RE: GFCF, soy free diet

[Guest guest]

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter. We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes. Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF. While it was hard in public situations we found replacements for everything she ate. She was fine with the diet but once again no results.

I have friends with autistic kids who swear it helps there kids. I wish it helped mine. With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much. The girl brain and body is far more complex from what my doctor tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

By the way I did both diets religiously for 8 months. Good luck to you. If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det@...

"America's Most Wanted" on FOX at 9 pm ET/Saturdays

Check out www.amw.com---

Subject: GFCF, soy free dietTo: sList Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research

that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

The diet seems to work best for kids that have gastro-intestinal problems, allergies or intermittent ADD. (When my son was most reactive, he would be calm one minute and literally jumping up and down on a dinner table less than a minute after eating a tomato.) We had no trouble telling whether he was allergic.

If she has had problems with eczema, mouth sores, diarrhea, etc., those would be other indications. Blood tests that your pediatrician can run would indicate whether your daughter has food allergies.

Good luck,

Hilda

-----Original Message-----From: sList [mailto:sList ] On Behalf Of walshed63Sent: Monday, September 14, 2009 4:12 PMTo: sList Subject: GFCF, soy free diet

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

To my best knowledge there is no serious research on the effects

of the GFCF diet on kids with autism. I heard anecdotal evidence both in favor

of and against the diet. I can tell you that my son was on it and the change

was so miniscule that it was not worth it. We saw a very small reduction in

self stimulating behavior. I took him off the diet gradually adding one component

at a time and I did not see any adverse effects. I myself did the diet with him

and I am still on it. It helped a chronic pain issue that I have had for years

and there was no medical treatment for (other than pain killers). What I

am saying is that if you do it gradually and monitor closely you will be able

to tell what is the effect on your child and make decisions accordingly.

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

From:

sList [mailto:sList ] On Behalf

Of walshed63

Sent: Monday, September 14, 2009 4:12 PM

To: sList

Subject: GFCF, soy free diet

My seven year old non-verbal daughter with

autism has been on the diet since diagnosis at age two. She has made very

little progress in her speech and writing skills, although her ability to

function in a classroom and in public situations has greatly improved over

time.

When she was first placed on the diet, I believe there was some improvement in

her eye contact, etc. However, I'm not convinced it is doing her any good at

this point.

She is the only kid of over twenty in her cluster on the diet, which creates

big disruptive problems at meal and snack time. She is very underweight and is

mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off

her diet, and I have not seen it affect her behavior.

Does anyone have any experience with taking their child off the diet and the

results it produced?

Can anyone point me to any good research that has been done on this subject.

I should mention that her teacher doesn't feel she is benefiting from the diet

and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

and walshed63,

 

There is no credible scientific evidence to suggest the effectiveness of any dietary intervention as an autism treatment. There is evidence to suggest its effectiveness as a treatment for celiac disease and Duhring's disease, but since both of these are wheat-triggered autoimmune disorders, this is perhaps unsurprising.

 

And, as I suspect that some proponent of CAM will reply by pointing to the Knivsberg and Elder studies -- I'm sorry, but no, they don't qualify as " credible scientific evidence " . Knivsberg's RCT wasn't exactly poorly done, but it had an N of 20 and didn't control for placebo effects. Sorry, but while that may be enough to qualify as preliminary evidence on a grant application, it's nowhere near enough to count as credible evidence for a clinical intervention.

 

And Elder's study didn't even control for maturation while working with young children. Gyah.ly, I suggest reading the most recent Cochraine review on the topic (see http://www.ncbi.nlm.nih.gov/pubmed/18425890 for full citation and summary).

 

Actually, the Cochraine review database is just a good source in general -- although be forewarned that they use state-of-the-art techniques for meta-analysis, meaning that the articles can get highly technical at times.

 

-- Cheezem

aspieperspective.blogspot.com

 

 

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter.  We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes.  Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF.    While it was hard in public situations we found replacements for everything she ate.  She was fine with the diet but once again no results.

