More info from the survey, Long, but useful

Here is important info on how to take the enzymes, and more info from the survey
(this goes with my other posts in this thread, this is from a survey done on a Yahoo group, of its members, using a type of enzymes for autistm. Everything following this sentence is copied out of the survey in the yahoo group).

The overwhelming majority of people continued to see noticeably positive improvements with Peptizyde and HN-Zyme Prime within the first 3 weeks of use, usually within the first week.

Of the positive results:
1. Many (around 35%) described the level of improvement as very great or immense,
2. Many (around 35%) described the level of improvement as very good or good,
3. Some (around 20%) described the level of improvement as good to okay,
4. Few (around 5%) described the level of improvement as positive overall without any huge immediate gains,

Side Effects and Adjusting to Enzymes
Most parents saw at least one of these reactions. Most all cases were said to be mild, manageable and resolved themselves by the third week.
In the first 4 months, there was some speculation that this may be due to the L-glutamine that was present in the initial formulation of Peptizyde. The current formulation does not contain this ingredient.

General Comments
1. Of those seeing positive results, almost all people who wanted to re-introduce gluten/casein foods with Peptizyde were able to do so (very few exceptions).
4. Although Peptizyde and Zyme Prime helped most people return to eating most foods without problem, it is clear that all people could not return to eating all foods. These enzymes did not help with peanuts or help a person with celiac to return to eating gluten. Zyme Prime helped some with phenols in sensitive individuals. A few people were not able to return to eating casein/gluten with Peptizyde but saw such improvement overall and were able to add back other foods, they consider the enzymes very successful (includes the 3 cases of celiac).
5. The main side effect is hyperness. Now that more is known, the parents were more likely to determine this as either out-of-control, destructive, negative hyperness, OR happy, more aware, positive hyperness.
11. People staying on the enzymes longer continue to see improvements as they go over time. The longer on enzymes, the more foods people tend to re-introduce, including casein and gluten, and the more positive results are seen.
12. Several parents posted that they thought their yeast and bacteria treatments were more effective when using enzymes.

Peptizyde and Zyme Prime are less expensive than most other digestive enzyme products. Several parents previously using different products have posted that they do not need to give as many capsules as before and that the Peptizyde seems to be much more effective than other brands.

How Long Before Seeing Benefits
If positive results are not seen by the 3-4th week, it is recommended to post on the situation and see if others can assist with troubleshooting the problem. Or call the manufacturer for ideas.

Because gluten stays in the system for up to a year, and some parents do not see notable improvements with the GFCF diet until being on it 6-9 months or more, it would be up to the parent’s discretion to use Peptizyde for that amount of time or not.

Enzymes Over Time – 7 successful months
A few times a parent would see regression and it was determined to be caused by a particular food that the person could not tolerate even with enzymes. In particular, peanuts, pumpkin seed, sunflower seeds and other related foods. Another problematic area was the total load of phenolic foods and chemical additives.

The question was posed that if you have been taking these enzyme more than 2 months, would you say that most of the improvements were gained within the 2 month period and then leveled off, or would you say you continued to see noticeable improvement over time. About 11 people responded and all said they continued to see steady improvements over time. Many other people also continued to add more foods and see more improvement over time.

With the exception of those who were celiac, none of the people who saw improvement with Peptizyde and Zyme Prime after the initial adjustment period has reported any type of regression over time due to the enzymes. If anything, more of a slow build-up of more improvement is seen. If the enzymes didn’t work out, that was apparent from the beginning.

Leaky Gut
Based on research at several sites, it was found that the average time for a leaky gut to heal is about 3-6 months, and going up to 12-18 months for severe cases.

enzymes clean out waste, toxins and assist gut flora balance.

Another interesting find is that oats facilitate gut healing. Thus, those consuming oats + enzymes may have faster gut healing than those that don’t.


Conclusions
Improvements are seen whether children are on or not on a restrictive diet. Peptiyzde and Zyme Prime are also successfully being used for planned infractions in addition to a restrictive diet. There are many posts from people successfully getting all the benefits of a restrictive diet, without having to use the special food choices.

Most parents have found Peptizyde and Zyme Prime are very effective in widening their child’s menu. Most children are able to tolerate a wider variety of foods physically, as well as willingly improve their appetite and range of choices. MANY families have been able to return to previous “problematic" foods such as corn, eggs, soy, phenols, etc. Most parents who wanted to return to casein/gluten foods have been able to do so with Peptizyde.





