Re: Bad research on how GFCF does not work and our experience

[Guest guest]

I've seen so many people here locally who do the diet, massive

vitamins, having urine analyzed, chelating, etc.- but have never seen

any miracles or improvements because of it. Of course, they all swear

by it - the supplements, the elimination of this or that - it does

miraculous things. But the kid looks the same to me, acts the same,

has to have the same help at school, etc. I guess if it helps, then

you should do what works. But a lot of the studies about vaccines and

diets are coming back to show that these things have very little to do

with autism. Or little effect in improving the condition. The little

guy I used to work with who has severe autism always was doing

something besides the ABA program. Nothing worked. I never saw any

improvement with fish oil this or that or eliminating dairy or

whatever. One thing was supposed to increase his attention span,

another thing was supposed to calm him down, another would fix his

digestion problems. But nothing ever worked.

Anyway, back to diet: I suppose if you have a problem with digestion

somewhere, eliminating foods known to cause those problems would make

it better. That is common sense and works for everyone who has those

kinds of problems except those who must take more specific meds for

specific digestion issues. My one dd doesn't do dairy because she has

lactose intolerance and it just goes right through her. She's not

autistic.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Bad research on how GFCF does not work and

our experience

A relative of mine sent me this

http://www.webmd.com/brain/autism/news/20100519/autism-diet-may-not-improve-symp\

toms

The small group of ASD kids were observed for 18 weeks while on the

diet. Every week a " challenge snack " (with GC) would be given to

compare if any difference. It wasn't done so some kids consistently got

the " challenge " snacks to compare with the kids that were given

placebos. It said " The routine continued until each child received each

snack three times over 12 weeks. "

With my ds, it took about 3 months on the diet to really see a

different. Within that time NO trace of any gluten or casein. If you

give them wheat every week then you are NOT on the diet. It's

ridiculous.

There is a lot of half-cooked research out there, and we don't have the

time to read all the " what doesn't work " stuff. I saw a clear

difference in my ds' behavior when he was back on wheat and diary for 2

weeks just so we could get blood tests done. He was not sleeping well,

was constipated, and acted like he was behind a mental fog and

couldn't/wouldn't talk to us.

This week after we've been back on GFCF diet, my ds has been really in

context, affectionate, open and chatty. He told us what happened at

school FOR THE FIRST TIME. He also retells and summarizes stories we

have read together.

[Guest guest]

Be careful about making sweeping statements like " it never works, they always still need the support " .  Especially if it's based primarily on one or two kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave up because it was too hard and it didn't work for their daughter.  Upon further examination, I discovered what she meant by it was too hard is that her daughter would get up in the middle of the night and climb up to the highest cabinet and 'steal' gluten cereal (this was in Ireland where the prevailing thought is a household is not complete without a box of Wheatabix!).  So of course it didn't work for her -- she was never off gluten.

You only need to hear one story about how a child made great improvements off gluten and casein, or even one story where the improvements seemed minor, but when the child accidentally ate some gluten, several months later, his symptoms and challenging behaviors went through the roof, to know that there's validity behind it. 

And of course, you're absolutely right -- if you know your child's intolerant to a food, you take it out of his/her diet.  Fortunately, research shows that gluten and casein are likely foods your child's intolerant to if he has autism.  So you have a good starting point. 

Denawww.listenbetterwithAIT.com

[Guest guest]

Try to cut and paste what you are replying to when you reply. Then

everyone knows what you are referencing.

I am assuming you meant me/my post but I am not sure because you said I

was making " sweeping statements " . I certainly did not do that. I made

very specific statements about specific people. If you read my post, I

talked specifically about the kids I've seen in my area whose parents

have been doing this. It's beyond just 2 kids. We used to have an

active support group here and I met a lot of the parents and kids in

the process over the years. I worked with several very closely as well

and all our friends at the time were from the group so we were together

a lot. You'd think I would have seen just one " story " that was true

and where the child actually did improve. But I never did.

I also do not believe that kids with autism will always need support -

many will, some won't. It depends on the child with autism really. I

don't know why you think I said that unless you are referring to

someone else's post?

My point is that all you do have is one " story " where a child performed

miracles on a special vitamin. The science does not support it as was

shown in the article and various articles lately that are now coming

out. If people want to try these things, they can do so, certainly.

