Re: OT: Questions about Enzymes

[Guest guest]

I think I did not mis-speak. I said at the beginning " but this is

what I have heard from others. " I am not guilty of " suggesting

reported ineffectiveness of the EnZymAid formulation, " I outright

said this is what I have heard from being in conversation with

others, and that effectiveness can vary by individual. I also said

EnzymAid was a good product and several parents have said they saw no

reaction [under certain circumstances](but this part was omitted). I

also gave suggestions for getting good results, but this was also

overlooked.

I do correct one thing which wasn't quite correct and I found out

early this morning. I thought EnzymAid was a general all-pupose

enzyme product, but it is a protease product. It has been used

successfully with GFCF food. The study mentioned sounds similar in

scope and results to the one done previously with SerenAid - the

review and data are at www.serenaid.com. I asked Ilene to answer some

questions concerning the parameters of the study when she posted

these numbers earlier on another board and was told they declined to

talk about it. So I do not know about the details of this particular

study.

The poster asked specifically about eating bread, which the current

Kirkman site and Ilene Buchholz's post both support that EnzymAid is

not recommended for use with non-GFCF food. And I said it just that

way:

>I would be very hesistant about a piece of bread, though, because it

>is not recommended for this (by the manufacturer).

Respectfully,

.

[Guest guest]

I would just like to support the information given by Ilene Buchholz of

Kirkman Labs regarding the effectiveness of EnzymeAid for infractions

while traveling. We recently completed a 10-day cross-country trip.

When I was in control of his food we didn't use an enzyme. The rest of

the time, when we stopped at restaurants, or when he had food prepared

by grandmom or an aunt, he was given things that were 'supposed to be'

gfcf but were suspect. Then I would slip him a capsule. We didn't have a

single incident of regression on the trip.

(However, yesterday I took him to a restaurant for fries,and forgot the

enzyme, and he was a loony toon within 20 minutes! Needless to say, he

got an EnzymAid as soon as we got home. He's OK today.) I'm not clear

on what's in it, or how it differs from other formulations, but it works

for us.

in FL

>

>

>

> There was a posting yesterday, on this GFCFKids list, asking a question

> about the use of the EnZymAid formulation to counter any infractions in the

> diet when traveling. Another list mate (k.jorn) replied with a detailed

> response suggesting reported ineffectiveness of the EnZymAid formulation,

> despite acknowledging no personal experience with this product.

> Unfortunately the information that was given was misleading and incorrect.

>

> I work in the Professional Division of Kirkman Laboratories and have

> experience with and knowledge about the EnZymAid product. I would like to

> correct the misinformation given regarding the use and/or effectiveness of

> this formulation. Following is a brief description of EnZymAid as well as a

> clarification of Kirkman Laboratories position on the use of the EnZymAid as

> it relates to the gluten-free and casein-free diet.

>

> EnZymAid is a potent proteolytic enzyme with documented DPP-IV activity.

> This enzyme was formulated by Mark Burdnak, Ph.D., N.D. with input from Jon

> Pangborn, Ph.D. (Kirkman Labs Scientific Consultant). EnZymAid is

> specifically designed to digest casein and gluten peptides as well as

> proteins in soy. EnZymAid was part of a Pilot Study, co-sponsored by the

> Autism Research Institute, involving five medical practitioners treating

> children with autism spectrum disorders. The goal of the study was to

> evaluate the clinical response of this formulation, on 13 different

> parameters of function and behavior, in those with autism. Approximately 60%

> of the children participating in study were liberally eating gluten and

> casein containing foods and the remaining 40% were strictly GF/CF.

>

> The results of this 12 week parent judged study (evaluation forms were

> completed every two weeks and submitted to the ARI) indicated that moderate

> to significant improvement was noted in function and behavior of the

> participants. This included both those who were liberally eating gluten and

> casein containing foods as well as those utilizing a strict GF/CF diet.

