Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

[Guest guest]

Hi

I'm very interested in this approach. Where can I find out more?

Margaret

[Guest guest]

In a message dated 4/21/2001 10:56:55 AM Eastern Daylight Time, jamm@...

writes:

> :

Plese tell me what the program is . Very curious as I am sure others

are. I have never heard of it. Could you tell us a little more. What is

there E. Mail list?

>

> kelly

>

> Hi,

>

> Well, anyway, I'm glad you found this track and it's working so well for

> you! Hope it works out for some others too if that's what is best for their

> family. The restrictive diets are so hard to live with, even just cutting

> out gluten is hard and that's far easier than when you add in casein and soy

> and so many other things. It is scary to make decisions for our children,

> and it helps to know something works well for others. I had already seen

> lots of testimonials of other families who took their children off the

> restrictive diets and onto this program, or I wouldn't have had the courage

> to try it myself. It's a wonderful group of people to be working with,

> isn't it? Are you on their email list?

>

>

[Guest guest]

I have a comment on all of this. While I still support the diet and believe

that all parents should try it with their child, my son is no longer GFCF.

We were GFCF for over 7 months. I had committed to atleast 6 months. My

son's gluten peptides were very high when we started. I was very strict on

the diet. The only slip-ups--if any--were at school where I had no control.

(They promised that they were very careful.) We saw NO improvements in my

son's behavior in all of that time, and in fact, saw some pretty serious

self-injurious behaviors. Basically, it was a miserable seven months. Why?

I'm not sure. I know many have theorized that perhaps the kids who do poorly

on the diet are actually having reactions to something used to replace the

wheat, like soy. However, I was careful to rotate my flours and milks. I do

have one theory about this and am wondering what you guys think. Dr.

Goldberg doesn't generally recommend the gf part of the diet. But he does

say NO WHOLE WHEAT. Well, the flours we generally use to replace the wheat

are courser, heavier flours than the wheat flour found in plain white bread.

I am wondering if that is why my son reacted so badly. Perhaps his body just

couldn't tolerate that course, heavy flour. I rotated between the bean flour

bread and rice bread. I saw no difference in his behavior with either. What

do you guys think?

Again, I always still recommend the diet to anyone who hasn't tried it yet.

I say anything that can't harm your child should be given a shot. (I DO NOT

BELIEVE FOR ONE MINUTE THAT TAKING YOUR CHILD OFF OF WHEAT COULD HARM A CHILD

IN ANY WAY. IF THAT WERE SO, CELIACS WOULD GET SICKER ONCE THEY BEGIN THE

DIET INSTEAD OF GETTING BETTER. AS LONG AS YOUR CHILD IS STILL GETTING THE

BASIC FOOD GROUPS,MEANING YOU REPLACE THE WHEAT WITH SOME OTHER GRAIN, THEY

WILL BE FINE.)

Thanks,

[Guest guest]

On Fri, 20 Apr 2001 23:28:35 -0700 " Tim & s "

gfcf4taryn@...> Ironically, the long-term

> physiological hazards of GF/CF began to stack up against the present

> neurological hazards of food-based opioids.

>

> So Taryn is now off GF/CF and Cod Liver Oil (they are concerned

> about Vitamin A shutting down the body's natural desire for Vitamin

> A-based foods). > Tim & s

> Parents to Kiera (6, NT) and Taryn (2-1/2, " other " )

>

Tim and , I wish you the best of everything in your new venture

with your daughter and yes I agree every child is different.

PLEASE explain the two statements above to me in a little more detail

cause they caught my eye and I want to learn as much as I can about this

diet I need to know what " the long term physiologicalm hazards of GFCF "

mean and the the statement about Vit A.

Thanks so much. And please respond in simple easy to understand

language. I remember once I asked someone for an explanation on a topic

and I got a response that I needed a dictionary for !!!!!

Again thanks for your post and please explain to me.

on Long Island New York

*

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[Guest guest]

>

> On Fri, 20 Apr 2001 23:28:35 -0700 " Tim & s "

> gfcf4taryn@...> Ironically, the long-term

> > physiological hazards of GF/CF began to stack up against the present

> > neurological hazards of food-based opioids.

and Tim: Could you explain a little more about this statement? I

wish you both the best of luck as you try to find the best situation for

your child! Dawn in Alabama

[Guest guest]

Hi,

We are using the same programs here! My son is celiac though, so we have to

stick to the gluten free, although they do feel that long term it is

possible to even reverse celiac disease. (I have it too, so I think I'll

let them prove it on me first.) My son is not autistic, he would probably

be labeled with sensory integration dysfunction if we had a diagnosis, and

he has been on the neurodevelopmental program for several months and has

just recently started on the electrolytes in his milk or juice and he is so

much calmer and more coordinated. I am on the program too, drinking 48 oz.

of milk a day with no problem and supposedly I'm highly allergic to milk.

In fact, my eczema has disappeared since starting the electrolytes. They

don't always have you drink quite so much milk, but to start I have to

because of years of malnutrition from celiac to make up for. We are also

using KI sequences, don't know if you've been told about that yet.

Well, anyway, I'm glad you found this track and it's working so well for

you! Hope it works out for some others too if that's what is best for their

family. The restrictive diets are so hard to live with, even just cutting

out gluten is hard and that's far easier than when you add in casein and soy

and so many other things. It is scary to make decisions for our children,

and it helps to know something works well for others. I had already seen

lots of testimonials of other families who took their children off the

restrictive diets and onto this program, or I wouldn't have had the courage

to try it myself. It's a wonderful group of people to be working with,

isn't it? Are you on their email list?

in IL

Off GFCF For Good: WARNING! CONTROVERSIAL!

> I want to start by saying that I recognize that all children are

different, and that the only data we have is our own little Taryn. What we

have encountered may be specific to our case.

>

> After 3 months of GFCF, Taryn is now transitioning to a diet that is aimed

at " eating as our grandparents did " , which includes avoiding preserved and

pre-packaged foods. This includes a full glass of cow's milk and plenty of

bread with each meal, and absolutely NO soy products!