Additionally, having autism does not mean one has food intolerances at

all and I don't see the science proving that it is true. That was also

the point of the article referenced. For my own personal experience

with my kids (only 5 of them being referenced this time), the one of my

kids who does have a digestion problem is not autistic. The two with

autism do not have digestion problems and 2 NT's who do not have

digestion problems.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: Bad research on how GFCF does not work

and our experience

Be careful about making sweeping statements like " it never works, they

always still need the support " .  Especially if it's based primarily on

one or two kids you've known.

I had a mom tell me they tried GF/CF for 6 months and finally gave up

because it was too hard and it didn't work for their daughter.  Upon

further examination, I discovered what she meant by it was too hard is

that her daughter would get up in the middle of the night and climb up

to the highest cabinet and 'steal' gluten cereal (this was in Ireland

where the prevailing thought is a household is not complete without a

box of Wheatabix!).  So of course it didn't work for her -- she was

never off gluten.

You only need to hear one story about how a child made great

improvements off gluten and casein, or even one story where the

improvements seemed minor, but when the child accidentally ate some

gluten, several months later, his symptoms and challenging behaviors

went through the roof, to know that there's validity behind it. 

And of course, you're absolutely right -- if you know your child's

intolerant to a food, you take it out of his/her diet.  Fortunately,

research shows that gluten and casein are likely foods your child's

intolerant to if he has autism.  So you have a good starting point. 

Dena

www.listenbetterwithAIT.com

[Guest guest]

Hi Dena,

I must have missed a large part of this--so I aplogize if what I say isn't extremely relevant.

I was just a bit aghast when I read that autism kids have seperate nutritional issues like the gluten thing.

We just found out that my son has Aspergers----and he only has a few of the many signs of aspergers--I was under the impression that Autism is a HUGE umbrella--and though our children may share SOME similiarities to others, it's not something you can just broadly categorize. Low functioning autism seems VERY different than Aspergers.

Am I ignorant in thinking this just seems too easy to think the entire spectrum could be affected by this gluten issue?

Before we found out about Aspergers, we were told he had ADD--and we tried every type nutritional thing (no artificial dyes, etc), it didn't change anything with him. So I'm not sure my son's social issues are going to be helped in any form by a gluten free diet. If they will, I'm in--but it seems to me, he just needs social training right now, not for the rest of his life. My son is smart and can learn anything in his own time. I'm expecting that he will not be dependent the rest of his life and need support forever.

I mean what is NORMAL? Who doesn't have differences? Seriously, everyone could be labeled somewhere with something. So to me, I don't want to CURE my kid--cause I think his eccentricities are awesome. I don't even like average things, I like different. So I greatly believe in helping my child find his place in life and help him meet the goals he has, and part of that will be social training. He doesn't have to change to fit in, he just has to understand how to use social skills to fit in a certain place at a certain time. I think I must have Aspergers, because I'm 35 years old and just figuring out that part!

Is there research somewhere that shows children with Aspergers benefit greatly from this type of diet? I just err on the side of caution when someone mentions miracles or cures for my Aspie. What the hell? I don't want my kid CURED--what does that mean anyway? Read Temple--she doesn't believe in CURING autistic kids either!

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

( ) Re: Bad research on how GFCF does not work and our experienceBe careful about making sweeping statements like "it never works, they always still need the support". Especially if it's based primarily on one or two kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave up because it was too hard and it didn't work for their daughter. Upon further examination, I discovered what she

meant by it was too hard is that her daughter would get up in the middle of the night and climb up to the highest cabinet and 'steal' gluten cereal (this was in Ireland where the prevailing thought is a household is not complete without a box of Wheatabix!). So of course it didn't work for her -- she was never off gluten.You only need to hear one story about how a child made great improvements off gluten and casein, or even one story where the improvements seemed minor, but when the child accidentally ate some gluten, several months later, his symptoms and challenging behaviors went through the roof, to know that there's validity behind it. And of course, you're absolutely right -- if you know your child's intolerant to a food, you take it out of his/her diet. Fortunately, research shows that gluten and casein are likely foods your child's intolerant to if he has

autism. So you have a good starting point. Denawww.listenbetterwithAIT.com

[Guest guest]

