Re: New Firsts YAY

April 12, 2003

Ohhhh.....maybe this is a good thing here! I am hoping it is working

for you! I know it is a bother, but wow! If it works that is

wonderful. :-)

April 12, 2003

I hope it keeps up!! You'll all feel better!

Sue

April 12, 2003

>He's sitting next to me in his chair babbling happily playing with

>the playdough (making sure he doesn't eat it).

,

GFCF play clay is really easy to make, and it feels the same as regular,

and it smells better!

1/2 cup Rice Flour

1/2 cup corn starch

1/2 cup salt

2tsp. Cream of tarter

1 cup water

1 tsp. cooking oil

food coloring

Combine all ingredients in a pot and cook over low heat until it forms a

ball. When cool enough to touch 'kneed' it in your hands till it is smooth.

If it is too sticky let it sit out awhile. Store in an airtight container.

( I washed out the playdough cans to trick Juli.) This wont spoil because

of all the salt. We have been using ours almost everyday for a month and it

is still fine.

>I'm not totally convinced it's the diet YET, but if it keeps up, then

>I'll have to conceed that it's working.

Good luck with the diet. It was no miracle cure for my 2, but Hal never

slept through the night until going GFCF, we have tried going off the diet

3 times and the sleep disturbances came back each time. Juli stopped

banging her head and spinning after going GFCF. Both kids have mostly

normal poops when GFCF, and the most horrible yucky unmentionable stuff

when not. (I shudder to think about it) We have found it worthwhile to keep

to, but they are both still really, really autistic.

- G

April 13, 2003

Thanks so much for the recipe! I don't even know where to begin

about this diet. I'm so confused right now, Zach's supposed to be

going in for re-evaluation next month and IF this diet is going to

work as good as I'm thinking for him, then they're gonna think I'm

crazy bringing this child in to them. That's ok though, I'm keeping

a diary. His therapists are keeping a diary. And if they don't

believe me screw em.

I wonder why it seems to work well with some, limited with others,

and yet not at all with some. Kindof makes me wonder if there are

two different disease processes going on.

BTW, I'm trying to create a database of name brand grocery store GFCF

items, so if you know any that are verified, let me know please.

> ,

> GFCF play clay is really easy to make, and it feels the same as

regular,

> and it smells better!

>

> 1/2 cup Rice Flour

> 1/2 cup corn starch

> 1/2 cup salt

> 2tsp. Cream of tarter

> 1 cup water

> 1 tsp. cooking oil

> food coloring

> Combine all ingredients in a pot and cook over low heat until it

forms a

> ball. When cool enough to touch 'kneed' it in your hands till it

is smooth.

> If it is too sticky let it sit out awhile. Store in an airtight

container.

> ( I washed out the playdough cans to trick Juli.) This wont spoil

because

> of all the salt. We have been using ours almost everyday for a

month and it

> is still fine.

>

> Good luck with the diet. It was no miracle cure for my 2, but

Hal never

> slept through the night until going GFCF, we have tried going off

the diet

> 3 times and the sleep disturbances came back each time. Juli

stopped

> banging her head and spinning after going GFCF. Both kids have

mostly

> normal poops when GFCF, and the most horrible yucky unmentionable

stuff

> when not. (I shudder to think about it) We have found it

worthwhile to keep

> to, but they are both still really, really autistic.

> - G

>

April 13, 2003

wrote;

>> I don't even know where to begin

>>about this diet. .

and;

>>BTW, I'm trying to create a database of name brand grocery store GFCF

>>items, so if you know any that are verified, let me know please.

,

GFCFkids group has a 52 page list of OK foods, forbidden foods,

ingredients, definitions, etc, etc etc, etc. Some people in that group have

a bit of 'religious fanatic' thing going though (or at least they did 2

years ago when I started).

I would be happy to help as much as I can. I don't have a lot of

recipes to offer though because Hal has been eating nothing but 3 types of

crackers, corn chips and Louis Rich turkey Kielbasa for almost 2 years!!!

He is starting to branch out a bit now, so we are trying some new things.

Also there are a couple of Celiac groups that have lists of Gluten free (but

not Casein). I can't find the links right now, as Hal is sitting on my

sholders, but I wiil try tomorrow. - G

April 13, 2003

wrote;

>> I don't even know where to begin

>>about this diet. .

and;

>>BTW, I'm trying to create a database of name brand grocery store GFCF

>>items, so if you know any that are verified, let me know please.

,

GFCFkids group has a 52 page list of OK foods, forbidden foods,

ingredients, definitions, etc, etc etc, etc. Some people in that group have

a bit of 'religious fanatic' thing going though (or at least they did 2

years ago when I started).