 

I have friends with autistic kids who swear it helps there kids.  I wish it helped mine.  With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much.  The girl brain and body is far more complex from what my doctor tells me.  I wish it would have helped mine.  Believe me.

 

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

 

By the way I did both diets religiously for 8 months.  Good luck to you.  If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det@... 

" America's Most Wanted " on FOX at 9 pm ET/Saturdays

Check out www.amw.com---

Subject: GFCF, soy free diet

To: sList Date: Monday, September 14, 2009, 4:12 PM

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

-- -- Cheezemaspieperspective.blogspot.com

[Guest guest]

As a correction to what I wrote below (and proof that I shouldn't be writing about scientific methodology at eleven at night), I was confusing the Knivsberg and Elder studies when I spoke about maturation... and am aware that the randomization and comparison inherent in an RCT could be viewed as a control for maturational effects. Knivsberg simply didn't control adequately for it (c.f. p. 254).

 

The Elder study's flaws were primarily in the areas of small N (15), unreported (and therefore inadequate for purpose of analysis) allocation concealment, and failure to control for the placebo effect.

 

-- Cheezem

aspieperspective.blogspot.com 

and walshed63,

 

There is no credible scientific evidence to suggest the effectiveness of any dietary intervention as an autism treatment. There is evidence to suggest its effectiveness as a treatment for celiac disease and Duhring's disease, but since both of these are wheat-triggered autoimmune disorders, this is perhaps unsurprising.

 

And, as I suspect that some proponent of CAM will reply by pointing to the Knivsberg and Elder studies -- I'm sorry, but no, they don't qualify as " credible scientific evidence " . Knivsberg's RCT wasn't exactly poorly done, but it had an N of 20 and didn't control for placebo effects. Sorry, but while that may be enough to qualify as preliminary evidence on a grant application, it's nowhere near enough to count as credible evidence for a clinical intervention.

 

And Elder's study didn't even control for maturation while working with young children. Gyah.ly, I suggest reading the most recent Cochraine review on the topic (see http://www.ncbi.nlm.nih.gov/pubmed/18425890 for full citation and summary).

 

Actually, the Cochraine review database is just a good source in general -- although be forewarned that they use state-of-the-art techniques for meta-analysis, meaning that the articles can get highly technical at times.

 

-- Cheezem

aspieperspective.blogspot.com

 

 

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter.  We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes.  Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF.    While it was hard in public situations we found replacements for everything she ate.  She was fine with the diet but once again no results.

 

I have friends with autistic kids who swear it helps there kids.  I wish it helped mine.  With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much.  The girl brain and body is far more complex from what my doctor tells me.  I wish it would have helped mine.  Believe me.

 

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

 

By the way I did both diets religiously for 8 months.  Good luck to you.  If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det@... 

" America's Most Wanted " on FOX at 9 pm ET/Saturdays

Check out www.amw.com---

Subject: GFCF, soy free diet

To: sList Date: Monday, September 14, 2009, 4:12 PM

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

-- -- Cheezemaspieperspective.blogspot.com

-- -- Cheezemaspieperspective.blogspot.com

[Guest guest]

It all depends if your child has gastrointestinal issues or not.

Our son does, which is why the GF/CF diet worked for him, to the point he's no

longer in pain (which triggered a good number of behaviors). Since he is

non-verbal, it was difficult to pinpoint what was the root of the problem. His

pediatric GI specialist is Dr. Tano, whom, although is not so much 'on board'

with the GF/CF diet (doesn't quite agree with us that casein is also an issue,

but our son simply gets sick if he ingests milk), he helped us manage our son's

severe gluten intolerance. We've seen a huge improvement in his quality of life,

and the repetitive behaviors stopped, which is why we continue him on the diet.

We do use soy with him, since he doesn't seem to react negatively to.