Thanks for this Dena!! My husband and I were extremely skeptical! But we were desperate to try just about anything. Shes been off since January and I have to say she is doing far better than she was in January. She has gotten gluten accidentally several times and that one dose of gluten put her out for 5 days each time. Emotional, screaming, violent just plan out of sorts. The third time this happened she looked at us and said "I took a cookie, the gluten is doing this!!" We had no idea she even had gotten ahold of gluten. She is SUPER careful about what she eats now. She checks all the ingredients on the packages herself now. Shes more convinced than we are!! She also has severe bowel issues which have increasingly gotten better over time. We still aren't out of the woods with her yet on those, but its better than it has been in four years. All the doctors wanted to do to her was put her on Miralax. They've had her on it for the last four years! And this is the closest shes been to better, we yanked her off miralax and put her on a GF diet. On May 30, 2010, at 4:57 AM, Dena Page wrote:

Be careful about making sweeping statements like "it never works, they always still need the support". Especially if it's based primarily on one or two kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave up because it was too hard and it didn't work for their daughter. Upon further examination, I discovered what she meant by it was too hard is that her daughter would get up in the middle of the night and climb up to the highest cabinet and 'steal' gluten cereal (this was in Ireland where the prevailing thought is a household is not complete without a box of Wheatabix!). So of course it didn't work for her -- she was never off gluten.

You only need to hear one story about how a child made great improvements off gluten and casein, or even one story where the improvements seemed minor, but when the child accidentally ate some gluten, several months later, his symptoms and challenging behaviors went through the roof, to know that there's validity behind it.

And of course, you're absolutely right -- if you know your child's intolerant to a food, you take it out of his/her diet. Fortunately, research shows that gluten and casein are likely foods your child's intolerant to if he has autism. So you have a good starting point.

Denawww.listenbetterwithAIT.com

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs

[Guest guest]

I dont think anyone, even me is looking to cure an Autistic child. I love my daughter. But there has to be some balance. Some kids on the spectrum are violent. Mine being one of those. Its a spectrum and its hard to function even physically or emotionally yourself when you have a child that melts down into a violent rages every day. But then you take one chance by trying a GF diet and your kid changes over night. For CAITLIN (not saying everyone I'm saying her) She has had sensitivity to food since she was a baby. So its not like we woke up one day and said, oh yea she can't have gluten. A GF diet is going to cure her. But every time the kid had milk she would rage for 4 hours all day. We took her into the doctors office at 18 months old and the Pediatrician couldn't believe it was the same child she had seen since birth. Pounding her head biting her hands till they would bleed. There may be a correlation between some of the extreme behaviors and gluten. I just dont think people can make blanket statements that say GF is for ALL autistic kids or that GF sensitivity doesn't exist in Autistic kids.I dont think that the entire spectrum is affected by Gluten. I just know what I've seen in my own child and I refuse to listen to these so called experts that also tried to diagnose my 6 yo at the time as Bipolar. Doctors are in a " medical practice" and not EVERY child falls into the same box. Just my .02 On May 30, 2010, at 4:22 PM, K wrote:

Hi Dena,

I must have missed a large part of this--so I aplogize if what I say isn't extremely relevant.

I was just a bit aghast when I read that autism kids have seperate nutritional issues like the gluten thing.

We just found out that my son has Aspergers----and he only has a few of the many signs of aspergers--I was under the impression that Autism is a HUGE umbrella--and though our children may share SOME similiarities to others, it's not something you can just broadly categorize. Low functioning autism seems VERY different than Aspergers.

Am I ignorant in thinking this just seems too easy to think the entire spectrum could be affected by this gluten issue?

Before we found out about Aspergers, we were told he had ADD--and we tried every type nutritional thing (no artificial dyes, etc), it didn't change anything with him. So I'm not sure my son's social issues are going to be helped in any form by a gluten free diet. If they will, I'm in--but it seems to me, he just needs social training right now, not for the rest of his life. My son is smart and can learn anything in his own time. I'm expecting that he will not be dependent the rest of his life and need support forever.