>

> We are working with a semi-local organization who take a different

approach to biological issues related to autism. Right now, the options are

two-fold: remove the offending item from the patient's environment, or

introduce a chemical to minimize the patient's reaction to the offending

component. This group adds a third option: isolate the biochemical

deficiency that is responsible for the atypical reaction, and introduce the

appropriate enzymes, electrolytes, and other catalysts necessary to enable

the person to effectively process foods. Their focus is on the entire body

chemistry - both short AND long term. Ironically, the long-term

physiological hazards of GF/CF began to stack up against the present

neurological hazards of food-based opioids.

>

> So Taryn is now off GF/CF and Cod Liver Oil (they are concerned about

Vitamin A shutting down the body's natural desire for Vitamin A-based

foods). As a matter of fact, we have a full sealed, unopened bottle of

Kirkman Labs CLO and jar of Enzym-Aid that we are looking to get rid of.

She ran into a few regressions early on, but made a pretty surprising

rebound in fairly short order. We are continuing to make constant

biochemical adjustments, modifying the diet to optimize appropriate

nutrients and introducing the necessary adjunct catalysts.

>

> At the same time we are working with a neurodevelopmentalist to develop a

set of exercises aimed specifically at developing neurological input

processing functions. This is sort of a hybrid between ABA and sensory

integration.

>

> We have seen such phenomenal progress with everything that Taryn has been

rediagnosed. In January, she was diagnosed as " moderately autistic. " This

past week she was reclassified as " sensory integration deficient with speech

development delay. " Her eye contact is incredibly high, she can't get

enough hugs and cuddles from her mommy and me, she wants to play with her

sister, and she shows incremental development almost daily. Best of all, we

were able to give her real macaroni and cheese for dinner...her favorite

before the GF/CF.

>

> Once again, I want to be sure to reinforce that I know that what I am

posing here flies in the face of most everything on this list. I am forever

grateful to all here who set us along the proper path, because we were able

to prove definitively and conclusively that Taryn's developmental issues

were predominantly based in metabolism.

>

> For many of you, undertaking GF/CF was a leap of faith. I read many

stories in which many here were encountered by cynical - even hostile -

family, friends and cohorts. We have undertaken a similar leap of faith and

have found the payoff worth the risk. Again, it may not be the answer for

others. Selfishly, I am thankful it is at least for Taryn.

>

> If as you read this you find that you would like to know more, we would be

happy to share details. It is not our intention to detract from the mission

of this list, which is to serve parents and guardians who wish to implement

GF-CF as a means of treating their children's autism. We simply want to

share with others the joys of an amazing, almost stunning ascent toward

near-normalcy after such a dizzyingly short period of time.

>

> We will not be lurking around this list much longer. If you would like a

response here, we will be happy to do so. If you would like a personal

response, please contact us at dgstevens@... .

>

> God bless all of you as you shoulder the burden of this most unwelcome

yoke. You are all in our prayers.

>

> Tim & s

> Parents to Kiera (6, NT) and Taryn (2-1/2, " other " )

>

>

>

[Guest guest]

Is there a website that explains more in detail about this approach. I'd be

interested in learning more.

Sharon

julie wrote:

> Hi,

>

> We are using the same programs here! My son is celiac though, so we have to

> stick to the gluten free, although they do feel that long term it is

> possible to even reverse celiac disease. (I have it too, so I think I'll

> let them prove it on me first.) My son is not autistic, he would probably

> be labeled with sensory integration dysfunction if we had a diagnosis, and

> he has been on the neurodevelopmental program for several months and has

> just recently started on the electrolytes in his milk or juice and he is so

> much calmer and more coordinated. I am on the program too, drinking 48 oz.

> of milk a day with no problem and supposedly I'm highly allergic to milk.

> In fact, my eczema has disappeared since starting the electrolytes. They

> don't always have you drink quite so much milk, but to start I have to

> because of years of malnutrition from celiac to make up for. We are also

> using KI sequences, don't know if you've been told about that yet.

>

> Well, anyway, I'm glad you found this track and it's working so well for

> you! Hope it works out for some others too if that's what is best for their

> family. The restrictive diets are so hard to live with, even just cutting

> out gluten is hard and that's far easier than when you add in casein and soy

> and so many other things. It is scary to make decisions for our children,

> and it helps to know something works well for others. I had already seen

> lots of testimonials of other families who took their children off the

> restrictive diets and onto this program, or I wouldn't have had the courage

> to try it myself. It's a wonderful group of people to be working with,

> isn't it? Are you on their email list?

>

> in IL

>

> Off GFCF For Good: WARNING! CONTROVERSIAL!

>

> > I want to start by saying that I recognize that all children are

> different, and that the only data we have is our own little Taryn. What we

> have encountered may be specific to our case.

> >

> > After 3 months of GFCF, Taryn is now transitioning to a diet that is aimed

> at " eating as our grandparents did " , which includes avoiding preserved and

> pre-packaged foods. This includes a full glass of cow's milk and plenty of

> bread with each meal, and absolutely NO soy products!

> >

> > We are working with a semi-local organization who take a different

> approach to biological issues related to autism. Right now, the options are

> two-fold: remove the offending item from the patient's environment, or

> introduce a chemical to minimize the patient's reaction to the offending

> component. This group adds a third option: isolate the biochemical

> deficiency that is responsible for the atypical reaction, and introduce the

> appropriate enzymes, electrolytes, and other catalysts necessary to enable

> the person to effectively process foods. Their focus is on the entire body

> chemistry - both short AND long term. Ironically, the long-term

> physiological hazards of GF/CF began to stack up against the present

> neurological hazards of food-based opioids.

> >

> > So Taryn is now off GF/CF and Cod Liver Oil (they are concerned about

> Vitamin A shutting down the body's natural desire for Vitamin A-based

> foods). As a matter of fact, we have a full sealed, unopened bottle of

> Kirkman Labs CLO and jar of Enzym-Aid that we are looking to get rid of.