As you know with autism, there is no one stop solution for all the situations

our children face. The diet is one of the options out there, if it works, great,

if it doesn't, you gave it a try.

>

>

>

> Subject: GFCF, soy free diet

> To: sList

> Date: Monday, September 14, 2009, 4:12 PM

>

>

>  

>

>

>

> My seven year old non-verbal daughter with autism has been on the diet since

diagnosis at age two. She has made very little progress in her speech and

writing skills, although her ability to function in a classroom and in public

situations has greatly improved over time.

>

> When she was first placed on the diet, I believe there was some improvement in

her eye contact, etc. However, I'm not convinced it is doing her any good at

this point.

>

> She is the only kid of over twenty in her cluster on the diet, which creates

big disruptive problems at meal and snack time. She is very underweight and is

mostly interested in foods she sees that she can't have.

>

> She is often successful at school and in public at grabbing and eating food

off her diet, and I have not seen it affect her behavior.

>

> Does anyone have any experience with taking their child off the diet and the

results it produced?

>

> Can anyone point me to any good research that has been done on this subject.

>

> I should mention that her teacher doesn't feel she is benefiting from the diet

and in fact it is creating educational problems because of its exclusiveness.

>

[Guest guest]

For my son...Sent from my iPhone

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter. We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes. Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF. While it was hard in public situations we found replacements for everything she ate. She was fine with the diet but once again no results.

I have friends with autistic kids who swear it helps there kids. I wish it helped mine. With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much. The girl brain and body is far more complex from what my doctor tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

By the way I did both diets religiously for 8 months. Good luck to you. If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det

"America's Most Wanted" on FOX at 9 pm ET/Saturdays

Check out www.amw.com--- On Mon, 9/14/09, walshed63 <walshed63> wrote:

From: walshed63 <walshed63>Subject: GFCF, soy free dietTo: sList Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research

that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

I ALSO HAD MY DAUGHTER ON THE DIET (RELIGIOUSLY F0R 6 MONTHS) AND SAW

LITTLE IF ANY IMPROVEMENT. HOWEVER, I WAS RELUCTANT AS WELL TO TAKE HER OFF BECAUSE

I HAD HEARD THAT A MAJOR REGRESSION COULD OCCUR. FORTUNAATELY, THAT WAS NOT THE

CASE AND SHE MAINATAINED AT THE SAME LEVEL ONCE OFF THE DIET. GOOD LUCK, I

KNOW IT IS A SCARY DECISION TO MAKE.

Cohane, LCSW

creating connections and strengthening families by providing

developmental-behavioral interventions and psychotherapy services

Cohane@...

From:

sList [mailto:sList ] On Behalf Of

Sent: Monday, September 14, 2009

8:30 PM

To: sList

Subject: Re: GFCF,

soy free diet

I have tired the diet twice...first with my entire

family...3 girls and a husband, and then second time around with just my

autistic daughter. We did GF/CF the first time for the whole family

with no success...took a break and didn't see any changes. Then, felt

guilty and tried it with biomedical and GI testing and decided to try

GF/CF/SF/YF. While it was hard in public situations we

found replacements for everything she ate. She was fine with the diet

but once again no results.

I have friends with autistic kids who swear it helps

there kids. I wish it helped mine. With girls who are autistic,

and mine is also apraxic, I have read the diets don't help girls as

much. The girl brain and body is far more complex from what my doctor

tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are

parents far more experience than me and support groups on s List that

may be able to shed some light.

By the way I did both diets religiously for 8

months. Good luck to you. If you find something that works and

helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det

" America's Most

Wanted " on FOX at 9 pm ET/Saturdays

Check out www.amw.com

From: walshed63 <walshed63>

Subject: GFCF, soy free diet

To: sList

Date: Monday, September 14, 2009, 4:12 PM

My seven year old

non-verbal daughter with autism has been on the diet since diagnosis at age

two. She has made very little progress in her speech and writing skills,

although her ability to function in a classroom and in public situations has

greatly improved over time.