I mean what is NORMAL? Who doesn't have differences? Seriously, everyone could be labeled somewhere with something. So to me, I don't want to CURE my kid--cause I think his eccentricities are awesome. I don't even like average things, I like different. So I greatly believe in helping my child find his place in life and help him meet the goals he has, and part of that will be social training. He doesn't have to change to fit in, he just has to understand how to use social skills to fit in a certain place at a certain time. I think I must have Aspergers, because I'm 35 years old and just figuring out that part!

Is there research somewhere that shows children with Aspergers benefit greatly from this type of diet? I just err on the side of caution when someone mentions miracles or cures for my Aspie. What the hell? I don't want my kid CURED--what does that mean anyway? Read Temple--she doesn't believe in CURING autistic kids either!

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

( ) Re: Bad research on how GFCF does not work and our experienceBe careful about making sweeping statements like "it never works, they always still need the support". Especially if it's based primarily on one or two kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave up because it was too hard and it didn't work for their daughter. Upon further examination, I discovered what she

meant by it was too hard is that her daughter would get up in the middle of the night and climb up to the highest cabinet and 'steal' gluten cereal (this was in Ireland where the prevailing thought is a household is not complete without a box of Wheatabix!). So of course it didn't work for her -- she was never off gluten.You only need to hear one story about how a child made great improvements off gluten and casein, or even one story where the improvements seemed minor, but when the child accidentally ate some gluten, several months later, his symptoms and challenging behaviors went through the roof, to know that there's validity behind it. And of course, you're absolutely right -- if you know your child's intolerant to a food, you take it out of his/her diet. Fortunately, research shows that gluten and casein are likely foods your child's intolerant to if he has

autism. So you have a good starting point. Denawww.listenbetterwithAIT.com

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs

[Guest guest]

Okay so this just affects some children--I get that--I just thought it was being said this affected all the autism spectrum. Which I didn't get.

We are new to this game....like I said, my son doesn't share some characteristics. He's not violent in any way or doesn't have meltdowns like that. He's just better explained as a bit eccentric, naive, and slow learning on the social cues, expressions, etc.

So I was trying to figure out how something affects the ENTIRE spectrum which seems super large and varying to me.

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

Hi Dena,

I must have missed a large part of this--so I aplogize if what I say isn't extremely relevant.

I was just a bit aghast when I read that autism kids have seperate nutritional issues like the gluten thing.

We just found out that my son has Aspergers--- -and he only has a few of the many signs of aspergers--I was under the impression that Autism is a HUGE umbrella--and though our children may share SOME similiarities to others, it's not something you can just broadly categorize. Low functioning autism seems VERY different than Aspergers.

Am I ignorant in thinking this just seems too easy to think the entire spectrum could be affected by this gluten issue?

Before we found out about Aspergers, we were told he had ADD--and we tried every type nutritional thing (no artificial dyes, etc), it didn't change anything with him. So I'm not sure my son's social issues are going to be helped in any form by a gluten free diet. If they will, I'm in--but it seems to me, he just needs social training right now, not for the rest of his life. My son is smart and can learn anything in his own time. I'm expecting that he will not be dependent the rest of his life and need support forever.

I mean what is NORMAL? Who doesn't have differences? Seriously, everyone could be labeled somewhere with something. So to me, I don't want to CURE my kid--cause I think his eccentricities are awesome. I don't even like average things, I like different. So I greatly believe in helping my child find his place in life and help him meet the goals he has, and part of that will be social training. He doesn't have to change to fit in, he just has to understand how to use social skills to fit in a certain place at a certain time. I think I must have Aspergers, because I'm 35 years old and just figuring out that part!

Is there research somewhere that shows children with Aspergers benefit greatly from this type of diet? I just err on the side of caution when someone mentions miracles or cures for my Aspie. What the hell? I don't want my kid CURED--what does that mean anyway? Read Temple--she doesn't believe in CURING autistic kids either!

