What actually said about enzymes.

[Guest guest]

Below is what said about enzymes and she and other experts

say that the Enzymes should not be used in place of the diet. I have

found that the enzymes don't work for my daughter.

From: s156@A...

Date: Wed May 9, 2001 12:01 pm

Subject: Re: [GFCFrecipes] New Enzymes-could aid corn issue?

Last weekend I was at a conference (Pontiac, MI) at which Jon

Pangborn, Ph.D.

spoke. Jon was one of the developers of Serenaide enzyme and endorses

its use

(though he believes that Kirkman's EnzymAid is a slightly better

product.)

The point of my posting is this: Dr. Pangborn was one of the enzymes

developers, but he stated unequivocally that the enzyme is not to be

used

INSTEAD OF THE DIET. He said it is an excellent adjunct to the diet

but for

now, there are no enzymes available on the market that will allow you

to go

off the diet.

One other thing--in my experience (we've been doing the diet for

eight years

and I've heard from many thousands of other parents) the extreme

negative

reaction to accidental ingestion of gluten or casein goes away with

time.

Why? I'm not sure, but my guess is that after a while on the diet

(two years?

one?) the gut heals so that the peptides aren't getting to the

bloodstream

and hence having a noticeable neurological effect. [PLEASE NOTE: I'M

NOT

TALKING ABOUT KIDS WITH WHEAT ALLERGIES OR OTHER IMMUNE-SYSTEM

MEDIATED

ALLERGIES. I AM TALKING ABOUT THE (MOSTLY AUTISTIC) CHILDREN WHO HAVE

PROBLEMS WITH THE OPIOID PEPTIDES FOUND IN GLUTEN AND CASEIN.]

When my son was first on the diet, and for the first couple of years,

he had

extreme reactions (esp. to gluten.) Now he doesn't. I still keep him

on the

diet because I remain convinced that if I don't, the same issues will

cause a

re-injury of his gut and we will start all over. I have heard from

several

parents who didn't realize this, and after a few years they went off

the diet

because infractions weren't causing big effects. For the ones I've

heard

from, there were serious regressions but it took months to happen.

For now, the conservative approach (in my opinion) is to use the

enzymes

along with the diet. Some give them with every meal. I use them only

when

someone else has prepared the food but after listening to Dr.

Pangborn I am

considering using Enzymaid with all meals.

The other mistake people make is to not give enough of the capsule.

He

pointed out that this isn't a drug--you don't determine the " dose " by

the

size of the child but rather by how much they eat! If you have a big

child,

with a big appetite (like mine) one cap isn't anywhere near enough.

When I

use it I give three (he weighs aobut 120 lbs.)

I'm not a doctor, but do have a lot of experience and hear from many

others

who write to me at the ANDI email account and P.O. box. I think it is

foolish

to use the enzymes in place of hte diet if the diet is helping. I

hope that

at some point they will come up with a way to fix the enzyme

deficiency that

leads to maldigestion; short of that a pill to digest ALL hte

peptides would

be a blessing. but we are not there yet. When the people who came up

with the

digestive enzymes say so, I am going to believe them.