When she was first placed on the diet, I believe there was some improvement

in her eye contact, etc. However, I'm not convinced it is doing her any good

at this point.

She is the only kid of over twenty in her cluster on the diet, which creates

big disruptive problems at meal and snack time. She is very underweight and

is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food

off her diet, and I have not seen it affect her behavior.

Does anyone have any experience with taking their child off the diet and the

results it produced?

Can anyone point me to any good research that has been done on this subject.

I should mention that her teacher doesn't feel she is benefiting from the

diet and in fact it is creating educational problems because of its

exclusiveness.

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.409 / Virus Database: 270.13.96/2369 - Release Date: 09/14/09 11:36:00

[Guest guest]

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before. My son is mostly gluten free, with the exception of maybe 2 small cheats. I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel. Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot. He protests about it but we try to explain why we are doing it--to be healthier, all of us. We did not see any huge gains in language or social whatever. What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better. When we feel better, we act better. I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time. Again, he feels better. I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet. It is healthier and I want us all to be healthier. I lost 5 pounds over the summer in minimizing my gluten intake and I feel better. Not bloated at the end of the day, etc... I get that. We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits. Eliminating processed foods as much as possible.

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful.

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

For my son...Sent from my iPhone

On Sep 14, 2009, at 8:29 PM, <detcindyanderson> wrote:

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter. We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes. Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF. While it was hard in public situations we found replacements for everything she ate. She was fine with the diet but once again no results.

I have friends with autistic kids who swear it helps there kids. I wish it helped mine. With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much. The girl brain and body is far more complex from what my doctor tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

By the way I did both diets religiously for 8 months. Good luck to you. If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det

"America's Most Wanted" on FOX at 9 pm ET/Saturdays

Check out www.amw.com--- On Mon, 9/14/09, walshed63 <walshed63> wrote:

From: walshed63 <walshed63>Subject: GFCF, soy free dietTo: sList Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

Shirly,

 

There has been quite a bit of research (one of the reasons why I cited a systematic review and meta-analysis of it), but few RCTs. There's also been a study (Hediger et al., 2008; PubMed ID 17879151) which appears to indicate that a CF diet may impair bone growth in autistic children. I am unaware of other systematic research into

 

Given the tendency of most people to fail to engage in proper critical evaluation of the evidence (to be fair, this requires postgraduate-level understanding of research methodology), there's a lot of bad information and bad advice out there. I've even noticed a good bit of it in this thread of conversation.

 

Two of the problems with anecdotal evidence, especially in the field of autism, are the issues of placebo effects and misattribution of maturational effects. I've seen lots of evidence of both while reading the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8 . It's an utterly brilliant parody of the way that many " nutritionists " practice (see Ben Goldacre's work for detailed discussion of the issues and pseudoscience involved).

 

-- Cheezem

aspieperspective.blogspot.com

 

To my best knowledge there is no serious research on the effects of the GFCF diet on kids with autism. I heard anecdotal evidence both in favor of and against the diet. I can tell you that my son was on it and the change was so miniscule that it was not worth it. We saw a very small reduction in self stimulating behavior. I took him off the diet gradually adding one component at a time and I did not see any adverse effects. I myself did the diet with him and I am still on it. It helped a chronic pain issue that I have had for years and  there was no medical treatment for (other than pain killers). What I am saying is that if you do it gradually and monitor closely you will be able to tell what is the effect on your child and make decisions accordingly.

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of walshed63

Sent: Monday, September 14, 2009 4:12 PMTo: sList Subject: GFCF, soy free diet

 

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time. When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

-- -- Cheezemaspieperspective.blogspot.com

[Guest guest]

Considering that the Autism Research Institute is probably the most infamous purveyer of junk science in regards to autism on the 'net, this is unsurprising. It's also worth noting that sites like that have severe selection bias in testimonials -- the people who don't attribute a benefit (defined or otherwise) to ARI's pseudoscientific and/or unethical interventions are unlikely to visit their website long enough to leave such a testimonial.