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

( ) Re: Bad research on how GFCF does not work and our experienceBe careful about making sweeping statements like "it never works, they always still need the support". Especially if it's based primarily on one or two kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave up because it was too hard and it didn't work for their daughter. Upon further examination, I discovered what she meant by it was too hard is that her daughter would get up in the middle of the night

and climb up to the highest cabinet and 'steal' gluten cereal (this was in Ireland where the prevailing thought is a household is not complete without a box of Wheatabix!). So of course it didn't work for her -- she was never off gluten.You only need to hear one story about how a child made great improvements off gluten and casein, or even one story where the improvements seemed minor, but when the child accidentally ate some gluten, several months later, his symptoms and challenging behaviors went through the roof, to know that there's validity behind it. And of course, you're absolutely right -- if you know your child's intolerant to a food, you take it out of his/her diet. Fortunately, research shows that gluten and casein are likely foods your child's intolerant to if he has autism. So you have a good starting point. Denawww.listenbetterwithAIT.com

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs

[Guest guest]

This is so stupid!!!! That's not a GFCF diet, that's just eating less gluten and

casein... No time for the immune system to come down. My daughter was on it for

over a year (maybe years?) before I " tested " her.... then sent her off to

preschool. Heh heh... What a disaster! They called me b/c they were sure she was

sick and they kept taking her temperature. I fessed up the next day and I think

that might have planted a seed in their head that I'm not as crazy as they think

I am. I'm the only Mom who does this diet in her classes most of the time!

Jen

DD 5yo Aspie

Congenital LD

________________________________

From: april_qian <april_qian@...>

Sent: Fri, May 21, 2010 12:12:25 PM

Subject: ( ) Bad research on how GFCF does not work and our

experience

A relative of mine sent me this

http://www.webmd.com/brain/autism/news/20100519/autism-diet-may-not-improve-symp\

toms

The small group of ASD kids were observed for 18 weeks while on the diet. Every

week a " challenge snack " (with GC) would be given to compare if any difference.

It wasn't done so some kids consistently got the " challenge " snacks to compare

with the kids that were given placebos. It said " The routine continued until

each child received each snack three times over 12 weeks. "

With my ds, it took about 3 months on the diet to really see a different. Within

that time NO trace of any gluten or casein. If you give them wheat every week

then you are NOT on the diet. It's ridiculous.

There is a lot of half-cooked research out there, and we don't have the time to

read all the " what doesn't work " stuff. I saw a clear difference in my ds'

behavior when he was back on wheat and diary for 2 weeks just so we could get

blood tests done. He was not sleeping well, was constipated, and acted like he

was behind a mental fog and couldn't/wouldn't talk to us.

This week after we've been back on GFCF diet, my ds has been really in context,

affectionate, open and chatty. He told us what happened at school FOR THE FIRST

TIME. He also retells and summarizes stories we have read together.

[Guest guest]

I want to clarify my original intent on sending this.

I totally agree and so far there is no scientific proof GFCF makes a difference

for ALL autistic kids. We strictly followed the diet, KNOWING it might not make

any difference. We saw gradual change, and very distinct change when we put our

ds back on GC for 2 weeks. He is more communicative and in context, but he's

still him:- writing and drawing all the time and fascinated with numbers,

letters and electronics. It's not a cure and we didn't expect so. We still

attend special ed for ASD, etc.

We didn't do any of the potentially harmful treatments like chelation, massive

vitamins. We wanted to see if the least pervasive treatment, i.e. diet would

change anything and it did.

Generally I think it's true what the docs say about ASD, " Genetics load the gun,

environment pulls the trigger. " We cannot eliminate the geeky genes now (too

late for that), but we should try and find the most harmful thing in the

environment and eliminate that for our kids who for one reason or another may

react more to these than others.

I think the medical and scientific society should try to understand how the GCFC

works, how long it takes, what might or might not cause something, etc., when

they go ahead and spend all the money and time on research. If it doesn't work

for some, why, if it does work for some others, why. That's the kind of research

we need. Why are they still trying to find IF it works, just read the thousands

of parent stories that it did for them, for decades.

[Guest guest]

I would buy the cure in a heartbeat. Less than a heartbeat. It does

not mean I don't love my kids either. If the diet is helping with

things, then you ought to do that and stick with it.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: Bad research on how GFCF does not work

and our experience

Be careful about making sweeping statements like " it never works, they

always still need the support " .  Especially if it's based primarily on

one or two kids you've known.

