no doubt many others too.

Skylark - sorry I keep bugging you but I'm very interested in this topic. I will email BioCare and post any useful replies but I have another query on your last post. The alcohol/surgical spirit suggestion...slightly confused...you say it will dissolve but not break down the gluten protein so what is the net effect in layman terms...i.e. is this pretty much the same risk for me of getting glutened as it was had I not wiped it with the alcohol mix or does this reduce it a bit but not completely, hence you're pointer to make sure it's wiped off properly? I'm unclear of the difference between dissolving and breaking down the protein. Again apologies if this is a bit of a stupid question, I'm desperately trying to refresh myself of basic chemistry.

[Skylark]

Dissolving something means to get it mixed with liquid. For example, honey dissolves in water. As I'm sure you know, you can't clean up spilled honey by spraying water on it, walking away, and letting the water dry. You have to use some water (maybe on a damp rag) to dissolve the honey and then wipe it off the counter. The honey isn't gone or broken down in any way - it just dissolved into the water so you could get it off the counter more easily. Then you rinse it off your sponge or rag and down the drain. Same with gluten and cleaners/alcohol. If you spray a kitchen cleaner or alcohol on the counter and you only use a tiny bit or don't wipe up really well the gluten didn't go anywhere and it could still CC you.

Breaking down gluten to make it safe (as opposed to dissolving it and wiping it away like honey and water) is very chemically difficult. Anything that could break down gluten would also seriously damage your skin and possibly your counter. Enzymes are special in that they can break down proteins without extreme acid or heat, but not many work on gluten. There are no commercial cleaners or cleaning enzymes that would do what you're looking for. As I mentioned, you might be able to mix the BioCare enzyme with water and spray it on your counters but I have no idea how well it would work.

Does that make any more sense? If not ask again and I will keep trying to explain!

[jswog]

Dissolving something means to get it mixed with liquid. For example, honey dissolves in water. As I'm sure you know, you can't clean up spilled honey by spraying water on it, walking away, and letting the water dry. You have to use some water (maybe on a damp rag) to dissolve the honey and then wipe it off the counter. The honey isn't gone or broken down in any way - it just dissolved into the water so you could get it off the counter more easily. Then you rinse it off your sponge or rag and down the drain. Same with gluten and cleaners/alcohol. If you spray a kitchen cleaner or alcohol on the counter and you only use a tiny bit or don't wipe up really well the gluten didn't go anywhere and it could still CC you.

Breaking down gluten to make it safe (as opposed to dissolving it and wiping it away like honey and water) is very chemically difficult. Anything that could break down gluten would also seriously damage your skin and possibly your counter. Enzymes are special in that they can break down proteins without extreme acid or heat, but not many work on gluten. There are no commercial cleaners or cleaning enzymes that would do what you're looking for. As I mentioned, you might be able to mix the BioCare enzyme with water and spray it on your counters but I have no idea how well it would work.

Does that make any more sense? If not ask again and I will keep trying to explain!

Thank you, Skylark! This is GREAT information to file away in the back of my mind.

[Leper Messiah]

Thank you, Skylark! This is GREAT information to file away in the back of my mind.

Agreed, unbelievably helpful. Many thanks Skylark.

This answers my query as to why there isn't a commercial cleaner on the market for us celiacs, albeit depressingly so. I think I am still encouraged enough to still try and look around for something that could help, even if it reduces the risk just an iota. I will start with your idea re breaking a BioCare tab down and mixing with water. I can't remember if I posted that I live with a flatmate who eats tons of gluten, he tries to help me as much as he can but let's be honest, it's difficult for any non-celiac to help/understand so that's my driver on this.

I'll hopefully hear a reply soon to try and make sure this thread doesn't die a death in the mean time.

[YoloGx]

As far as these digestive enzymes that help break down gluten supposedly, I have to report that if taken immediately, they can help, or at least have helped me. They are no profilactic to take all the time however.

It is likely you have already heard this, but just in case you haven't, I will mention this again. Taking charcoal capsules after one has been glutened (esp. from trace sources), really helps cut down the amount of time one experiences symptoms since it absorbs the gluten in the intestines if the charcoal is taken right away.

The unfortunate thing however is that it also absorbs all the good nutrients one needs. However it is good in a pinch, assuming you are not like me and do not have salicylate sensitivity (in which case the charcoal one buys is out since its made with salicylate filled coconut). In my case I have to burn some rice pancakes for my charcoal...

Meanwhile I would strongly advise anyone living with a room mate who eats gluten to have them wise up and be considerate of your needs or one of you needs to leave. Its Either you or him/her. You can't have it both ways. Getting trace CC all the time is a sure ticket to poor health and unhappiness, sorry to say.

Also meanwhile, nattokinase or similar fibronilytic enzymes will help counteract scar tissue in the intestines as well as elsewhere. Of course you don't want to go out and get CC all the time with that either. However it does help heal the villi and thus creates a better intestinal environment with reduced leaky gut problems.

In addition, good live, refrigerated pro-biotics really do help improve gut health and thus overall health too.

Meanwhile I am investigating homeopathics. Currently they have helped decrease my headache symptoms and body aches quite dramatically after being glutened. I have yet to get the ones focused on the gut, but when I do I will let you all know. You have to be off all caffeine and mint products for homeopathics to work by the way...