> She ran into a few regressions early on, but made a pretty surprising

> rebound in fairly short order. We are continuing to make constant

> biochemical adjustments, modifying the diet to optimize appropriate

> nutrients and introducing the necessary adjunct catalysts.

> >

> > At the same time we are working with a neurodevelopmentalist to develop a

> set of exercises aimed specifically at developing neurological input

> processing functions. This is sort of a hybrid between ABA and sensory

> integration.

> >

> > We have seen such phenomenal progress with everything that Taryn has been

> rediagnosed. In January, she was diagnosed as " moderately autistic. " This

> past week she was reclassified as " sensory integration deficient with speech

> development delay. " Her eye contact is incredibly high, she can't get

> enough hugs and cuddles from her mommy and me, she wants to play with her

> sister, and she shows incremental development almost daily. Best of all, we

> were able to give her real macaroni and cheese for dinner...her favorite

> before the GF/CF.

> >

> > Once again, I want to be sure to reinforce that I know that what I am

> posing here flies in the face of most everything on this list. I am forever

> grateful to all here who set us along the proper path, because we were able

> to prove definitively and conclusively that Taryn's developmental issues

> were predominantly based in metabolism.

> >

> > For many of you, undertaking GF/CF was a leap of faith. I read many

> stories in which many here were encountered by cynical - even hostile -

> family, friends and cohorts. We have undertaken a similar leap of faith and

> have found the payoff worth the risk. Again, it may not be the answer for

> others. Selfishly, I am thankful it is at least for Taryn.

> >

> > If as you read this you find that you would like to know more, we would be

> happy to share details. It is not our intention to detract from the mission

> of this list, which is to serve parents and guardians who wish to implement

> GF-CF as a means of treating their children's autism. We simply want to

> share with others the joys of an amazing, almost stunning ascent toward

> near-normalcy after such a dizzyingly short period of time.

> >

> > We will not be lurking around this list much longer. If you would like a

> response here, we will be happy to do so. If you would like a personal

> response, please contact us at dgstevens@... .

> >

> > God bless all of you as you shoulder the burden of this most unwelcome

> yoke. You are all in our prayers.

> >

> > Tim & s

> > Parents to Kiera (6, NT) and Taryn (2-1/2, " other " )

> >

> >

> >

[Guest guest]

HI

I wrote earlier and am a little disappointed that there is really no info

is being offered here on this diet that has changed your lives. I went to

the Eloctrolyte website and found nothing much. I already use E-lyte. What

I am saying is this. Why tell us that you have found this wonderful

treatment yet you can't offer anything to back it up with. I am sorry to

sound angry , but this whole diet gf/cf is no secret , it if free for

anyone to look at , browse and check it out before even trying it. Why it

there nothing for us to look at? I don't like the secrecy that is

surrounding this. Maybe I am out of line. But what exactly is it????

I have no axe to grind or to tell you that what you're doing is wrong but I

don't understand it and I can't find any info on it. Is there some kind of

fee unlike this group that you need to pay to get in?? If possible could

you please give us a little more info. I mean metabolically speaking I am

already dealing with fatty acids, vitamins , suppliments, electrolytes etc.

Another thing is a majority of the world derives their first milk from mama

and then go on into adulthood never even drinking from a cow. I can't

remember exactly, but I think 2/3 of the world does not drink milk. I

really don't even care if you drink milk it is just that a large population

does not and it is not necessary for calcium. Cow's get their calcium from

leafy greens which by the way are a wonderful way to suppliment calcium in

the diet. thanks kelly

[Guest guest]

I would like to comment as well. First of all, please explain how having no

wheat or casein could be harmful, if you are getting the same nutrition from

other foods??...I do not understand how it could be harmful at all. Many

people are on a celiac diet, and many people do not consume milk and I have

never heard of any adverse reaction. My son did respond very positively to

the GFCF diet, and regresses when slip-ups occur. I would be very afraid to

add them back without completely understanding how all this works. I would

just like to caution all the members of our group to be very careful before

trying something like this. I am very interested in hearing how all this

works.

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

[Guest guest]

In a message dated 4/21/01 4:02:15 PM Eastern Daylight Time,

gfcf4taryn@... writes:

> . Human bodies are designed to obtain calcium from

> mammalian milk. Whatever calcium is added to orange juice, TUMS, or grain

> milks are not intended for bone and tooth development. (Incidentally, the

> calcium in these is the same material that is used in drywall!) High levels

> of soy, for instance, have been shown to stimulate high estrogen production

> in small children, because their bodies are not designed to have soy as a

> primary food source. Over the long run, causing the body to ingest foos

> items that are not intended as primary nutritional sources can lead to

> physiological consequence. For example, the disorder Ricketts is on the

> rise among young children as a response to de-calcification (lack of

> animal-based calcium)

Tim,

What are the sources of these " facts " .

Please send specific information.

[Guest guest]

and others-

I appreciate you all taking my post in the spirit which is was intended. I

will clarify a couple of points I made in my earlier post, as well as give

you links to furter information.

" the long-term physiological hazards of GF/CF " : I should have qualified

this statement by saying that this absent any other more pressing

physiological conditions such as celiac, etc. Just prior to removing Taryn

from GF/CF we had a full allergic work-up on her, with negative results on

all potnetial allergens. The point is that nutritionally the body is

designed to derive the necessary chemicals from specific plant and animal

based materials. Some food materials are more suited to certain species

than others. For example, cows eat grass, horses eat hay, giraffes eat

leaves, and their metabolisms are designed to obtain the needed nutrients

from these foods. Human bodies are designed to obtain calcium from

mammalian milk. Whatever calcium is added to orange juice, TUMS, or grain

milks are not intended for bone and tooth development. (Incidentally, the

calcium in these is the same material that is used in drywall!) High levels

of soy, for instance, have been shown to stimulate high estrogen production

in small children, because their bodies are not designed to have soy as a

primary food source. Over the long run, causing the body to ingest foos

items that are not intended as primary nutritional sources can lead to

physiological consequence. For example, the disorder Ricketts is on the

rise among young children as a response to de-calcification (lack of

animal-based calcium) brought about by the anti-dairy backlash. (I am

neither an advocate or opponent of the dairy industry, by the way, and

neither are the folks in these groups, although they have been accused of

such).