I had a mom tell me they tried GF/CF for 6 months and finally gave up

because it was too hard and it didn't work for their daughter.  Upon

further examination, I discovered what she meant by it was too hard is

that her daughter would get up in the middle of the night and climb up

to the highest cabinet and 'steal' gluten cereal (this was in Ireland

where the prevailing thought is a household is not complete without a

box of Wheatabix!).  So of course it didn't work for her -- she was

never off gluten.

You only need to hear one story about how a child made great

improvements off gluten and casein, or even one story where the

improvements seemed minor, but when the child accidentally ate some

gluten, several months later, his symptoms and challenging behaviors

went through the roof, to know that there's validity behind it. 

And of course, you're absolutely right -- if you know your child's

intolerant to a food, you take it out of his/her diet.  Fortunately,

research shows that gluten and casein are likely foods your child's

intolerant to if he has autism.  So you have a good starting point. 

Dena

www.listenbetterwithAIT.com

“Here's to the crazy ones, the misfits, the rebels, the troublemakers,

the round pegs in the square holes... the ones who see things

differently -- they're not fond of rules... You can quote them,

disagree with them, glorify or vilify them, but the only thing you

can't do is ignore them because they change things... they push the

human race forward, and while some may see them as the crazy ones, we

see genius, because the ones who are crazy enough to think that they

can change the world, are the ones who do.â€Â   -  Steve Jobs

[Guest guest]

Kristal,

It was being said that this affects all kids with autism and that all

kids with autism are " sensitive " to specific foods and ingredients.

And that is not true. Some people believe that their kids have a

digestive problem related to specific foods and they feel the diet

helps that. I am sure if one is sensitive to food products,

eliminating them from ones diet will help things - across the whole

population, not just people with autism. Also, eating well helps

everyone function better no matter if you have a neurological

disability or not! That's common sense!

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: Bad research on how GFCF does not work

and our experience

Be careful about making sweeping statements like " it never works, they

always still need the support " .  Especially if it's based primarily on

one or two kids you've known.

I had a mom tell me they tried GF/CF for 6 months and finally gave up

because it was too hard and it didn't work for their daughter.  Upon

further examination, I discovered what she meant by it was too hard is

that her daughter would get up in the middle of the night and climb up

to the highest cabinet and 'steal' gluten cereal (this was in Ireland

where the prevailing thought is a household is not complete without a

box of Wheatabix!).  So of course it didn't work for her -- she was

never off gluten.

You only need to hear one story about how a child made great

improvements off gluten and casein, or even one story where the

improvements seemed minor, but when the child accidentally ate some

gluten, several months later, his symptoms and challenging behaviors

went through the roof, to know that there's validity behind it. 

And of course, you're absolutely right -- if you know your child's

intolerant to a food, you take it out of his/her diet.  Fortunately,

research shows that gluten and casein are likely foods your child's

intolerant to if he has autism.  So you have a good starting point. 

Dena

www.listenbetterwithAIT.com

“Here's to the crazy ones, the misfits, the rebels, the troublemakers,

the round pegs in the square holes... the ones who see things

differently -- they're not fond of rules... You can quote them,

disagree with them, glorify or vilify them, but the only thing you

can't do is ignore them because they change things... they push the

human race forward, and while some may see them as the crazy ones, we

see genius, because the ones who are crazy enough to think that they

can change the world, are the ones who do.â€Â   -  Steve Jobs

[Guest guest]

I say do whatever helps your child. it's what any parent would do. We all love our kids or we wouldn't be on this group, for sure.

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

Hi Dena,I must have missed a large part of this--so I aplogize if what I say isn't extremely relevant.I was just a bit aghast when I read that autism kids have seperate nutritional issues like the gluten thing.We just found out that my son has Aspergers----and he only has a few of the

many signs of aspergers--I was under the impression that Autism is a HUGE umbrella--and though our children may share SOME similiarities to others, it's not something you can just broadly categorize. Low functioning autism seems VERY different than Aspergers.Am I ignorant in thinking this just seems too easy to think the entire spectrum could be affected by this gluten issue?Before we found out about Aspergers, we were told he had ADD--and we tried every type nutritional thing (no artificial dyes, etc), it didn't change anything with him. So I'm not sure my son's social issues are going to be helped in any form by a gluten free diet. If they will, I'm in--but it seems to me, he just needs social training right now, not for the rest of his life. My son is smart and can learn anything in his own time. I'm expecting that he will not be dependent the rest of his life and need support forever.I mean