I would be happy to help as much as I can. I don't have a lot of

recipes to offer though because Hal has been eating nothing but 3 types of

crackers, corn chips and Louis Rich turkey Kielbasa for almost 2 years!!!

He is starting to branch out a bit now, so we are trying some new things.

Also there are a couple of Celiac groups that have lists of Gluten free (but

not Casein). I can't find the links right now, as Hal is sitting on my

sholders, but I wiil try tomorrow. - G

April 13, 2003

> ,

> GFCFkids group has a 52 page list of OK foods, forbidden foods,

> ingredients, definitions, etc, etc etc, etc. Some people in that

group have

> a bit of 'religious fanatic' thing going though (or at least they

did 2

> years ago when I started).

I just unsubbed from that group...most people were talking about

phenols and nitrates and salisylics. There was not a thing in their

database about which foods people had found to be gluten free, and

when asked in the group, they said to BUY the book advertised on the

GFCFdiet website. I don't have the money to be buying a bunch of

books, nor do I have a credit card to order them.

I would be happy to help as much as I can. I don't have a lot of

> recipes to offer though because Hal has been eating nothing but 3

types of crackers, corn chips and Louis Rich turkey Kielbasa for

almost 2 years!!!

> He is starting to branch out a bit now, so we are trying some new

things. Also there are a couple of Celiac groups that have lists of

Gluten free (but not Casein). I can't find the links right now, as

Hal is sitting on my sholders, but I wiil try tomorrow. - G

LOL I thought Zach was the only one who liked to perch on my head!

Zach is doing great about eating variety, and he doesn't often ask

for his milk cheese or crackers used to sustain his diet.

Thanks.

>

April 13, 2003

> Zach is doing great about eating variety, and he doesn't often ask

> for his milk cheese or crackers used to sustain his diet.

This reminds me!

The other day in the library I found a cookbook called 'The Dairy-free

kitchen'. Sorry I can't remember the author. Anyway, a lot of the recipes

were the same things you'd find in other non-dairy books -- recipes for

things that don't take dairy to begin with! BUT, there WERE recipes for

white sauce, pudding, making your own yogurt with soy or rice milk, and a

bunch of dessert and cake recipes that had been modified to either use soy

or rice milk, or no milk at all.

Thought you'd like to know. :-)

Jacquie

April 13, 2003

It's quite possible that he has leaky gut. I know Jacqui did, maybe still

does...

Some kids don't have digestive problems...

Good for you for sticking it out!

Penny

-----------

I wonder why it seems to work well with some, limited with others,

and yet not at all with some. Kindof makes me wonder if there are

two different disease processes going on.

April 13, 2003

Wonderful! A library book, and I'm sure any gluten products can be

subsituted. Thanks !

>

> > Zach is doing great about eating variety, and he doesn't often ask

> > for his milk cheese or crackers used to sustain his diet.

>

> This reminds me!

>

> The other day in the library I found a cookbook called 'The Dairy-

free

> kitchen'. Sorry I can't remember the author. Anyway, a lot of the

recipes

> were the same things you'd find in other non-dairy books -- recipes

for

> things that don't take dairy to begin with! BUT, there WERE

recipes for

> white sauce, pudding, making your own yogurt with soy or rice milk,

and a

> bunch of dessert and cake recipes that had been modified to either

use soy

> or rice milk, or no milk at all.

>

> Thought you'd like to know. :-)

>

> Jacquie

April 15, 2003

>

> I wonder why it seems to work well with some, limited with others,

> and yet not at all with some. Kindof makes me wonder if there are

> two different disease processes going on.

>

I think there are probably more than two! I think that autism probably has

a number of causes.

One of my sometimes thoughts is that vaccine injured kids respond better to

the diet than mostly genetic kids (now, the vaccine injured kids are genetic

also in a way, IMO, they have something in their genetic make up that makes

them respond to a vaccine oddly). I don't know how true any of this is,

heck, I don't even know for sure that there are vaccine injured kids (I do

know that Putter is NOT one of them (no vaccines until past two) and that

Putter is probably almost all genetic), but that is my crazy thought of the

day!

Salli

April 15, 2003

>

> I wonder why it seems to work well with some, limited with others,

> and yet not at all with some. Kindof makes me wonder if there are

> two different disease processes going on.

>

I think there are probably more than two! I think that autism probably has

a number of causes.