Part 2 – Additional Information on Using Peptizyde and Zyme Prime

Strong proteases such as Peptizyde are known to help with immune system support and pain relief.


4. Those who have test results of foods based on an IgG reaction are likely to see good results with enzymes, because these reactions are usually caused by the body responding to an insufficiently digested protein (the protein is too large and the body sees it as an intruder). Those who react to foods based on an IgE reaction should be more cautious in using enzymes to re-introduce a particular food. These are generally not based on food proteins, although they might be. Also, you may see an improved response or less reaction to an IgE based allergy with enzymes because better digestion enables the body to fight off the invading substance more effectively – a roundabout way of improving. So, the “intolerance/sensitivity” reactions are helped greatly by enzymes, whereas the “true allergy” reactions are only mildly helped, if at all.

5. Those who are known to be sensitive to casein/gluten/soy and/or have leaky gut and want to consume these foods are overwhelmingly able to consume those foods again without reaction with Peptizyde. There are a few people who were not able to do this, as well as those who chose not to do it.

8. Those with a yeast or bacteria overgrowth. Eleven parents reported that their yeast treatment seemed to be much more effective when giving Peptizyde and Zyme Prime at the same time. One theory is that yeast cells have an outer protein coat that is hard for the medicines to penetrate. A protease can break down this coating and allow the medication inside and act more effectively. Also, enzymes degrade the toxins produced by the yeast and carry off waste and dead cells.


. When using the enzymes, know that you may still have to look for certain foods that an individual may react to. Besides peanuts, gluten for celiacs, and phenol load, there have been a couple reported cases of problems with some types of oils. Corn oil can contain sulfite residues, so this may need to be eliminated as well as other sulfites .


Getting Best Results with Enzymes

Timing
Enzymes need to be in solution in the stomach at the same time as the food to work properly. Enzymes are “inactive” until the type of food they act on is present. Then they are activated They are catalysts and are not used up in the process. If we had hours of time for digestion, we could take a little bit of enzymes and they would continue to break down the food all day long. However, digestion in the gut happens for only a limited time. You need to give an amount that can do all the break down of the food in the 60-90 minutes So for best success, take enzymes at the beginning of a meal/snack.

Most parents, about 70%, open the capsules and mix the enzymes with any food or liquid and give at the beginning of the meal. because their child does not readily swallow capsules.

If the enzymes come in a veggie cap these may dissolve slower in the stomach. It is recommended to take a whole capsule 30 minutes before a meal/snack. Gelatin capsules dissolve within 2-4 minutes under stomach conditions.


Dosing Guidelines
Enzymes are dosed by quantity and type of food, not by age or weight.
Most parents do fine with one Peptizyde and one Zyme Prime per meal or snack.

If your child is sensitive to casein/gluten/soy then use the Peptizyde. Zyme Prime is for all other food types.

1. If you are GFCF or pretty close and want to help digestion and make sure nothing hidden, unknown, or contaminated sneaks by, then use 1 capsule of Peptizyde per meal/snack.

2. If someone is all or partial GFCF and is going to indulge in an “infraction” or be at an activity where you are less than confident they won’t get into something, then give 2 capsules of Peptizyde at the start of the totally non-GFCF meal.

3. For someone totally not on the GFCF diet, but is suspected of being sensitive to these foods, and you expect to see improvement comparable to the diet, you will need to do some experimenting with dosing. Be aware that this type of person will probably go through the same type of withdrawal as he/she would on the GFCF diet. You may want to start slow and gradually increase the dosage. Go from 1-3 capsules of Peptizyde/meal. More than that will most likely not make a difference.
4. For someone totally not on the GFCF diet, but is probably not sensitive to casein/gluten/soy, then just give 1 capsule of Peptizyde per meal/snack. For this person, you would not expect any major withdrawal as it is taken for improving overall digestion.

Doing a Food Challenge or Re-introducing Foods
If you are first attempting to "challenge" a food that has been restricted or add back in a previously eliminated food, give small, known quantities of the food to be re-introduced and carefully observe changes over several days up to about 2 weeks because some reactions are cumulative or may not show up after the first day. Example: give one bowl of cereal, not the entire box You would not be able to gage dosing

. If there is any reason to suspect celiac disease (such as a family history, or test result) it is recommended to not attempt to reintroduce gluten because there are no enzymes currently known to assist this, and proteases may even cause a worse reaction.

We have found that Peptizyde and Zyme Prime do not allow all people to eat all foods in all quantities.