what is NORMAL? Who doesn't have differences? Seriously, everyone could be labeled somewhere with something. So to me, I don't want to CURE my kid--cause I think his eccentricities are awesome. I don't even like average things, I like different. So I greatly believe in helping my child find his place in life and help him meet the goals he has, and part of that will be social training. He doesn't have to change to fit in, he just has to understand how to use social skills to fit in a certain place at a certain time. I think I must have Aspergers, because I'm 35 years old and just figuring out that part! Is there research somewhere that shows children with Aspergers benefit greatly from this type of diet? I just err on the side of caution when someone mentions miracles or cures for my Aspie. What the hell? I don't want my kid CURED--what does that mean anyway? Read Temple--she doesn't believe in

CURING autistic kids either! Purrs & Kisses,Kristal of Digi KittyThe Kitty who loves Digi!Designer for the VDBC "More" Team - you can see my designs HERE!!! ( ) Re: Bad research on how GFCF does not workand our experienceBe careful about making sweeping statements like "it never works, theyalways still need the support". Especially if it's based primarily onone or two

kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave upbecause it was too hard and it didn't work for their daughter. Uponfurther examination, I discovered what she meant by it was too hard isthat her daughter would get up in the middle of the night and climb upto the highest cabinet and 'steal' gluten cereal (this was in Irelandwhere the prevailing thought is a household is not complete without abox of Wheatabix!). So of course it didn't work for her -- she wasnever off gluten.You only need to hear one story about how a child made greatimprovements off gluten and casein, or even one story where theimprovements seemed minor, but when the child accidentally ate somegluten, several months later, his symptoms and challenging behaviorswent through the roof, to know that there's validity behind it. And of course, you're absolutely right -- if

you know your child'sintolerant to a food, you take it out of his/her diet. Fortunately,research shows that gluten and casein are likely foods your child'sintolerant to if he has autism. So you have a good starting point. Denawww.listenbetterwithAIT.com“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs

[Guest guest]

Okay i thought I read right the first time. I don't agree anything is the WHOLE spectrum, so that's why it sounded fishy--like a cure all.

However, i also agree like you said that everyone will do what helps their kids--I know I sure do and will. lol

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

Hi Dena,I must have missed a large part of this--so I aplogize if what I say isn't extremely relevant.I was just a bit aghast when I read that autism kids have seperate nutritional issues like the gluten thing.We just found out

that my son has Aspergers--- -and he only has a few of the many signs of aspergers--I was under the impression that Autism is a HUGE umbrella--and though our children may share SOME similiarities to others, it's not something you can just broadly categorize. Low functioning autism seems VERY different than Aspergers.Am I ignorant in thinking this just seems too easy to think the entire spectrum could be affected by this gluten issue?Before we found out about Aspergers, we were told he had ADD--and we tried every type nutritional thing (no artificial dyes, etc), it didn't change anything with him. So I'm not sure my son's social issues are going to be helped in any form by a gluten free diet. If they will, I'm in--but it seems to me, he just needs social training right now, not for the rest of his life. My son is smart and can learn anything in his own time. I'm expecting that he will not be dependent

the rest of his life and need support forever.I mean what is NORMAL? Who doesn't have differences? Seriously, everyone could be labeled somewhere with something. So to me, I don't want to CURE my kid--cause I think his eccentricities are awesome. I don't even like average things, I like different. So I greatly believe in helping my child find his place in life and help him meet the goals he has, and part of that will be social training. He doesn't have to change to fit in, he just has to understand how to use social skills to fit in a certain place at a certain time. I think I must have Aspergers, because I'm 35 years old and just figuring out that part! Is there research somewhere that shows children with Aspergers benefit greatly from this type of diet? I just err on the side of caution when someone mentions miracles or cures for my Aspie. What the hell? I don't want my kid CURED--what does