> Kirkman Labs chose not to publicize or profit from these results and we have

> not positioned this formulation in replacement of a GF/CF diet. Instead we

> made these results available to researchers in autism encouraging additional

> independent testing to confirm these results with rigorous clinical trials

> and laboratory verification. Also a scientific article, inclusive of the

> study design and outcome results, was submitted for publication in a Medical

> Journal which included the following table.

>

>

> SUMMARY OF THE DATABASE:

>

> Following is a table providing the percentage of families that reported a

> moderate, significant and/or great improvement rating in symptoms over a 12

> week time period.

>

>

> WEEK 1-2 WEEK 3-4 WEEK 5-6 WEEK 7-8 WEEK 9-10 WEEK 11-12

> Eye Contact 37% 47% 43% 56% 67% 67%

> Socialization 42% 67% 71% 76% 81% 90%

> Attention 40% 54% 63% 59% 73% 68%

> Mood 36% 52% 57% 60% 55% 59%

> Hyperactivity 31% 31% 50% 75% 75% 80%

> Anxiety/Compulsions 20% 41% 46% 47% 41% 60%

> Stimming 27% 38% 27% 38% 31% 50%

> Comprehension 40% 45% 58% 55% 50% 63%

> Speech/language 27% 41% 53% 47% 38% 44%

> Sound Sensitivity 17% 17% 18% 42% 25% 50%

> Digestion 35% 50% 56% 50% 56% 50%

> Sleep 23% 36% 43% 50% 64% 57%

> Perseveration 33% 38% 44% 50% 39% 53%

>

>

> The observations from this study suggest that EnZymAid can be effectively

> used to provide quite noticeable measures of improvement in function and

> behavior of those children on the autism spectrum (both in those utilizing,

> as well as strictly avoiding, gluten and casein). Despite these results

> Kirkman Labs will not make any claims that these products alleviate, cure or

> prevent any disease or condition in autism. We do not advocate the total

> abandonment of the GF/CF diet, with liberal use of all gluten and dairy

> containing foods in conjunction with enzymes, despite recognizing that this

> is being done quite successively with our formulations.

>

> Kirkman Laboratories supports the position of practitioners and researchers

> who suggest there is no definitive scientific support guaranteeing that

> enzymes completely (100%) breakdown casomorphin and gluteomorphin peptides.

> We do support the use of these enzymes when there are accidental infractions

> or planned exposures to gluten or casein in the diet, as we have had

> confirmation of their effectiveness from countless families.

>

> The suggestion that EnZymAid has not been effective for some that have tried

> it may in part be related to the dosing of this enzyme. Those children in

> the study who were ingesting gluten and casein containing foods utilized far

> higher amounts of the formulation (2 to 4 capsules per meal) than those on a

> strict GF/CF diet (using 1 to 2 capsules with food). Additionally it is

> clear that each child responds differently to the introduction of enzymes.

>

> The response by families to the combined use of EnZymAid and EnZym-Complete

> (a multi-spectrum enzyme formulation) has provided support for undertaking

> further studies evaluating the effectiveness of these enzymes in the health

> and functioning of children with autism.

>

> The position of Kirkman Laboratories remains consistent in supporting the

> use of a GF/CF diet, which has been shown to be a crucial and effective

> measure for many with autism spectrum disorders.

>

> Ilene Buchholz, R.N.

> Kirkman Laboratories

> Professional Division

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 6

[Guest guest]

I printed this out. Thank you. My husband, , is on the

enzymesautism list. We bought EnZymAid and Super Nu-Thera last week

and are eagerly waiting for it in the mail.

I don't intend on eliminating this diet, but contamination no matter

how vigilant we are might happen.

Luster

>

> There was a posting yesterday, on this GFCFKids list, asking a

question

> about the use of the EnZymAid formulation to counter any

infractions in the

> diet when traveling. Another list mate (k.jorn) replied with a

detailed

> response suggesting reported ineffectiveness of the EnZymAid

formulation,

> despite acknowledging no personal experience with this product.

> Unfortunately the information that was given was misleading and

incorrect.