" they are concerned about Vitamin A shutting down the body's natural desire

for Vitamin A-based foods " : As stated in the last section, plants and

animals develop an innate desire for foods they need. We also know that in

the case of opioid-based autistm, kids tend to crave the foods that produce

the specific opioid effect. The purpose for giving Cod Liver Oil is to

maximize Vitamin A, which Dr. Megson's research has shown to improve

visual reponse. Since the body needs Vitamin A, is produces a certain

desire for the consumption of Vitamin A based foods. When Cod Liver Oil is

given, the Vitamin A need level is met, and the body shuts down the desire

for further Vitamin A. The problems are two-fold: Vitamin A-based foods are

typically also rich in other essential nutrients, and these may be neglected

as a result of decreased consumption; and as stated before, nutrients

derived directly from foods are nutritionally preferable to those derived

from processing.

All of this, of course, is a nutshell version of what the two of us took

days to " digest " (pun only partially intended). While I have a background

in Science, I also know that nutritional chemistry is not always an EXACT

science. I am sure that the fine folks at Kirkman Labs may have some

learned response to the issues I've raised here. As with anything in this

crazy, mixed-up challenge that we all face seom amount of healthy skepticism

and investigation is warranted, and I want to heartily agree with what

just posted to that effect.

The email list that in IL refers to (I think, at least) is for folks

who are actually involved in the nutritional program and neurodevelopmental

therapy. We belong to it, but had to sign up as clients with the groups

first, because the primary purpose of the list is in support of folks on the

program. Incidentally, I remember there as being some posts earlier on

where some moms on this list were frustrated over the minimal therapy time

typically available in most states' " birth-to-three " programs. The beauty

of the ND approach is that the neurodevelopmentalists equip the parents to

become the therapist, thereby freeing the family from the state mandated

limiattion of resources. The time my wife used to spend in locating and

preparing special foods is now freed up to work directly in giving Taryn

therapy. Whatever is the opposite of a " vicious circle " that is what this

approach has become for us!

The Web site for the nutritional biochem group is www.chembalance.com

Unfortunately, much of the site is dedicated to primarily stating their

electrolyte components for general nutritional health. They prefer to work

directly with parents on their nutritional approaches to metabolically-based

autism, rather than attempt to take a blanket informational approach.

There are two organizations for neurodevelopment. The oldest is at

www.nacd.org , and a Christian-based offshoot of NACD is at www.ican-do.net

(this is the organization that we are working with).

I hope I have been able to address your concerns thoroughly enough without

going too overboard!

Once again, God bless you all.

Tim

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

>

>

> > I have a comment on all of this. While I still support the diet and

> believe

> > that all parents should try it with their child, my son is no longer

GFCF.

> > We were GFCF for over 7 months. I had committed to atleast 6 months.

My

> > son's gluten peptides were very high when we started. I was very strict

> on

> > the diet. The only slip-ups--if any--were at school where I had no

> control.

> > (They promised that they were very careful.) We saw NO improvements in

my

> > son's behavior in all of that time, and in fact, saw some pretty serious

> > self-injurious behaviors. Basically, it was a miserable seven months.

> Why?

> > I'm not sure. I know many have theorized that perhaps the kids who do

> poorly

> > on the diet are actually having reactions to something used to replace

the

> > wheat, like soy. However, I was careful to rotate my flours and milks.

I

> do

> > have one theory about this and am wondering what you guys think. Dr.

> > Goldberg doesn't generally recommend the gf part of the diet. But he

does

> > say NO WHOLE WHEAT. Well, the flours we generally use to replace the

> wheat

> > are courser, heavier flours than the wheat flour found in plain white

> bread.

> > I am wondering if that is why my son reacted so badly. Perhaps his body

> just

> > couldn't tolerate that course, heavy flour. I rotated between the bean

> flour

> > bread and rice bread. I saw no difference in his behavior with either.

> What

> > do you guys think?

> > Again, I always still recommend the diet to anyone who hasn't tried it

> yet.

> > I say anything that can't harm your child should be given a shot. (I DO

> NOT

> > BELIEVE FOR ONE MINUTE THAT TAKING YOUR CHILD OFF OF WHEAT COULD HARM A

> CHILD

> > IN ANY WAY. IF THAT WERE SO, CELIACS WOULD GET SICKER ONCE THEY BEGIN

THE

> > DIET INSTEAD OF GETTING BETTER. AS LONG AS YOUR CHILD IS STILL GETTING

> THE

> > BASIC FOOD GROUPS,MEANING YOU REPLACE THE WHEAT WITH SOME OTHER GRAIN,

> THEY

> > WILL BE FINE.)

> > Thanks,

> >

> >

> >

> >

[Guest guest]

We have been gf/cf for 6 months now and I have seen tremendous improvment in

my son. But I would be ignorant if I did not continue to reasearch other

interventions. For that reason I would also like to have information on the

therapy mentioned in the original post. I do plan to stay gf/cf because it

works for us. I dont see any harm in bieng gf/cf either and if there is

information that could tell me it may not be alright I would like to know

that too. What was meant by long term phisiological effects? Good luck to

you and your daughter first and foremost I believe in what ever works for

the child. Thanks for sharing your information. F

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

> I have a comment on all of this. While I still support the diet and

believe

> that all parents should try it with their child, my son is no longer GFCF.

> We were GFCF for over 7 months. I had committed to atleast 6 months. My

> son's gluten peptides were very high when we started. I was very strict

on

> the diet. The only slip-ups--if any--were at school where I had no

control.

> (They promised that they were very careful.) We saw NO improvements in my

> son's behavior in all of that time, and in fact, saw some pretty serious

> self-injurious behaviors. Basically, it was a miserable seven months.

Why?