1. Particularly Problematic Foods
3. For those wondering that if they see improvement with enzymes, should they even bother with attempting a restrictive diet: When using the enzymes, you may still have to look for certain foods that an individual may react to. Like peanuts, gluten for celiacs, and phenol load, sulfites .

2. Celiac Disease
At this time, Peptizyde does not appear to allow a person with celiac to return to eating gluten. if someone sees regression with gluten + enzymes, particularly strong proteases such as Peptizyde, they are advised to consider celiac as a possibility.

It was found, in general, people with celiac reacted worse when taking gluten + Peptizyde than when consuming small amounts of gluten with no enzymes.

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

3. High Phenolic Foods and Food Chemical additives with Sensitive Individuals
The addition of Zyme Prime, magnesium, and Epsom Salts helps with high phenolic foods, but most people who are very sensitive to phenols still need to limit their intake, even with enzymes. Some people find that they can consume some high phenolic foods with Zyme Prime, but not others.

The take-home message is that Zyme Prime may help some with phenols, but for the very reactive, don’t plan on the enzymes allowing complete relief from reactions. Several mothers found they could give certain phenols with enzymes but not all. Others have found they can give low quantities of phenols, but need to keep track of the total phenol load for the day. There are a few ideas on how to manage this.

a.The digestive enzymes in Peptizyde and Zyme Prime do not work specifically to break down phenols. These compounds are broken down by other metabolic enzymes. There is also known research showing the relationship of the PST (phenyl sulfotransferase) system and people having problems with phenols or salicylates and indicates that there is a fundamental lack of sulfur, This is why supplementing with MSM or Epsom Salts helps some people with phenols. Giving additional molybdenum may also help.

c. Additives, food dyes, preservative and other chemicals. the enzymes may help in the same way they help the processing of phenols – by improving the availability of nutrients needed for the detox mechanism.

4. Reacting to Enzymes Ingredients: Rice bran, Papain, Bromelain, Kiwi


Three people so far have had problems with papain and/or bromelain Two knew this before trying enzymes. Papain and bromelian are cross-listed for reactivity along with kiwi.

...the idea that there are many problematic foods, not just casein and gluten. … a fundamental gut problem, such as leaky gut, metal inhibited digestion, bad gut flora inhibited digestion, or something else, rather than a strict casein/gluten problem.
Reports by many parents also confirm this. It becomes apparent for many parents that after you successfully remove the casein/gluten 100%, your child "becomes" reactive to corn...and then soy... and then... The person becomes reactive to whatever they are eating the most of essentially. Although this is not the case for all, it is for many. when enzymes are taken across the board for ALL foods at ALL times, there is a significant synergistic effect which is greater than when taking enzymes either part-time, or for only certain food groups

Using Peptizyde to Assist with the GFCF Diet
If you do want to do the GFCF diet and use Peptizyde to assist with getting started, here is one recommendation being used by some of the parents, and is the general one given on the board at the moment. Start slowly on enzymes because there are lots of benefits to the gut and you know the peptides will be getting broken down as you learn the diet. Give Peptizyde for at least one week, perhaps two. This will allow you and your child to deal with any withdrawal that may be occurring without the new food issue on top of that. Also, their body can adjust to the increase in food being processed. You will want to make sure the child can tolerate the enzymes themselves as well. After this period, start reducing dairy finding replacements as you go. Then reduce gluten because it is much harder and this will be less frustrating. You can have the benefits of being GFCF with Peptizyde, but giving yourself and your child some time to adapt and not go broke trying to find new menus all at once. Then as you get much better at GFCF, reduce the enzymes until only low key maintenance, and/or as "insurance" for unknowns and contamination.

Frequency of Enzyme Use
Most parents who tried Peptizyde and Zyme Prime just occasionally, or used just one product and then used both products on a regular basis with all foods, are seeing significant improvement when they use enzymes ALL the time with ALL foods, even nonallergenic foods. They report a synergistic effect over just giving the enzymes occasionally, or just using one product.

Probiotics
It is now recommended that, enzymes and probiotics be given at separate times - enzymes at the beginning of the meal and probiotics at the end of the meal. Or give the probiotics at a separate time than the enzymes (at least an hour apart). A few parents have commented that they saw improvement with this.

Other Supplements and Vitamins
Even if certain supplements were beneficial in the beginning, they may begin to be problematic after the introduction of enzymes when more nutrients are obtained from food. Removing or reducing the supplements often remedied the problem.

