7 Month Peptizyde study

[ives6797]

http://www.geocities.com/ives6797/7-month-Peptizyde-Zyme-Prime-Summary-Report.doc

[Caryn]

Dawn,
Are you using peptizydes? I read the research you supplied and I am very interested in trying it! I emailed representatives at Houston Nutraceuticals http://www.houstonni.com/. I am very interested in their No-Fenol, but the spokesperson said that they have a new product that should be ready in a couple weeks that is called TriEnza. It is a three-in-one product.
I think it could really help Tigger as he has sensitivities to salicylates too, as if the wheat and corn weren't enough!
Let me know what your experience is, or what you've heard.
Thanks,
Caryn

[ives6797]

TriEnza is already out, I have read about people who are using it. I am on the yahoo group, link is in the "links" post and the "new to all this" post... everyone on there uses enzymes (btw, most of them are on the autism spectrum). We have Peptizyde and no-fenol. I never tried the Zyme Prime, which is the third componenet to the TriEnza. Zyme Prime is very popular though. I know people were really excited about the TriEnza rather than using 3 enzymes. I *think* it comes only in capsules (?) and I am using the chewables for my son, though you can open the capsules and put it into his food. It's cheaper too because you use less of the capsules (you need to take more chewables).

Anyway, people have the most success with both diet and enzymes. I'm wondering if maybe it helps clear out peptydes that remain from before the diet?? but really I have no idea.

Then supposedly they are able to add offending foods back in successfully.

eta: yep, TriEnza is available:
http://autismcoach.com/peptizyde_and_hn-zyme_prime.htm

Maybe I will try it sometime, I do like the chewables for convenience but I like the idea of having the ZP and NF combined in it. I just bought 3 bottles of chewable AFP Peptizyde though so probably won't be anytime soon!

[Caryn]

Yes, they told me that they changed the formulation to make it stronger and that the new formulation will be ready next week. I am definitely going to buy it and give it a go. Tigger has problems with salicylates and I still feed them to him in moderation because, well-- the poor kid has got to eat! I really hope they help his digestion overall. I also hope that they can help with accidental gluten/corn ingestion, too.

[ives6797]

aaahhhh, ok hadn't heard that they were changing the formulation.

[Caryn]

I am having my second thoughts, which is a dangerous thing! I am compelled to do research until I am satisfied, and sometimes that makes me jog in circles continuously!

Here is a clip from an article I read about the possible negative side effects of enzymes on full blown celiacs:

Celiac is a very serious condition, which often goes undiagnosed. So if someone sees regression with gluten + enzymes, particularly strong proteases such as Peptizyde, they are advised to consider celiac as a possibility. One mother knew her children reacted to gluten among many, many other foods. She started giving Peptizyde and Zyme Prime and carefully re-introducing foods one at a time and noted the reactions. For a few weeks, her children were doing well with 1 slice of gluten bread once each day. About the third week, her children started to regress and developed a noticeable rash. She withdrew the gluten and compared her children’s rash to those of photos of the type of rash that often accompanies celiac, and concluded that her children were celiac. She has re-introduced many other foods, but remains gluten-free with the enzymes. She considers the enzymes to be very successful overall for her family. Two other mothers saw increased diarrhea with gluten + Peptizyde, but success with all other foods. There is a total of 12 reported similar cases involving those with known celiac or suspected celiac where gluten + strong proteases made the reaction worse than if the proteases were not used.

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

There is a certain structure in the gliadin that the small intestine sees as toxic in celiac individuals. The protease enzymes are not breaking this down in a way so that it does not cause a reaction in celiacs. So, in fact, taking just a protease such as Peptizyde may be just making more of these little peptides (or whatever) available to the small intestine, and perhaps increasing the number of chances to provoke a reaction. There was some research on the www.celiac.com site which proposed this same thing with the use of barley enzymes although it also said this was just a working theory and there was no evidence to back it up. No two celiacs are alike in their dietary tolerances for gluten - some are very sensitive, some can tolerate a little at a time, some can't take oats or spelt or kamut, some can. So if a person suspects celiac, takes Peptizyde and gluten and doesn't do well, that person should avoid gluten under all circumstances.