 

Additionally, there are a number of issues related to survey design and measurement when compiling a figure like that. I'll have to take a look at how it was done. Suffice it to say, however, that it is not a reliable piece of information.

 

As a final point, it's worth noting that you repeatedly mention eating a generally healthier diet as part of what you're doing. This brings up the question of attribution again -- is it eliminating/reducing gluten and casein from/in the diet or is it just eating a more healthy diet?

 

-- Cheezem

aspieperspective.blogspot.com

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

 

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before.  My son is mostly gluten free, with the exception of maybe 2 small cheats.  I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel.  Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot.  He protests about it but we try to explain why we are doing it--to be healthier, all of us.  We did not see any huge gains in language or social whatever.  What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better.  When we feel better, we act better.  I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time.  Again, he feels better.  I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet.  It is healthier and I want us all to be healthier.  I lost 5 pounds over the summer in minimizing my gluten intake and I feel better.  Not bloated at the end of the day, etc... I get that.  We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits.  Eliminating processed foods as much as possible. 

 

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful. 

 

 

 

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

 

For my son...Sent from my iPhone

 

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter.  We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes.  Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF.    While it was hard in public situations we found replacements for everything she ate.  She was fine with the diet but once again no results.

 

I have friends with autistic kids who swear it helps there kids.  I wish it helped mine.  With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much.  The girl brain and body is far more complex from what my doctor tells me.  I wish it would have helped mine.  Believe me.

 

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

 

By the way I did both diets religiously for 8 months.  Good luck to you.  If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det 

" America's Most Wanted " on FOX at 9 pm ET/Saturdays

Check out www.amw.com---

Subject: GFCF, soy free dietTo: sList

Date: Monday, September 14, 2009, 4:12 PM

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

Hi ,

I agree with most of what you say. Nevertheless, parents who are

willing to be good observers and agree to collect data on their children can

gain a lot of information on what works and what does not. As far as maturation

goes; if your child was on the GFCF diet and certain behaviors were reduced in

frequency and/or intensity and now you take the child off the diet and the

behaviors go back to baseline than certainly maturation was not the issue….(

ideally then you will put them back on the diet to see the behaviors reduced

again).

I do have a graduate degree in clinical nutrition as well as

other degrees and I do agree with you that many so called science based

professions, including MDs do not defer to science in their decision making and

in the way they practice their profession.

Yours

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

From:

sList [mailto:sList ] On Behalf

Of Cheezem

Sent: Wednesday, September 16, 2009 9:37 AM

To: sList

Subject: Re: GFCF, soy free diet

Shirly,

There has been quite a bit of research (one of the reasons

why I cited a systematic review and meta-analysis of it), but few RCTs.

There's also been a study (Hediger et al., 2008; PubMed ID 17879151) which

appears to indicate that a CF diet may impair bone growth in autistic children.

I am unaware of other systematic research into

Given the tendency of most people to fail to engage in

proper critical evaluation of the evidence (to be fair, this requires

postgraduate-level understanding of research methodology), there's a lot

of bad information and bad advice out there. I've even noticed a good bit of it

in this thread of conversation.

Two of the problems with anecdotal evidence, especially

in the field of autism, are the issues of placebo effects and

misattribution of maturational effects. I've seen lots of evidence of

both while reading the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8.

It's an utterly brilliant parody of the way that many " nutritionists "

practice (see Ben Goldacre's work for detailed discussion of the issues and

pseudoscience involved).

-- Cheezem

aspieperspective.blogspot.com

To my best knowledge there is

no serious research on the effects of the GFCF diet on kids with autism. I

heard anecdotal evidence both in favor of and against the diet. I can tell you

that my son was on it and the change was so miniscule that it was not worth it.