Bea

[Leper Messiah]

Cheers yolo, I agree with your sentiments re my flatmate however he is normally pretty good but to him it's moving from the country to the city (and all the excitment of being in the town and being able to go out on the piss from our doorstep, you know what I mean) and he is my best mate so I'm wary of pushing him too hard - also I kind of need the rent too. He generally agrees to what I need but if I'm 100% honest, I think I need a gluten free home as no matter how hard I or he tries it's always going to be difficult to completely avoid and it only takes one misplaced gluten protein it seems to set me up for 2 weeks of unbelievable fatigue. I think his plans are to stay here for 2-3 years then move in with his brother so I figure I'll try and cope until then and then once he leaves I should have enough money to go it alone and achieve what I seem to dream about every night.....a gluten free home!!

In terms of the charcoal I've never used that before, I wonder if it would cut my fatigue though, as this has been thus far an immovable constant, it's 2 weeks no matter what I do....hmm maybe worth a shot.

Just to report I've heard back from BioCare, worryingly they don't have a clue. *sigh* I'll do some more research on my own and see where I get to, if anywhere.

In this day and age I'm shocked at how little material there is on this area.

[CR5442]

Just to report I've heard back from BioCare, worryingly they don't have a clue. *sigh* I'll do some more research on my own and see where I get to, if anywhere.

That is worrying!

[Skylark]

Just to report I've heard back from BioCare, worryingly they don't have a clue. *sigh* I'll do some more research on my own and see where I get to, if anywhere.

You mean no clue about using the product for cleaning surfaces? I'm not surprised. We're thinking outside the box so to speak. To keep from getting CC'd you'd pretty much need to be taking the enzymes with every meal you prepare at home. That might get expensive but perhaps it's worth a go?

I'd try cleaning with alcohol, and possibly putting butcher paper on the countertops for a clean, gluten-free surface when you cook. Perhaps your mate will be more careful if he sees you putting down paper?

[YoloGx]

"Cheers yolo, I agree with your sentiments re my flatmate however he is normally pretty good but to him it's moving from the country to the city (and all the excitment of being in the town and being able to go out on the piss from our doorstep, you know what I mean) and he is my best mate so I'm wary of pushing him too hard - also I kind of need the rent too. He generally agrees to what I need but if I'm 100% honest, I think I need a gluten free home as no matter how hard I or he tries it's always going to be difficult to completely avoid and it only takes one misplaced gluten protein it seems to set me up for 2 weeks of unbelievable fatigue. I think his plans are to stay here for 2-3 years then move in with his brother so I figure I'll try and cope until then and then once he leaves I should have enough money to go it alone and achieve what I seem to dream about every night.....a gluten free home!!"

It actually is good to hear your flat-mate is trying to work with you. Sounds like he is a nice guy. Maybe, as he learns more, eventually he can become your advocate?? Barring one of you moving out, or having your room mate go gluten free at least in the flat while you live together, I suggest you create a gluten free area where you can store your food and cook in, and have your flat mate do the same with his stuff. It would be a good idea for instance if you got your own dedicated toaster oven for instance, as well as your own cutting board etc. It would be nice if you or he could get your (or his) own mini fridge too if that is at all possible. And maybe a hot-plate?? You should probably also go through "decontamination" rituals like always washing your hands before putting them to your face or mouth and maybe even washing off plates and silverware, just as a precaution, depending on the situation--or again have your own separate stuff you store separately. Maybe too get your own washable place mats for your table only to be used by you.

Meanwhile I have found this washing my hands all the time to be a life saver in numerous situations, just through the day. If you also have to be extra cautious in your own flat, so be it.

[Leper Messiah]

You mean no clue about using the product for cleaning surfaces? I'm not surprised. We're thinking outside the box so to speak. To keep from getting CC'd you'd pretty much need to be taking the enzymes with every meal you prepare at home. That might get expensive but perhaps it's worth a go?

I'd try cleaning with alcohol, and possibly putting butcher paper on the countertops for a clean, gluten-free surface when you cook. Perhaps your mate will be more careful if he sees you putting down paper?

Yeah exact reply here:-

Thank you for your email.

I`m sorry but I cant really comment on your question. It is not something I have studied or used. I have no idea if it works on surfaces that may have traces of gluten on them. sorry

I agree we are thinking outside the box but surely not by a far stretch of the imagination, essentially what I was asking them was specific to their product but they would have surely known or had an opinion to whether our suggestion might work. That's all I was looking for, I mean technically if it did surely it's a massive product given the increasing market for celiacs and non-celiac-gluten-intolerants. Sorry just a bit peeved at their lazy response.

I'm not yet entirely convinced taking the enzymes will help with my reaction, hence the investigation to stopping gluten before it enters my mouth. It appears, I've yet to try them of course and will reserve complete judgement until then, that it only reduces the intensity and length of the attack for folks affected by bowel issues, diarrhoea / sore stomach etc. I've not heard of them reducing the length of time for those who have a 2 week fatigue instead nor reducing the severity of the fatigue. Which kind of makes sense in that it takes time for the enzymes to break down the gluten but since it's been ingested this is largely irrelevant except for those affected by immediate GI issues. We shall see though. I don't have any major GI symptoms when I eat gluten, perhaps slightly so but it's the fatigue which really defines my reaction.

Hmm butcher paper could be a shout, will look into that.