Cleaning Teeth
It may be advisable to brush the child’s teeth after consuming a gluten/casein/soy food that may leave traces in their mouth or teeth. This hasn’t been directly shown to cause a problem or affect results, but one parent made the observation that some gluten/cake was still in her child’s molars a good while after eating. It is a good practice to implement…especially in the beginning to ensure the person does not swallow the gluten at a much later time, when the enzyme you took isn’t in the stomach anymore.


Side Effects and What to Expect When Starting Enzymes
One researcher explains it this way "when digestion starts to work better, malabsorption decreases, and the food supply to the gut flora is normalized...then the die-off releases toxins and substances that can provoke allergic like symptoms. This includes more frequent bowel movements, increased irritability, increased / decreased appetite, hyperactivity and more compulsive behaviors. Usually these presentations ceased before the third week of testing." So hyperactivity and irritability and withdrawal/allergy symptoms can be indications the enzymes are working and the body is re-adjusting.

1. Hyperactivity: This seems to be a very common side-effect with enzyme use,

1) It may be an acute withdrawal reaction from gluten/casein peptides, even though you have been GFCF for a while. Higher doses of enzymes may be removing the sedative effect of the peptides. You may want to decrease the dose to lessen the symptoms. Hyperness is a very common behavior when kids start the GFCF diet, Supplementing with magnesium is often recommended often for hyperness.

2) Increased Awareness/Sensory input: When there is significant improvement in many areas, there may also be increased stimming, hyperactivity, anxiety and a bit of sound sensitivity. This may be due to increased awareness of surroundings. All of this appears to be very common or standard. Also, realize that as the child becomes more aware, socially and otherwise, he has a lot more sensory input to process and interpret. This can be overwhelming and frustrating. It could be that as a protective behavior, he resorts to the stimming and hyperactivity to try and produce the endogenous opiates, like enkephalins. If that's the case, then maybe sticking with the routine and weathering the storm may work, if it is temporary.

3) Better digestion and overall improvement in health by the enzymes may unmask a nutrient deficiency. A common symptom of magnesium deficiency is hyperactivity. Other supplements known to help with the hyperness are calcium, zinc, folic acid, chromium, and molybdenum.



6) Many parents report that adding Zyme Prime with the Peptizyde has decreased or eliminated the hyperactivity. No one knows really why.

2. Regression: Some parents see signs of "regression" when they begin supplementing with enzymes.
1) This may be due to the enzymes clearing out peptides (the body produces some peptides internally), so you see "withdrawal" symptoms similar to what you might have seen when beginning the GFCF diet.
2) Any of the above reasons given for Hyperactivity (die-off, sensory adjustment, nutrients).

3. Thirst: Many parents notice their child is very thirsty when they start enzymes. The body is metabolizing more food, so more water is needed to process the food. It is most likely a sign that the body is functioning better and absorbing more nutrients. Just give more water.

Mold: the question of molds and enzyme periodically comes up. Fungal enzymes are secreted by the fungi, which are cultivated in large incubators. The enzymes are separated and purified away from the rest of the fungus through a process involving 8 to 12 different protocols. As a result, no part of the fungal body (which is the allergenic part) is included in the enzyme preparation.


Hyperness/Stimming Perspective
This is a perspective on how this hyperactivity, stimming, regression may be related to improvements, and a sign the enzymes are working given by an AS adult.



Possible Reasons for Improvement in Results
A better percentage of successful results were seen in the second group of individuals (109 people) over the first 4 months (151 individuals). This is thought to be attributed to:
1. The new formulation of Peptizyde without l-glutamine
2. People having a better idea of what to expect, and willing to give it the three weeks noted as the adjustment period
4. Suggestions for hyperness including magnesium, sulfur and/or Epsom Salts
5. The timing issue with the capsules (allowing sufficient time for them to dissolve before consuming food)

1. New Peptizyde formulation
The first formulation of Peptizyde contained L-glutamine. There were many reports of excessive hyperness and the l-glutamine was suspected to be contributing to this. Peptizyde was reformulated without the L-glutamine. People using both versions reported as follows:
4 people went from negative to positive results
9 parents reported a significant decrease in their child’s hyperness and said they went from good results to very, very good results, or from good results with excess hyperness to good results and no excess hyperness.
3 people noted no difference between the two formulations.


