Re: Penny (a little long/technical)

[Guest guest]

Penny,

Welcome, glad your family is here. I have two PDD/SID boys, 9 and 7,

as well as myself. Our story is in the Files section under D.

It sounds as though you have been doing many therapies with your son

for several years. Your experience will be very helpful.

I can understand your diet frustration SO MUCH. The diet is very

helpful for those that need it. The problem is that the way most

foods are made these days in our society, it is just really difficult

to implement. And then if you have to eliminate soy….then corn….then

phenols….

When I hear of people being intolerant to almost everything, it

sounds to me that there is a deeper issue to be dealt with besides

eliminating foods. It seems as soon as you eliminate one food, your

body starts becoming intolerant of something else. I have seen

several times on the allergy sites that allergies to fish are very

high among Scandinavians, and rice allergy is high among Japanese.

Also, there are studies showing that up to 60% of food

allergies/intolerances are caused by food particles being too big

(macro-molecules is what they were called) as they passed through the

gut and/or got absorbed into the bloodstream.

Using digestive enzymes made more sense to me because of this. It

deals with the cause at a more basic level.

Casein is our most dominant trigger. We get major migraines within

hours. We have been using Peptizyde regularly with gluten/casein food

for 9 weeks now with no regression, no reaction. We feel so much

better. I have two happy, happy boys as well as feeling good myself.

We added Zyme Prime 7 weeks ago. We each take one of each with every

meal, and one Pep if a snack has casein/gluten/protein in it and one

Zyme Prime if it doesn't. We each take about 7-9 capsules/day. I

decided to go ahead and give extra capsules after reading about the

many, many overall health benefits of enzymes. To balance the

picture, we only take about 5 supplements instead of the handfuls

each day, because the nutrients come from our food and enzymes

increase nutrient absorption. I can send you a bunch of links if you

want. I have posted several on the board in the past.

We did not do any tests. I wanted to at first, but after reading many

posts about the test not accurately reflecting the responses by their

kids, or a high casein reading after being GFCF for a year, I decided

to just do it and save the money. We did improve right away on the

GFCF diet. When the enzymes became available I switched right away to

enzymes with gluten/casein food – we were not adapting well at all to

the GF part. It was pitiful – and I wasted a lot of money trying all

these different flours and food.

I wouldn't recommend taking him off the diet until you are

comfortable with it. No point in trading one stress for another. Just

try the enzymes slowly as others suggested for a week or so to let

his body adjust. What I did was try casein first because that was our

major offender – like cheese on a sandwich. Then it was a glass of

milk, then an ice cream, then yogurt. Since we were not reacting, I

went back to our regular diet with enzymes all the time. Since my

boys are in school and to friends' houses and such, it was hard to

keep depriving them of everything. The food issue was making

socializing so much harder and worse than before. I just didn't see

as we were accomplishing much over all. And with the possibility of

having to remove more foods….it was a nightmare in progress. Other

people didn't seem to mind it much and adapted quite easily. Just my

experience.

Here is some information on the mechanics of how the enzymes work.

This is the stuff that made me so comfortable with the idea – that I

was accomplishing the same goal as the GFCF diet without having to

remove foods, and was getting a bit more peptide breakdown at the

same time. It also explains why I personally chose to try Peptizyde.

---------- technical part

Allergies and most intolerances are due to a reaction to a food

protein If the protein is thoroughly chopped up by the protease, then

the protein becomes less allergenic.

Normally, our intestinal tract cells are loaded with different

peptidase enzymes to handle the huge number of different peptides

that result from pancreatic proteases breaking down food protein.

Casomorphin is difficult to break down due to the high number of

proline amino acids in its structure. A couple of peptidases, such as

dipeptidyl peptidase IV (dpp IV) prefer to break apart peptide bonds

in which proline contributes, and thus can neutralize the effect of

casomorphin. If this DPP IV activity is low, as it appears to be in

some individuals, then more casomorphin escapes break down and can

enter the bloodstream. Heavy metals have been shown as one cause of

suppressing digestive enzyme activity.