>

> I work in the Professional Division of Kirkman Laboratories and have

> experience with and knowledge about the EnZymAid product. I would

like to

> correct the misinformation given regarding the use and/or

effectiveness of

> this formulation. Following is a brief description of EnZymAid as

well as a

> clarification of Kirkman Laboratories position on the use of the

EnZymAid as

> it relates to the gluten-free and casein-free diet.

>

> EnZymAid is a potent proteolytic enzyme with documented DPP-IV

activity.

> This enzyme was formulated by Mark Burdnak, Ph.D., N.D. with input

from Jon

> Pangborn, Ph.D. (Kirkman Labs Scientific Consultant). EnZymAid is

> specifically designed to digest casein and gluten peptides as well

as

> proteins in soy. EnZymAid was part of a Pilot Study, co-sponsored

by the

> Autism Research Institute, involving five medical practitioners

treating

> children with autism spectrum disorders. The goal of the study was

to

> evaluate the clinical response of this formulation, on 13 different

> parameters of function and behavior, in those with autism.

Approximately 60%

> of the children participating in study were liberally eating gluten

and

> casein containing foods and the remaining 40% were strictly GF/CF.

>

> The results of this 12 week parent judged study (evaluation forms

were

> completed every two weeks and submitted to the ARI) indicated that

moderate

> to significant improvement was noted in function and behavior of the

> participants. This included both those who were liberally eating

gluten and

> casein containing foods as well as those utilizing a strict GF/CF

diet.

> Kirkman Labs chose not to publicize or profit from these results

and we have

> not positioned this formulation in replacement of a GF/CF diet.

Instead we

> made these results available to researchers in autism encouraging

additional

> independent testing to confirm these results with rigorous clinical

trials

> and laboratory verification. Also a scientific article, inclusive

of the

> study design and outcome results, was submitted for publication in

a Medical

> Journal which included the following table.

>

>

> SUMMARY OF THE DATABASE:

>

> Following is a table providing the percentage of families that

reported a

> moderate, significant and/or great improvement rating in symptoms

over a 12

> week time period.

>

>

> WEEK 1-2 WEEK 3-4 WEEK 5-6

WEEK 7-8 WEEK 9-10 WEEK 11-12

> Eye Contact 37% 47% 43%

56% 67% 67%

> Socialization 42% 67% 71%

76% 81% 90%

> Attention 40% 54% 63%

59% 73% 68%

> Mood 36% 52% 57%

60% 55% 59%

> Hyperactivity 31% 31% 50%

75% 75% 80%

> Anxiety/Compulsions 20% 41% 46%

47% 41% 60%

> Stimming 27% 38% 27%

38% 31% 50%

> Comprehension 40% 45% 58%

55% 50% 63%

> Speech/language 27% 41% 53%

47% 38% 44%

> Sound Sensitivity 17% 17% 18%

42% 25% 50%

> Digestion 35% 50% 56%

50% 56% 50%

> Sleep 23% 36% 43%

50% 64% 57%

> Perseveration 33% 38% 44%

50% 39% 53%

>

>

> The observations from this study suggest that EnZymAid can be

effectively

> used to provide quite noticeable measures of improvement in

function and

> behavior of those children on the autism spectrum (both in those

utilizing,

> as well as strictly avoiding, gluten and casein). Despite these

results

> Kirkman Labs will not make any claims that these products

alleviate, cure or

> prevent any disease or condition in autism. We do not advocate the

total

> abandonment of the GF/CF diet, with liberal use of all gluten and

dairy

> containing foods in conjunction with enzymes, despite recognizing

that this

> is being done quite successively with our formulations.

>

> Kirkman Laboratories supports the position of practitioners and

researchers

> who suggest there is no definitive scientific support guaranteeing

that

> enzymes completely (100%) breakdown casomorphin and gluteomorphin

peptides.

> We do support the use of these enzymes when there are accidental

infractions

> or planned exposures to gluten or casein in the diet, as we have had

> confirmation of their effectiveness from countless families.