> I'm not sure. I know many have theorized that perhaps the kids who do

poorly

> on the diet are actually having reactions to something used to replace the

> wheat, like soy. However, I was careful to rotate my flours and milks. I

do

> have one theory about this and am wondering what you guys think. Dr.

> Goldberg doesn't generally recommend the gf part of the diet. But he does

> say NO WHOLE WHEAT. Well, the flours we generally use to replace the

wheat

> are courser, heavier flours than the wheat flour found in plain white

bread.

> I am wondering if that is why my son reacted so badly. Perhaps his body

just

> couldn't tolerate that course, heavy flour. I rotated between the bean

flour

> bread and rice bread. I saw no difference in his behavior with either.

What

> do you guys think?

> Again, I always still recommend the diet to anyone who hasn't tried it

yet.

> I say anything that can't harm your child should be given a shot. (I DO

NOT

> BELIEVE FOR ONE MINUTE THAT TAKING YOUR CHILD OFF OF WHEAT COULD HARM A

CHILD

> IN ANY WAY. IF THAT WERE SO, CELIACS WOULD GET SICKER ONCE THEY BEGIN THE

> DIET INSTEAD OF GETTING BETTER. AS LONG AS YOUR CHILD IS STILL GETTING

THE

> BASIC FOOD GROUPS,MEANING YOU REPLACE THE WHEAT WITH SOME OTHER GRAIN,

THEY

> WILL BE FINE.)

> Thanks,

>

>

>

>

[Guest guest]

, do they have a list that I could lurk on awhile and find out more about

this??

Betty

banthony@...

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

From: julie

Are you on their email list?

in IL

[Guest guest]

Regarding multiple sensitivities and restricted diets: it is my

understanding that the theory behind Chem Balances is that the removal of

certain foods is only treating the symptom, and since the underlying

imbalance is not addressed, additional sensitivities will develop and the

diet becomes further restricted, leading to further chemical imbalance.

They believe that if pH and electrolytes are in perfect balance, then

eventually all foods will be tolerated with no ill effect. I know for

myself, when I got the results of all the foods I am " allergic " to, my

chiropractor/nutrionist mentioned that she tests her children periodically

to see what allergies they have overcome and what new allergies have

developped and she changes their diet accordingly, but they are always on

some kind of restrictive diet. It occurred to me that I don't want to go

from one allergy to the next and from one restriction to the next! I know

this new approach is controversial and takes a leap of faith, but it's a

risk I was willing to take to alleviate the stress the restrictive diets was

putting on my family. We still have the stress of no gluten but comparably

it's so much easier than before.

I have continued on this list for ideas for gluten free foods and as a

reminder to pray for all of you. I have often considered posting about

these approaches, in fact I think I did bring it up once, but I know the

idea of it all seems shocking. But then again, I have read of some of your

struggles and thought what if this would be the answer for some of you, and

I have been praying that God will lead you all on the best path for each of

you as individual families. I have a son who died when he was four, and I

keep thinking what if someone knew of something that would have helped him

and kept it to themselves because they thought others might not like it

being brought up? In fact, I can't help but wonder if Chem Balances

wouldn't have helped him, because I've read of them helping people who were

near death and helping people with serious seizure disorders. I'm really

glad this subject was brought up today, because for some of you, maybe this

will help, but it is up to each of us to do our own research and make our

own decisions.

in IL

[Guest guest]

Betty,

No the list is private for people who are on the program. Partly because

it's offered as moral support for those on the program and partly, I'm only

guessing here, to be safe because some therapies are talked about that maybe

shouldn't be tried without a neurodevelopmentalist's instructions. These

are truly loving people who only want to help as many people as they

possibly can, so I'm sure it's not to be exclusionary.

in IL

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

> , do they have a list that I could lurk on awhile and find out more

about this??

> Betty

> banthony@...

> ----- Original Message -----

> From: julie

>

> Are you on their email list?

>

> in IL

>

>

>

>

>

[Guest guest]

Well, I am not the expert in explaining this, the people at Chem Balance

are, and if you want an explanation, it would be best to call them. Their

number is posted on their website. You can call them and they will explain

it to you for free. NO there are no fees, nothing to join, I guess they

just prefer to talk to people personally. They treat each person

individually, not a one-size-fits-all approach at all, so maybe that is why

they prefer to talk, so they can ask questions and so they can be sure to

explain things adequately. They really do work with each person's

INDIVIDUAL chemistry and therefore maybe they can't write too much on the

website. You can ask them all you want about milk too, they're used to it!

in IL

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

> HI

> I wrote earlier and am a little disappointed that there is really no

info

> is being offered here on this diet that has changed your lives. I went to

> the Eloctrolyte website and found nothing much. I already use E-lyte.

What

> I am saying is this. Why tell us that you have found this wonderful

> treatment yet you can't offer anything to back it up with. I am sorry to

> sound angry , but this whole diet gf/cf is no secret , it if free for

> anyone to look at , browse and check it out before even trying it. Why

it

> there nothing for us to look at? I don't like the secrecy that is

> surrounding this. Maybe I am out of line. But what exactly is it????

> I have no axe to grind or to tell you that what you're doing is wrong but

I

> don't understand it and I can't find any info on it. Is there some kind

of

> fee unlike this group that you need to pay to get in?? If possible could

> you please give us a little more info. I mean metabolically speaking I

am

> already dealing with fatty acids, vitamins , suppliments, electrolytes

etc.

> Another thing is a majority of the world derives their first milk from

mama

> and then go on into adulthood never even drinking from a cow. I can't

> remember exactly, but I think 2/3 of the world does not drink milk. I

> really don't even care if you drink milk it is just that a large

population

> does not and it is not necessary for calcium. Cow's get their calcium

from

> leafy greens which by the way are a wonderful way to suppliment calcium in

> the diet. thanks kelly

>

>

>

[Guest guest]

The approach that was developed for our daughter was based upon a 14 day

journal in which the following information was logged:

- What she eat, when she ate it, and how much she ate

- Twice daily measurements of fluid level, blood pressure, body

temperature, heart rate

- Description of skin coloration (flushing, reddening, etc.), stools

(consistency, color, smell and), urine (color and frequency)

- A through log of behavior, activity level, and other types of things that

we suspected may be related to her diet.