[ives6797]

Celiac is something different entirely though. Enzymes are not meant for and don't work for people with actual Celiac disease. But it is for the kids with gluten intolerance (not allergy) causing neurological issues... such as Autism, ADHD, Tourette etc.

I suppose if an autistic child also happened to have Celiac disease then they wouldn't take the enzymes because it would not work for them.

The purpose of the enzymes is to break down the particles so there aren't peptides blocking receptor sites in their brain. People with Celiac are a completely different story. For them, their CD has nothing to do with peptides in their brain.

ok I just thought of a good example.... say you are lactose intolorant and take the enzymes for that, Lactaid, or Dairy Ease or whatever... you are taking that for your specific condition, something which a person with a true milk allergy can not do, know what I mean?

[Caryn]

Dawn,
Yes--
The concern is that a child might have undiagnosed celiac. (97% of cases go undiagnosed, presumably). It appears that for the celiac child with tics enzymes are a bad idea. I think a good indicator would be a sudden surge in tics after the start of treatments. In our case we had a lot of gastrointestinal issues prior to the initial onset of tics. All of that has been resolved with the diet. We also have a history of autoimmune issues in the genetic line (but no tourette syndrome), another indicator that undiagnosed celiac may have been present. Celiac and autoimmune diseases go hand in hand.
A biopsy is really the only way to determine for certain that a child is not celiac, and that is so invasive. It also requires long term gluten ingestion. But what I have come to understand is that the enzymes on a gluten free diet for these kids appears to be more harmful than just being gluten free. I don't understand why this is. I think I've read that 90% of the kids on enzymes do great, but 10% do not. That is 1% of the population if you consider that 10% of the total population suffers from ASD, which is about the same as the estimated no# of people that are actually suffering from CD (1 in 133 people).
I may just start with No-Fenol and see how that goes. I certainly hope and pray Tigger is not an undiagnosed celiac, but I just don't know. My grandmother died from what they thought was Parkinson's Disease. She had ataxia for years, vertigo-- both point to possible CD from what I'm reading.
I am just afraid to make Tigger much worse with enzymes.
Caryn

[Caryn]

I was sent the following link from the American Journal of Clinical Nutrition:
http://www.ajcn.org/cgi/content/abstract/87/2/415

It sounds very promising...
So in light of this I thought I would go ahead and order the Trienza for Tigger. I feel that it is worth the risk. I don't know definitively whether or not he has CD or is just extremely sensitive to gluten, but I feel that even if he is celiac, I can at least try these digestive enzymes (which are not the same ones as listed in the study) on a trial basis. I may start them over the holidays when we have some time off of school and can determine what way they are working and whether or not they are beneficial.

I talked with a woman at Houston Nutraceuticals named Cindy who was very knowledgeable and has first hand experience with a corn intolerance (her son), so I am very hopeful that these enzymes will help ease the burden of being gluten and corn-free 100% to alleviate symptoms. We are not changing our diet, but just hopeful that the next time Tigger is accidentally exposed to his allergens he isn't on the toilet with explosive diarrhea or puking.

I will update you all here as time goes on and as we 'experiment' with these enzymes. I would love any first hand advice too, as I am nervous as all get out about this.....
Caryn

[ives6797]

Good luck! I may try that one as well, we don't use Zyme Prime yet, but I'm guessing it can only help.

We use AFP Pep and I have No Fenol but haven't been using it lately... though I should because I noticed red ears on my son today. I am guessing it was from a GF blueberry fruit/cereal bar. Blueberry must be phenol.

just checked davasview and it does say all berries. http://www.danasview.net/phenol.htm

[Caryn]