Most people said that the newer formulation without l-glutamine was much better than the older one - less hyperness, and this probably accounts in part for the increase in positive results in this summary. L-glutamine has excitatory properties - meaning that it stimulates some central nervous system pathways - and this may have caused the excess hyperness. Also, at the recent DAN conference, one of the presenters noted that although l-glutamine is known for assisting the gut to heal and is often recommended for gut improvement, there can be an initial negative response by those with very injured guts. The advice given was to discontinue the l-glutamine and allow the gut to heal more before reintroducing the l-glutamine.




1. for loose stools in the beginning – this is common and should pass in a week
2. for stomachaches – stop proteases for 4-5 days and then resume. Most people have no trouble after that
3. hyperness – very common; try the non-l-glutamine Peptizyde, give Epsom salts, and/or add magnesium to the diet


4. Suggestions for Hyperness


2. Sulfur. Many people are also deficient in sulfur Dr. Waring’s work shows that many AS people are naturally deficient in the sulfur that is needed to process phenolic foods and other chemicals. Hyperness is a common symptom of this need for sulfur. Supplementing with MSM has helped some individuals. Link to file on PST/phenol issue: http://groups.yahoo.com/group/enzymesandautism/files/Related%20Topi...

Epsom salts supplies both magnesium and sulfur. Many parents noting hyperness on enzymes are able to remedy the situation successfully by giving Epsom salts.

4. When Zyme Prime is added in addition to Peptizyde, the level of unacceptable hyperness decreases.


5. Decrease or discontinue supplements. More parents are finding that as they continue on Peptizyde and Zyme Prime enzymes over time, their children need fewer other supplements. Most notably is that the high levels of the B vitamins which many AS children take may not be necessary or needed in quite as high amounts
. Some of the oils such as flax seed oil, fish oil, and borage seed oil have been noted to cause hyperness or aggression as well. In addition, people on the enzymes are finding that they may need a lower dose of enzymes for the same level of health or food after some time of regular use than they did in the beginning (so even the amount of enzymes needed decreases).

5. Timing Issue
By the second summary, it was well established that there are two key factors in using enzymes:
1. The type of enzyme used must be the right one for the type of food consumed (protease for proteins, amylase for starches, etc).
2. Enzymes must be in solution in contact in the stomach at the same time as the food. So you need to allow about 20-30 minutes for a veggie capsule to dissolve in the gut if you swallow the veggie cap. Gel capsules dissolve more rapidly and so they can be swallowed at the beginning of the meal.


Possible Reasons for Seeing No Results
Several cases have been reported which give possible explanations to this outcome.
Case 1: The parent was down to giving her three children under seven foods that did not provoke a negative reaction (not an exaggeration). She started enzymes and found that her children could now eat many foods with enzymes that they could not eat previously. However, they still reacted to some foods even with enzymes. Then she began chelation. After each round, she found that her children could now tolerate more and more foods that they could not previously eat even with enzymes.. However, certain food items still remain problematic, even with enzymes.

Case 2: The parent began regular use of Peptizyde and Zyme Prime. After a couple months, she began chelating and added ALA while continuing with the current enzyme schedule. With the addition of ALA, her son regressed greatly, She determined that the process of chelation had created a yeast overgrowth problem, which is common with chelation. She stopped chelation and worked to address the yeast situation, all the while continuing with enzymes. When the gut overgrowth was successfully treated, her son once again regained all of his previous progress.

Case 3: A parent had her son on Peptizyde and Zyme Prime for several months at a relatively high dose (7-9 capsules/day). It was determined he had a bacteria overgrowth. The consistent use of enzymes plus an aggressive dose of Culturelle probiotics was used and this kept the bacteria problem “manageable.” However, after 4 months of this, the bacteria overgrowth problem was not resolved. Whenever the attempt was made to reduce the enzymes or probiotics to a more regular maintenance dose, the problem was evident. Finally, the bacteria were treated with an antibiotic. After that, a more normal dose of enzymes and probiotics was used successfully and all adverse effects of the bacteria problem did not return.

Case 4-6: Three parents noted that their children showed low or moderate improvement when starting enzymes. They considered this successful and later began chelation. As chelation progressed the children improved more and more.

These cases suggest that giving a normal amount of enzymes (two capsules of each product with a normal sized child’s meal = 4 capsules in all), even when significant improvement is seen initially with enzymes, is not sufficient to overcome other problems such as metal toxicities or severe gut flora overgrowth. It is not known at this time if giving much higher doses of enzymes at each meal will override these effects.