The biochemist analyzed the information that we presented then gave us

recommendations based upon the results. The single greatest concern was

that her heart rate was consistently way too high, even for a little one,

and suspected that it was probably related to the high levels of soy in her

diet. (This is, incidentally, one of the " physiological hazards " that I

alluded to earlier).

You're right in that there isn't very much that I can offer to give

substantial backing, other than the one thing that matters most to us - our

daughter is responding significantly.

We are now to this approach, and I'm sure can give much greater

insight through her experience. As I said before, I am not a shill for the

dairy industry. The key to all of this is that our diet is increasingly

encroached with unnatural chemicals (who knows how much of the problem with

dairy is not the product itself, but the chemicals and hormones that have

infiltrated it?)

Chem Balance takes the approach that " we are what we eat. " When you think

about it, MMR is but one imposition to small bodies over the couse of the

past 20 years. We've preservatized, colorized, and otherwise mutated what

goes into our bodies through a variety of chemistry. If you want more

detail, my recommendation is to do what we did, give a call or send an

email. Neilsen (kneilsen@... ) is the office manager, and

will be able to answer your concerns much more effectively than I have

attempted.

All I can offer is that a friend led us down this path (Cathy Steere, whose

book " Too Wise To Be Mistaken, Too Good To Be Unkind " is available on

Amazon, although she doesn't get into much detail on Chem Balance as much as

the neurodevelopmental approach). Her son was GF/CF for 9 months before

going the same path we are. Her story reads very similar to Karyn

Seroussi's, with the same happy ending.

Tim

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

> HI

> I wrote earlier and am a little disappointed that there is really no

info

> is being offered here on this diet that has changed your lives. I went to

> the Eloctrolyte website and found nothing much. I already use E-lyte.

What

> I am saying is this. Why tell us that you have found this wonderful

> treatment yet you can't offer anything to back it up with. I am sorry to

> sound angry , but this whole diet gf/cf is no secret , it if free for

> anyone to look at , browse and check it out before even trying it. Why

it

> there nothing for us to look at? I don't like the secrecy that is

> surrounding this. Maybe I am out of line. But what exactly is it????

> I have no axe to grind or to tell you that what you're doing is wrong but

I

> don't understand it and I can't find any info on it. Is there some kind

of

> fee unlike this group that you need to pay to get in?? If possible could

> you please give us a little more info. I mean metabolically speaking I

am

> already dealing with fatty acids, vitamins , suppliments, electrolytes

etc.

> Another thing is a majority of the world derives their first milk from

mama

> and then go on into adulthood never even drinking from a cow. I can't

> remember exactly, but I think 2/3 of the world does not drink milk. I

> really don't even care if you drink milk it is just that a large

population

> does not and it is not necessary for calcium. Cow's get their calcium

from

> leafy greens which by the way are a wonderful way to suppliment calcium in

> the diet. thanks kelly

>

>

>

[Guest guest]

> After 3 months of GFCF, Taryn is now transitioning to a diet that is aimed

at " eating as our grandparents did " , which includes avoiding preserved and

pre-packaged foods

Did your child have any benefit from the gfcf diet before transitioning to

the new diet? I am curious because I have seen improvements in my son with

gfcf, but, if there is another way that works, I would love to ditch this

gfcf diet. I guess I have more homework to do...UGH!

in Houston

[Guest guest]

Tim & :

May I have your permission to post this very interesting topic at

autismnet http://groups.yahoo.com/group/autismnet??

I think this will give some of the members there an interesting topic

to research on.

Thanks!!

YB

> I want to start by saying that I recognize that all children are

different, and that the only data we have is our own little Taryn.

What we have encountered may be specific to our case.

>

> After 3 months of GFCF, Taryn is now transitioning to a diet that

is aimed at " eating as our grandparents did " , which includes avoiding

preserved and pre-packaged foods. This includes a full glass of

cow's milk and plenty of bread with each meal, and absolutely NO soy

products!

>

> We are working with a semi-local organization who take a different

approach to biological issues related to autism. Right now, the

options are two-fold: remove the offending item from the patient's

environment, or introduce a chemical to minimize the patient's

reaction to the offending component. This group adds a third option:

isolate the biochemical deficiency that is responsible for the

atypical reaction, and introduce the appropriate enzymes,

electrolytes, and other catalysts necessary to enable the person to

effectively process foods. Their focus is on the entire body

chemistry - both short AND long term. Ironically, the long-term

physiological hazards of GF/CF began to stack up against the present

neurological hazards of food-based opioids.

>

> So Taryn is now off GF/CF and Cod Liver Oil (they are concerned

about Vitamin A shutting down the body's natural desire for Vitamin A-

based foods). As a matter of fact, we have a full sealed, unopened

bottle of Kirkman Labs CLO and jar of Enzym-Aid that we are looking

to get rid of. She ran into a few regressions early on, but made a

pretty surprising rebound in fairly short order. We are continuing

to make constant biochemical adjustments, modifying the diet to

optimize appropriate nutrients and introducing the necessary adjunct

catalysts.

>

> At the same time we are working with a neurodevelopmentalist to

develop a set of exercises aimed specifically at developing

neurological input processing functions. This is sort of a hybrid

between ABA and sensory integration.

>

> We have seen such phenomenal progress with everything that Taryn

has been rediagnosed. In January, she was diagnosed as " moderately

autistic. " This past week she was reclassified as " sensory

integration deficient with speech development delay. " Her eye

contact is incredibly high, she can't get enough hugs and cuddles

from her mommy and me, she wants to play with her sister, and she

shows incremental development almost daily. Best of all, we were

able to give her real macaroni and cheese for dinner...her favorite

before the GF/CF.