Dawn,
I just got the shipment today. The info packet says it can be used in lieu of a GFCF diet. I found this claim curious. I wonder if there are many that have abandoned the GFCF diet to use the enzymes? In our case I think that could be very disastrous because the chances of Tigger ingesting gluten and missing a dose would just exasperate his already sensitive GI symptoms. I will try them out this week for one meal and see if there is a reaction. We do have a 90th birthday party next month for my grandmother and it is at a pizza place. I do not plan on letting Tigger eat pizza that day, and I do intend to bring my own noodles, but the enzymes may help with the definite cross-contamination that will probably occur. It is either that or bring him a bag of snacks or stay home. I have plenty of anxiety about this, but this is why I decided to buy the enzymes-- so that I wouldn't have anxiety every time we get together with family!
I will just keep telling myself to breath, breath, breath, relax....
(If he reacts it will be four for four on restaurants and reactions: twice he puked and twice he got diarrhea.)
Caryn

[ives6797]

I would not use enzymes in place of the diet either, at least not now. Ideally, tehy are to be used with the diet, but also that initial study I posted, the 7 month Enzyme study above, does say that after a while, many people were able to eat gluten again (once the gut is healed) without anything negative happening. Of course this is only for neurological manifestations of gluten, not an actual allergy or Celiac.  Good luck! Keep me posted!

[Caryn]

Dawn,
Okay, don't laugh--
My husband and I took the Trienza each and pigged out on burgers and fries from a local place after Tigger went to bed. I know that I am gluten intolerant as I usually get GI symptoms after eating gluten now that I've been GF for 10 mos. I never react as bad as Tigger does.
So dh and I decided that we'd be the guinea pigs to get an idea of how the stuff really works. Well, I have to say that I had no GI symptoms that night. I did have a small bit of flatulence the next day but I did not have any bit of constipation or a loose movement. (Sorry to be graphic, but I know that this is the stuff people really want to know).
One thing I did have that was quite low key is a bit of inflammation in my hands (something that I get with yeast and gluten). Now the burger bun obviously has yeast in it....
So I will email the company to address the issue of yeast and will update you when I get a response. I will try it again with just gluten to see if I can escape any and all GI/inflammatory symptoms.
But honestly, I did not get the usual whiplash that I normally would when I eat gluten/yeast in a meal, so this is promising. But having said that, I am not convinced that this is a magic pill. I think the best route is to keep doing the diet and use the enzymes for times when you are unsure about the food and want to protect yourself from accidental ingestion.
But once the gut is completely healed....
Now that I am curious about. Myself I know I have ongoing issues with candida. I would not be an ideal candidate to test that theory.
One thing I have noticed about Tigger, after almost a year on this diet, he seems to be less and less neurologically reactive than he was before the changes. His reactions seem to be gut related and not so neurological in nature anymore. I wonder if this is a sign that the gut has healed?
Caryn

[Caryn]

I got a response today about the candida question:
Dr. Houston said:

"Candida is a tough beast to kill.  What makes it difficult to get rid of is its protective coat of protein and glycoproteins.  If you can compromise the yeast covering, then it's easier for true anti-fungal drugs to get into the yeast cell and kill it.  TriEnza is high in protease enzymes and enzymes such as glucanase that may have an effect on the yeast cell in the manner described above.  Keep in mind that no hard data exists for any enzyme product as to it being absolutely helpful in combating yeast.  However, enzymes also help the gut environment so that other good bacteria are able to grow and keep yeast at bay."

I suppose the question then, is, what do we do to kill candida that has spread to other parts of the body other than the gut?
Maybe this is why the enzymes don't 'work' for everybody-- or that they 'don't work' for a patient at one stage but then six months or a year later they do? Interesting. Anyway, I have given them to Tigger with cheese and no reaction was noted. I will also give them to him for the family party at the pizza place the first weekend in March (and will probably take them myself) LOL. I will keep you updated.
Dawn, do you give them every day? It is pretty expensive if it is given for every meal. Also, do you give one or two capsules? I know you are not doing Trienza, but our boys are about the same age and size. So far I have only given him one capsule at a time. I am very proud of him-- he swallows it whole and chases it with water.
So far I have not done the gluten test. I am so darn scared.

[ives6797]

Yeah I have heard that yeast can be in the brain, not just the gut. They talk a lot about yeast on the Enzymes and Autism yahoo group. Dana ("danasview") is there and is very knowledgeable. She also has her website, danasview.net

http://www.danasview.net/yeast.htm

Wow, that is great they worked so well for you, and on the first time too.