that mean anyway? Read Temple--she doesn't believe in CURING autistic kids either! Purrs & Kisses,Kristal of Digi KittyThe Kitty who loves Digi!Designer for the VDBC "More" Team - you can see my designs HERE!!! ( ) Re: Bad research on how GFCF does not workand our experienceBe careful about making sweeping statements like "it never works, theyalways still need the support". Especially if it's based primarily onone or two kids you've known.I had a mom tell me they tried GF/CF for 6 months and finally gave upbecause it was too hard and it didn't work for their daughter. Uponfurther examination, I discovered what she meant by it was too hard isthat

her daughter would get up in the middle of the night and climb upto the highest cabinet and 'steal' gluten cereal (this was in Irelandwhere the prevailing thought is a household is not complete without abox of Wheatabix!). So of course it didn't work for her -- she wasnever off gluten.You only need to hear one story about how a child made greatimprovements off gluten and casein, or even one story where theimprovements seemed minor, but when the child accidentally ate somegluten, several months later, his symptoms and challenging behaviorswent through the roof, to know that there's validity behind it. And of course, you're absolutely right -- if you know your child'sintolerant to a food, you take it out of his/her diet. Fortunately,research shows that gluten and casein are likely foods your child'sintolerant to if he has autism. So you have a good starting

point. Denawww.listenbetterwithAIT.com“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs

[Guest guest]

It's because nobody can prove it's working. that is why they are still

trying to prove it works. If all these parents swear that it is a fix,

cure, whatever, you'd think there would be some studies backing it up

by now. I'm surprised there aren't. Before they can study " why " it

works, they'd have to show that it does work outside of people just

saying, " yes, it works. " Things like that should be provable. Someone

else posted saying that their systems have to 'come down from "

something before they can say it works or doesn't work. That goes back

to the study you posted showing it does not work. If it had changed

behavior, it would be obvious it was affecting it. You can wait a year

or two until the kid has a bad day and then finally say, " Aha! It's

the bread! " but I don't buy that this has now proven that it causes

the behaviors. I still remember working with a family where they did

the diet and believed diet had a great effect on the child's behavior.

And I would go to the school meetings and all I'd hear was, " Did he eat

a french fry last thursday? " Every behavior he had was blamed on him

eating something not allowed on the diet. Needless to say, nobody had

to bother teaching him much since the behaviors were blamed on the

diet. No behavior plan necessary other than to yell, " Did you let him

have french fries? " lol. It used to make me crazy. Have at the diet,

I felt. But let's deal with what is right now irregardless of his

french fry obsession people! Augh!

There are a lot of therapies and scams out there saying that it is

proven to work - to cure, to improve all sorts of things. Then the kid

has a bad day or a good day and it's credited to whatever the current

pill or diet or therapy is being used. I would like to see long term

studies that show improvement over a long period of time as well.

You'd think with all these people swearing the diet was a cure that

there would be these studies well into dozens of years to show how it

works so well for these kids. But unfortunately, there are not. Most

of the time, these therapies and such have strangely conducted studies

that are designed to show what they want instead of studying what works

without a hidden agenda. That just is a shame for all the kids and

parents who need help, IMO.

Roxanna

Whenever I feel blue, I start breathing again.

Re: ( ) Bad research on how GFCF does not work

and our experience

I want to clarify my original intent on sending this.

I totally agree and so far there is no scientific proof GFCF makes a

difference for ALL autistic kids. We strictly followed the diet,

KNOWING it might not make any difference. We saw gradual change, and

very distinct change when we put our ds back on GC for 2 weeks. He is

more communicative and in context, but he's still him:- writing and

drawing all the time and fascinated with numbers, letters and

electronics. It's not a cure and we didn't expect so. We still attend

special ed for ASD, etc.

We didn't do any of the potentially harmful treatments like chelation,

massive vitamins. We wanted to see if the least pervasive treatment,

i.e. diet would change anything and it did.

Generally I think it's true what the docs say about ASD, " Genetics load

the gun, environment pulls the trigger. " We cannot eliminate the geeky

genes now (too late for that), but we should try and find the most

harmful thing in the environment and eliminate that for our kids who

for one reason or another may react more to these than others.

I think the medical and scientific society should try to understand how

the GCFC works, how long it takes, what might or might not cause

something, etc., when they go ahead and spend all the money and time on

research. If it doesn't work for some, why, if it does work for some

others, why. That's the kind of research we need. Why are they still

trying to find IF it works, just read the thousands of parent stories

that it did for them, for decades.