>

> Once again, I want to be sure to reinforce that I know that what I

am posing here flies in the face of most everything on this list. I

am forever grateful to all here who set us along the proper path,

because we were able to prove definitively and conclusively that

Taryn's developmental issues were predominantly based in metabolism.

>

> For many of you, undertaking GF/CF was a leap of faith. I read

many stories in which many here were encountered by cynical - even

hostile - family, friends and cohorts. We have undertaken a similar

leap of faith and have found the payoff worth the risk. Again, it

may not be the answer for others. Selfishly, I am thankful it is at

least for Taryn.

>

> If as you read this you find that you would like to know more, we

would be happy to share details. It is not our intention to detract

from the mission of this list, which is to serve parents and

guardians who wish to implement GF-CF as a means of treating their

children's autism. We simply want to share with others the joys of

an amazing, almost stunning ascent toward near-normalcy after such a

dizzyingly short period of time.

>

> We will not be lurking around this list much longer. If you would

like a response here, we will be happy to do so. If you would like a

personal response, please contact us at dgstevens@w... .

>

> God bless all of you as you shoulder the burden of this most

unwelcome yoke. You are all in our prayers.

>

> Tim & s

> Parents to Kiera (6, NT) and Taryn (2-1/2, " other " )

>

>

>

[Guest guest]

Fundamentally, any diet that removes processed foods, preservatives,

artificial ingredients and colors, etc has merit. Many diets have

been based on this hypothesis alone. However, I do have issues with

some of the points made in this thread.

(1) Humans are not meant to derive their calcium from mammalian

milk, much less the milk of a mammal not of our own species. Mothers

lactate for a specified period of time to provide the nutrition

required to make a baby healthy, adequately grow, and to allow the

for a child's digestive system to mature to the point of being able

to accept solid foods. Children were not breast fed to adulthood,

with exception of a few cultures, at any point of this history of man

kind. So why should a cow be expected to do so for us?

Additionally, cow and other non-human mamalian milk has become a

readily consumed bevarage only very recently in our history. So

where did we get the calcium we required thousands of years ago?

While it definitely wasn't from orange juice or TUMS, it wasn't from

mamalian milk, either (green, leafy plants.

(2) A very similar arguement could be made regarding wheat. Wheat

is not one of the ancient grains used by humans. It was developed as

a cultivatable crop some time in our more recent past.

(3) The physiological dangers of GF/CF diet, in my own opinion, are

unfounded. How could a diet that eliminates substances only very

recently introduced as a food item to humans be concidered

dangerous? I submit that because of these items, we as humans a have

unconsciously eliminated the true, natural, intended sources of

calcium and other minerals from our diet (read TUMS and ORANGE JUICE

comment above).

(4) Where do you think cow's milk gets calcium? I submit to you,

from the green grass they eat. And the grass? From the minerals in

the dirt from which it grows. And the dirt? Well...you get the

idea. The bottom line is that gypsum wall board (an excavated

material that is processed into a flat sheet) and milk get the

calcium from the same source. In fact, Encyclopedia Britannica

says: " ...Calcium is found mostly as limestone, gypsum and fluorite.

Stalagmites and stalactites contain calcium carbonate.... "

How can you make statements about the safety of the GF/CF diet, the

need for cow's milk, calcium sources, etc. without having any real

data for us? I find it interesting that all of this information can

only be found by joining a private list server or by calling or

emailing the company...

Despite my personal reservations, I truly wish all of you who intend

to utilize this form of dietary intervention the best of luck.

People probably said the same types of things to and when

they started the GF/CF diet....

Peace.

[Guest guest]

I wholeheartedly agree with your points. I am really discouraged that some

would still argue the point that this diet is unhealthy. I thought we were

past that. Pioneers of this diet like Karyn and endured unfounded

criticism and their constant struggle to justify this diet gave us the

opportunity to administer this diet with only the occasional dose of

ignorant criticism.

Pat in Ohio

[Guest guest]

I miss nothing about my son and his diet before we were GF CF

We have so many gains and all he ate was CRAP before the diet.

Now he is the healthiest 4 year old I know (besides my GF CF friends of

course! They are healthy too.)

We have so many gains from the diet as well.

But even if we had NO GAINS (but we have had countless gains) I would not

take Jeff off the diet. He eats real food instead of dyed, chemicaled,

sugared and other bad stuff CRAP he ate before.

Just my 2 cents..

A Jeffs mom

(And to each their own... each child is different and I TOTALLY RESPECT

EVERY MOM on the planet!! Dads too!)

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

We have been gf/cf for 6 months now and I have seen tremendous improvment in

my son. But I would be ignorant if I did not continue to reasearch other

interventions. For that reason I would also like to have information on the

therapy mentioned in the original post. I do plan to stay gf/cf because it

works for us. I dont see any harm in bieng gf/cf either and if there is

information that could tell me it may not be alright I would like to know

that too. What was meant by long term phisiological effects? Good luck to

you and your daughter first and foremost I believe in what ever works for

the child. Thanks for sharing your information. F

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

> I have a comment on all of this. While I still support the diet and

believe

> that all parents should try it with their child, my son is no longer GFCF.

> We were GFCF for over 7 months. I had committed to atleast 6 months. My

> son's gluten peptides were very high when we started. I was very strict

on

> the diet. The only slip-ups--if any--were at school where I had no

control.

> (They promised that they were very careful.) We saw NO improvements in my

> son's behavior in all of that time, and in fact, saw some pretty serious

> self-injurious behaviors. Basically, it was a miserable seven months.

Why?

> I'm not sure. I know many have theorized that perhaps the kids who do

poorly

> on the diet are actually having reactions to something used to replace the

> wheat, like soy. However, I was careful to rotate my flours and milks. I

do

> have one theory about this and am wondering what you guys think. Dr.

> Goldberg doesn't generally recommend the gf part of the diet. But he does

> say NO WHOLE WHEAT. Well, the flours we generally use to replace the

wheat

> are courser, heavier flours than the wheat flour found in plain white

bread.