>

> The suggestion that EnZymAid has not been effective for some that

have tried

> it may in part be related to the dosing of this enzyme. Those

children in

> the study who were ingesting gluten and casein containing foods

utilized far

> higher amounts of the formulation (2 to 4 capsules per meal) than

those on a

> strict GF/CF diet (using 1 to 2 capsules with food). Additionally

it is

> clear that each child responds differently to the introduction of

enzymes.

>

> The response by families to the combined use of EnZymAid and EnZym-

Complete

> (a multi-spectrum enzyme formulation) has provided support for

undertaking

> further studies evaluating the effectiveness of these enzymes in

the health

> and functioning of children with autism.

>

> The position of Kirkman Laboratories remains consistent in

supporting the

> use of a GF/CF diet, which has been shown to be a crucial and

effective

> measure for many with autism spectrum disorders.

>

> Ilene Buchholz, R.N.

> Kirkman Laboratories

> Professional Division

[Guest guest]

I find this discussion so interesting. For one reason, none of the experts

at the DAN conferences said to go off gfcf even when taking enzymes. They

said that this was like taking the antidote and the poison at the same time.

This went for Dr. Panghorn too.

I wonder sometimes if we aren't too optimistic in looking for improvements in

our kid. I hear so many people say that they saw immediate results but the

results they posted are all hard to quantify. Like " less spacy " or " less

stimmy " or " more " eye contact. Can someone even quantify these things? And

then when they challenge the diet with enzymes they notice " no problems " .

Maybe we are not looking for problems because we would like to get off this

merry go round. Maybe it was simply a case of the diet not helping someone,

so when they go off it, there are no differences.

We went on the diet April 1. I know we have had slip ups. I am committed to

the diet for a year. We go see Dr. Amy in August. I do not consider myself

to be a good observer in my child's behavior because I WANT something to

work. So, I wait and see if anyone else tells me he's doing better. The one

item I can say for sure is that I put him on DMG and SNT in January. After

starting these supplements but before starting the diet it hit us that the

self injurious behavior had stopped. Completely. No more head banging, face

slapping or eye gouging. That is all I will admit to as progress since is is

not a decrease but an elimination.

I also wonder if doctors sit around and decide to do autism treatments

because they can make a lot of money off us. I don't want to miss something

that might help but I also don't want to be a fool.

So, I say there is nothing to lose in being gfcf. My child's diet was crap

before he started and it's still crap. Just different crap. He is very

healthy because of his supplements. We use enzymeaid to hopefully catch any

infractions from soaps, pastes, etc. that he may encounter at school that I

don't know about. But, if the inventors tell you that it's NOT a magic pill,

then that's enough for me. We will continue with gfcf until we are sure that

it's not working.

Maureen

[Guest guest]

I know that it sounds unclear when we say that Evan is more 'with' us than

before the diet. But I agree that it is hard to look for these things

ourselves because we so want the changes but even our neighbors have told us

that they see the changes in Evan. Those that have not been around him in

awhile have also noticed the difference. I tried SNT almost 5 years ago and

so no change. Same with DMG. Just recently I tried the TMG and SNT again

and still no change. it all goes back to the trite old saying that what

works for one does not work for the other. I just wish we have more doctors

available that knew more about autism. I think we are lucky just to have a

doctor that will listen to some of the things that we want to try. Our last

doctor said that he had learned enough about autism to know that there was

nothing that could be done for it. That was our last visit to him. I

changed doctors as soon as I got a good recommendation from the Regional

Center and have never regretted it.

Betty

----- Original Message -----

I do not consider myself

> to be a good observer in my child's behavior because I WANT something to

> work. So, I wait and see if anyone else tells me he's doing better. The

one

> item I can say for sure is that I put him on DMG and SNT in January.

After

> starting these supplements but before starting the diet it hit us that the

> self injurious behavior had stopped. Completely. No more head banging,

face

> slapping or eye gouging. That is all I will admit to as progress since is

is

> not a decrease but an elimination.