One of my sometimes thoughts is that vaccine injured kids respond better to

the diet than mostly genetic kids (now, the vaccine injured kids are genetic

also in a way, IMO, they have something in their genetic make up that makes

them respond to a vaccine oddly). I don't know how true any of this is,

heck, I don't even know for sure that there are vaccine injured kids (I do

know that Putter is NOT one of them (no vaccines until past two) and that

Putter is probably almost all genetic), but that is my crazy thought of the

day!

Salli

April 15, 2003

>

> In Seroussi's book, she speculates that the genetic marker kids tend

> to respond better to the removal of casein

And Putter does self-limit on dairy products. One small bite of ice cream

does him fine. I think it might upset his tummy a bit and he simply knows

that. He loved yogurt years ago but will no longer touch it.

Salli

April 15, 2003

>

> In Seroussi's book, she speculates that the genetic marker kids tend

> to respond better to the removal of casein

And Putter does self-limit on dairy products. One small bite of ice cream

does him fine. I think it might upset his tummy a bit and he simply knows

that. He loved yogurt years ago but will no longer touch it.

Salli

April 15, 2003

This is great info. I think I can handle the casein free, but the gluten

part seems to difficult.

Cecilia from Perú, mom to Dessirée (05/07/99)

Lovely husband

-----Mensaje original-----

De: The Hunny Family

Enviado el: Martes, 15 de Abril de 2003 09:38 a.m.

Para: parenting_autism

Asunto: Re: Re: New Firsts YAY

> One of my sometimes thoughts is that vaccine injured kids respond

better

to

> the diet than mostly genetic kids

In Seroussi's book, she speculates that the genetic marker kids

tend

to respond better to the removal of casein and that the vaccine-related

kids

tend to respond better to the removal of gluten. I cannot remember WHY

she

thinks this, but I know it bore true with -- he's as genetic a case

as

they come, and it was the removal of casein that made all the

difference.

He actually had to be switched to soy formula at 7wks because he was

alarmingly dehydrated (had to hospitalized for days), but we put him on

whole milk when he finished formula. I wonder what might have been had

we

gone to soy milk instead... Marc also had to switch to soy as a child,

as

did I. My mom was celiac for the first seven years of her life; her

brother

still is.

Gluten removal had little to no effect on . That surprised me,

given

the history of celiac disease in my family.

Jacquie

April 15, 2003

This is great info. I think I can handle the casein free, but the gluten

part seems to difficult.

Cecilia from Perú, mom to Dessirée (05/07/99)

Lovely husband

-----Mensaje original-----

De: The Hunny Family

Enviado el: Martes, 15 de Abril de 2003 09:38 a.m.

Para: parenting_autism

Asunto: Re: Re: New Firsts YAY

> One of my sometimes thoughts is that vaccine injured kids respond

better

to

> the diet than mostly genetic kids

In Seroussi's book, she speculates that the genetic marker kids

tend

to respond better to the removal of casein and that the vaccine-related

kids

tend to respond better to the removal of gluten. I cannot remember WHY

she

thinks this, but I know it bore true with -- he's as genetic a case

as

they come, and it was the removal of casein that made all the

difference.

He actually had to be switched to soy formula at 7wks because he was

alarmingly dehydrated (had to hospitalized for days), but we put him on

whole milk when he finished formula. I wonder what might have been had

we

gone to soy milk instead... Marc also had to switch to soy as a child,

as

did I. My mom was celiac for the first seven years of her life; her

brother

still is.

Gluten removal had little to no effect on . That surprised me,

given

the history of celiac disease in my family.

Jacquie

April 15, 2003

I don't think it's a crazy thought at all.

> >

> > I wonder why it seems to work well with some, limited with others,

> > and yet not at all with some. Kindof makes me wonder if there are

> > two different disease processes going on.

> >

> I think there are probably more than two! I think that autism

probably has

> a number of causes.

>

> One of my sometimes thoughts is that vaccine injured kids respond

better to

> the diet than mostly genetic kids (now, the vaccine injured kids

are genetic

> also in a way, IMO, they have something in their genetic make up

that makes

> them respond to a vaccine oddly). I don't know how true any of

this is,

> heck, I don't even know for sure that there are vaccine injured

kids (I do

> know that Putter is NOT one of them (no vaccines until past two)

and that

> Putter is probably almost all genetic), but that is my crazy

thought of the

> day!

>

> Salli

April 15, 2003

I don't think it's a crazy thought at all.

> >

> > I wonder why it seems to work well with some, limited with others,

> > and yet not at all with some. Kindof makes me wonder if there are

> > two different disease processes going on.

> >

> I think there are probably more than two! I think that autism

probably has

> a number of causes.