> I am wondering if that is why my son reacted so badly. Perhaps his body

just

> couldn't tolerate that course, heavy flour. I rotated between the bean

flour

> bread and rice bread. I saw no difference in his behavior with either.

What

> do you guys think?

> Again, I always still recommend the diet to anyone who hasn't tried it

yet.

> I say anything that can't harm your child should be given a shot. (I DO

NOT

> BELIEVE FOR ONE MINUTE THAT TAKING YOUR CHILD OFF OF WHEAT COULD HARM A

CHILD

> IN ANY WAY. IF THAT WERE SO, CELIACS WOULD GET SICKER ONCE THEY BEGIN THE

> DIET INSTEAD OF GETTING BETTER. AS LONG AS YOUR CHILD IS STILL GETTING

THE

> BASIC FOOD GROUPS,MEANING YOU REPLACE THE WHEAT WITH SOME OTHER GRAIN,

THEY

> WILL BE FINE.)

> Thanks,

>

>

>

>

[Guest guest]

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

" Human bodies are designed to obtain calcium from

mammalian milk. "

I always thought that humans assimilated calcium from vegetables (ie.

broccoli) best. I also understand that most calcium supplements are more

easily utilised than milk sources.

We have been gf\cf for several months and are pursuing other interventions

, primarily ABA. This diet is paving the way for working on our sons

cognitive, social and communication skills. We have seen dramatic

improvement in all these areas with the diet alone and feel that now he has

become so much more calm and " teachable " . I believe that for ASD kids with

significant GI problems the diet is critical for removing the harm being

done to the brain. This is probably not true for all ASD kids.

Best wishes for all our children,

.

[Guest guest]

You know , I just found this post Tim and want to point out that one sign of

mercury toxicity is a racing or faster than normal heartbeat. Mercury is

the root of many of our problems, what I was talking about in peeling the

onion. Mercury harms the immune sys. and makes it underresponsive to yeast ,

bad bacteria, then leaky gut etc. Supposedly soy has a very similar protein

" makeup " as gluten and so you may get a similar rxn to soy as you would to

gluten. Is soy the true " enemy " , heart beat increaser?? Maybe it is the

mercury toxicity?? P.

Re: Off GFCF For Good: WARNING! CONTROVERSIAL!

>

>

> > HI

> > I wrote earlier and am a little disappointed that there is really no

> info

> > is being offered here on this diet that has changed your lives. I went

to

> > the Eloctrolyte website and found nothing much. I already use E-lyte.

> What

> > I am saying is this. Why tell us that you have found this wonderful

> > treatment yet you can't offer anything to back it up with. I am sorry

to

> > sound angry , but this whole diet gf/cf is no secret , it if free for

> > anyone to look at , browse and check it out before even trying it.

Why

> it

> > there nothing for us to look at? I don't like the secrecy that is

> > surrounding this. Maybe I am out of line. But what exactly is it????

> > I have no axe to grind or to tell you that what you're doing is wrong

but

> I

> > don't understand it and I can't find any info on it. Is there some kind

> of

> > fee unlike this group that you need to pay to get in?? If possible

could

> > you please give us a little more info. I mean metabolically speaking I

> am

> > already dealing with fatty acids, vitamins , suppliments, electrolytes

> etc.

> > Another thing is a majority of the world derives their first milk from

> mama

> > and then go on into adulthood never even drinking from a cow. I can't

> > remember exactly, but I think 2/3 of the world does not drink milk. I

> > really don't even care if you drink milk it is just that a large

> population

> > does not and it is not necessary for calcium. Cow's get their calcium

> from

> > leafy greens which by the way are a wonderful way to suppliment calcium

in

> > the diet. thanks kelly

> >

> >

> >

[Guest guest]

- I completely agree with you on this one. You are right on the

money.

Perhaps it is worth a check into a blood /hair test for metals overload via

Dr's Data.

Take care

A jeffs mom

Re: Off GFCF For Good: WARNING!

CONTROVERSIAL!

You know , I just found this post Tim and want to point out

that one sign of

mercury toxicity is a racing or faster than normal

heartbeat. Mercury is

the root of many of our problems, what I was talking about

in peeling the

onion. Mercury harms the immune sys. and makes it

underresponsive to yeast ,

bad bacteria, then leaky gut etc. Supposedly soy has a very

similar protein

" makeup " as gluten and so you may get a similar rxn to soy

as you would to

gluten. Is soy the true " enemy " , heart beat increaser??

Maybe it is the

mercury toxicity?? P.

Re: Off GFCF For Good: WARNING!

CONTROVERSIAL!

>

>

> > HI

> > I wrote earlier and am a little disappointed that

there is really no

> info

> > is being offered here on this diet that has changed your

lives. I went

to

> > the Eloctrolyte website and found nothing much. I

already use E-lyte.

> What

> > I am saying is this. Why tell us that you have found

this wonderful

> > treatment yet you can't offer anything to back it up

with. I am sorry

to

> > sound angry , but this whole diet gf/cf is no secret ,

it if free for

> > anyone to look at , browse and check it out before even

trying it.

Why

> it

> > there nothing for us to look at? I don't like the

secrecy that is

> > surrounding this. Maybe I am out of line. But what

exactly is it????

> > I have no axe to grind or to tell you that what you're

doing is wrong

but

> I

> > don't understand it and I can't find any info on it. Is

there some kind

> of

> > fee unlike this group that you need to pay to get in??

If possible

could

> > you please give us a little more info. I mean

metabolically speaking I

> am

> > already dealing with fatty acids, vitamins ,

suppliments, electrolytes

> etc.

> > Another thing is a majority of the world derives their

first milk from

> mama

> > and then go on into adulthood never even drinking from a

cow. I can't

> > remember exactly, but I think 2/3 of the world does not

drink milk. I

> > really don't even care if you drink milk it is just that

a large

> population

> > does not and it is not necessary for calcium. Cow's get

their calcium

> from

> > leafy greens which by the way are a wonderful way to

suppliment calcium

in

> > the diet. thanks kelly

> >

> >

> >