We saw a very small reduction in self stimulating behavior. I took him off the

diet gradually adding one component at a time and I did not see any adverse

effects. I myself did the diet with him and I am still on it. It helped a

chronic pain issue that I have had for years and there was no medical

treatment for (other than pain killers). What I am saying is that if you do it

gradually and monitor closely you will be able to tell what is the effect on

your child and make decisions accordingly.

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then

some.

Work:

Fax:

shirly@...

www.shirlygilad.com

From: sList

[mailto:sList ]

On Behalf Of walshed63

Sent: Monday, September 14, 2009 4:12 PM

To: sList

Subject: GFCF, soy free diet

My seven year old non-verbal daughter with autism has been on the diet since

diagnosis at age two. She has made very little progress in her speech and

writing skills, although her ability to function in a classroom and in public

situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in

her eye contact, etc. However, I'm not convinced it is doing her any good at

this point.

She is the only kid of over twenty in her cluster on the diet, which creates

big disruptive problems at meal and snack time. She is very underweight and is

mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off

her diet, and I have not seen it affect her behavior.

Does anyone have any experience with taking their child off the diet and the

results it produced?

Can anyone point me to any good research that has been done on this subject.

I should mention that her teacher doesn't feel she is benefiting from the diet

and in fact it is creating educational problems because of its exclusiveness.

--

-- Cheezem

aspieperspective.blogspot.com

[Guest guest]

Where did you get your information that the ARI is "probably the most infamous purveyor of junk science in regards to autism"?

From: Cheezem

Sent: Wednesday, September 16, 2009 10:23 AM

To: sList

Subject: Re: GFCF, soy free diet

Considering that the Autism Research Institute is probably the most infamous purveyer of junk science in regards to autism on the 'net, this is unsurprising. It's also worth noting that sites like that have severe selection bias in testimonials -- the people who don't attribute a benefit (defined or otherwise) to ARI's pseudoscientific and/or unethical interventions are unlikely to visit their website long enough to leave such a testimonial.

Additionally, there are a number of issues related to survey design and measurement when compiling a figure like that. I'll have to take a look at how it was done. Suffice it to say, however, that it is not a reliable piece of information.

As a final point, it's worth noting that you repeatedly mention eating a generally healthier diet as part of what you're doing. This brings up the question of attribution again -- is it eliminating/reducing gluten and casein from/in the diet or is it just eating a more healthy diet?

-- Cheezem

aspieperspective.blogspot.com

On Wed, Sep 16, 2009 at 6:08 AM, <austintandtbellsouth (DOT) net> wrote:

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before. My son is mostly gluten free, with the exception of maybe 2 small cheats. I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel. Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot. He protests about it but we try to explain why we are doing it--to be healthier, all of us. We did not see any huge gains in language or social whatever. What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better. When we feel better, we act better. I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time. Again, he feels better. I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet. It is healthier and I want us all to be healthier. I lost 5 pounds over the summer in minimizing my gluten intake and I feel better. Not bloated at the end of the day, etc... I get that. We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits. Eliminating processed foods as much as possible.

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful.

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

For my son...Sent from my iPhone

On Sep 14, 2009, at 8:29 PM, <detcindyanderson> wrote:

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter. We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes. Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF. While it was hard in public situations we found replacements for everything she ate. She was fine with the diet but once again no results.

I have friends with autistic kids who swear it helps there kids. I wish it helped mine. With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much. The girl brain and body is far more complex from what my doctor tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

By the way I did both diets religiously for 8 months. Good luck to you. If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det

"America's Most Wanted" on FOX at 9 pm ET/Saturdays

Check out www.amw.com--- On Mon, 9/14/09, walshed63 <walshed63> wrote:

From: walshed63 <walshed63>Subject: GFCF, soy free dietTo: sList Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

Shirley,

 

While it's true that an ABAB reversal design can produce interesting data, it's important to consider certain other issues in implementing one. Blinding and allocation concealment, for instance, are rarely possible, with all of the resultant biases remaining. Consistent implementation is another issue (and no, I don't just mean " cheating " ). Then there's appropriate data collection (and assorted biases), Hawthorne effects, errors of misattribution due to covarying factors (unintentional or otherwise)...