The thinking is that if one can take a supplement that contains a

stable, active form of DPP IV, then this activity could substitute

for the missing intestinal DPP IV activity.

Digestive enzymes are thought to be helpful in some children with

autism. Based on work by several people, including Karl Reichelt, it

has been demonstrated that our own pancreatic enzymes (trypsin,

chymotrypsin, elastase, and to a lesser extent, the stomach protease

pepsin) can hydrolyse (cut, cleave, degrade) the proteins casein and

gluten (found in dairy and wheat) in a precise manner as to produce

small peptides of about 6 to 10 amino acids long called exorphins

(casomorphin, gluteomorphin). These peptides are bio-active, meaning

that they interact with opiate receptors (proteins on the surface

membrane of cells in our bodies that mediate outside signals to

inside the cell). In most people, this is harmless; to some kids with

autism, it causes things like stimming, non-verbalization, lethargy

or aggression, non-socializing, etc. The point of the diet is to

eliminate casein/gluten so that these peptides are not produced.

Enzymes are thought to accomplish similar results, but in a different

way. If you disturb the precise cutting of casein/gluten, such as by

adding more or different kinds of protease enzymes, then the peptides

aren't produced. The ultimate goal for companies like Houston

Nutraceuticals is to find the appropriate enzyme product and dosing

which will allow some relief from the difficult restrictions of the

GFCF diet. There are only two identified enzymes that can cut

casomorphin into little pieces and make it harmless – one is called

DPP IV. SerenAid and Peptizyde, contain DPP IV, Peptizyde has appx.

50% more than SerenAid. An analysis done by National Enzyme on all

three products showed EnzymAid tested out to have little or no DPP IV

activity. A representative for EnzymAid said it does have some DPP

IV, but now we have conflicting analysis on this point. However, the

manufacturer strongly does not recommend EnzymAid for gluten/casein

food, only for unplanned or unknown contamination.

Also some products are very high in bromelain, which can work to

alter the cleavage of casein/gluten. My boys and I tried a high

protein degrading product from the health food store but it was a

disaster. Probably because it did not specifically contain DPP IV,

not because it was a defective product.

There is the thought that being on the GFCF diet would eliminate the

source of producing casomorphin and gliadomorphin. However,

individuals may still have problems even on the diet and that enzymes

will help break these down so they are harmless. If you eliminate

gluten and casein, you do eliminate a major source of casomorphin and

gluteomorphin. However, other opiate like peptides can be produced

from hemoglobin degradation. Bacteria in the gut can produce similar

peptides, so some of these questionable peptides are produced within

the body itself.

If enough DPP IV is taken and makes it into the gut, then this

peptide will breakdown peptides with the structure X-Pro-X-Pro-X-Pro-

X, which is that of casomorphin, gliadin and other peptides. It

breaks down after each Proline residue. This is probably the best

reason to consistently take a high DPP-IV activity supplement. What

makes Peptizyde different from others is that it contains the highest

amount of the peptidase enzyme containing DPP IV (dipeptidyl

peptidase IV) activity. This should make Peptizyde better in breaking

down any casomorphin/exorphins that may escape into the gut or may be

produced by normal and/or abnormal gut flora. Other products which

contain DPP IV may work but you may need to take many more capsules.

One parent said they took 4 SerenAids/meal or snack and this became

quite expensive.

I see my post has gotten a bit long and technical. Please let me know

if you need something clarified. And keep us updated on what you

decide to do. I think trying Peptizyde would be very helpful to you,

even if just for occasional planned gluten/casein meal or snack. It

sounds like you could use a break. We have been very happy (okay,

ecstatic, really) that we can eat a well-balanced diet with all the

regular food, don't have to worry about food outside of the house,

and are feeling better than ever.

.