>

> One of my sometimes thoughts is that vaccine injured kids respond

better to

> the diet than mostly genetic kids (now, the vaccine injured kids

are genetic

> also in a way, IMO, they have something in their genetic make up

that makes

> them respond to a vaccine oddly). I don't know how true any of

this is,

> heck, I don't even know for sure that there are vaccine injured

kids (I do

> know that Putter is NOT one of them (no vaccines until past two)

and that

> Putter is probably almost all genetic), but that is my crazy

thought of the

> day!

>

> Salli

April 15, 2003

I don't think it's a crazy thought at all.

> >

> > I wonder why it seems to work well with some, limited with others,

> > and yet not at all with some. Kindof makes me wonder if there are

> > two different disease processes going on.

> >

> I think there are probably more than two! I think that autism

probably has

> a number of causes.

>

> One of my sometimes thoughts is that vaccine injured kids respond

better to

> the diet than mostly genetic kids (now, the vaccine injured kids

are genetic

> also in a way, IMO, they have something in their genetic make up

that makes

> them respond to a vaccine oddly). I don't know how true any of

this is,

> heck, I don't even know for sure that there are vaccine injured

kids (I do

> know that Putter is NOT one of them (no vaccines until past two)

and that

> Putter is probably almost all genetic), but that is my crazy

thought of the

> day!

>

> Salli

April 15, 2003

> One of my sometimes thoughts is that vaccine injured kids respond better

to

> the diet than mostly genetic kids

In Seroussi's book, she speculates that the genetic marker kids tend

to respond better to the removal of casein and that the vaccine-related kids

tend to respond better to the removal of gluten. I cannot remember WHY she

thinks this, but I know it bore true with -- he's as genetic a case as

they come, and it was the removal of casein that made all the difference.

He actually had to be switched to soy formula at 7wks because he was

alarmingly dehydrated (had to hospitalized for days), but we put him on

whole milk when he finished formula. I wonder what might have been had we

gone to soy milk instead... Marc also had to switch to soy as a child, as

did I. My mom was celiac for the first seven years of her life; her brother

still is.

Gluten removal had little to no effect on . That surprised me, given

the history of celiac disease in my family.

Jacquie

April 15, 2003

I thought so too Celilia, but it's really not that hard once you get

the hang of it. The only thing that i've really changed is making my

own bread for him, and with a breadmaker, it's been very easy.

sent me a list of things you can buy in a grocery store that are

gluten free, and I'm finding many new food items I had previously not

known about just by reading the labels. (there is an entire list of

what to look for on the www.gfcfdiet.com website). There are groups

dedicated just to this diet and these people seem to know everything.

Any local health food store carries these staple food items like

pastas that are gluten free, and Prego spaghetti sauce (with no

cheese) is GFCF free. A lot of people will start with the casein

part, then move onto the gluten part.

As far as the vaccine/genetic part, I can't be sure which Zach is...I

had always heard that MMR was the culprit, but he had symptoms well

before his MMR....then I heard the other vaccines could have the

thimerisol in them as well. I've always had issue with the genetic

part because it seems nobody on either side of our family has any

autism link at all.

> This is great info. I think I can handle the casein free, but the

gluten

> part seems to difficult.

>

> Cecilia from Perú, mom to Dessirée (05/07/99)

>

> Lovely husband

>

> -----Mensaje original-----

> De: The Hunny Family [mailto:vhunnius@l...]

> Enviado el: Martes, 15 de Abril de 2003 09:38 a.m.

> Para: parenting_autism

> Asunto: Re: Re: New Firsts YAY

>

> > One of my sometimes thoughts is that vaccine injured kids respond

> better

> to

> > the diet than mostly genetic kids

>

> In Seroussi's book, she speculates that the genetic marker

kids

> tend

> to respond better to the removal of casein and that the vaccine-

> tend to respond better to the removal of gluten. I cannot remember

WHY

> she

> thinks this, but I know it bore true with -- he's as genetic a

case

> as

> they come, and it was the removal of casein that made all the

> difference.

> He actually had to be switched to soy formula at 7wks because he was

> alarmingly dehydrated (had to hospitalized for days), but we put

him on

> whole milk when he finished formula. I wonder what might have been

had

> we

> gone to soy milk instead... Marc also had to switch to soy as a

child,

> as

> did I. My mom was celiac for the first seven years of her life; her

> brother

> still is.

>

> Gluten removal had little to no effect on . That surprised me,

> given

> the history of celiac disease in my family.

>

> Jacquie

>

April 15, 2003