 

The list goes on and on.

 

-- Cheezem

aspieperspective.blogspot.com

Hi ,

 

I agree with most of what you say. Nevertheless, parents who are willing to be good observers and agree to collect data on their children can gain a lot of information on what works and what does not. As far as maturation goes; if your child was on the GFCF diet and certain behaviors were reduced in frequency and/or intensity and now you take the child off the diet and the behaviors go back to baseline than certainly maturation was not the issue….( ideally then you will put them back on the diet to see the behaviors reduced again).

I do have a graduate degree in clinical nutrition as well as other degrees and I do agree with you that many so called science based professions, including MDs do not defer to science in their decision making and in the way they practice their profession.

 

Yours

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of Cheezem

Sent: Wednesday, September 16, 2009 9:37 AMTo: sList Subject: Re: GFCF, soy free diet

 

 

Shirly,

 

There has been quite a bit of research (one of the reasons why I cited a systematic review and meta-analysis of it), but few RCTs. There's also been a study (Hediger et al., 2008; PubMed ID 17879151) which appears to indicate that a CF diet may impair bone growth in autistic children. I am unaware of other systematic research into

 

Given the tendency of most people to fail to engage in proper critical evaluation of the evidence (to be fair, this requires postgraduate-level understanding of research methodology), there's a lot of bad information and bad advice out there. I've even noticed a good bit of it in this thread of conversation.

 

Two of the problems with anecdotal evidence, especially in the field of autism, are the issues of placebo effects and misattribution of maturational effects. I've seen lots of evidence of both while reading the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8 . It's an utterly brilliant parody of the way that many " nutritionists " practice (see Ben Goldacre's work for detailed discussion of the issues and pseudoscience involved).

 

-- Cheezem

aspieperspective.blogspot.com

 

 

To my best knowledge there is no serious research on the effects of the GFCF diet on kids with autism. I heard anecdotal evidence both in favor of and against the diet. I can tell you that my son was on it and the change was so miniscule that it was not worth it. We saw a very small reduction in self stimulating behavior. I took him off the diet gradually adding one component at a time and I did not see any adverse effects. I myself did the diet with him and I am still on it. It helped a chronic pain issue that I have had for years and  there was no medical treatment for (other than pain killers). What I am saying is that if you do it gradually and monitor closely you will be able to tell what is the effect on your child and make decisions accordingly.

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of walshed63

Sent: Monday, September 14, 2009 4:12 PMTo: sList Subject: GFCF, soy free diet

 

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

 

--

-- Cheezemaspieperspective.blogspot.com

-- -- Cheezemaspieperspective.blogspot.com

[Guest guest]

Shirley,

 

While it's true that an ABAB reversal design can produce interesting data, it's important to consider certain other issues in implementing one. Blinding and allocation concealment, for instance, are rarely possible, with all of the resultant biases remaining. Consistent implementation is another issue (and no, I don't just mean " cheating " ). Then there's appropriate data collection (and assorted biases), Hawthorne effects, errors of misattribution due to covarying factors (unintentional or otherwise)...

 

The list goes on and on.

 

-- Cheezem

aspieperspective.blogspot.com

Hi ,

 

I agree with most of what you say. Nevertheless, parents who are willing to be good observers and agree to collect data on their children can gain a lot of information on what works and what does not. As far as maturation goes; if your child was on the GFCF diet and certain behaviors were reduced in frequency and/or intensity and now you take the child off the diet and the behaviors go back to baseline than certainly maturation was not the issue….( ideally then you will put them back on the diet to see the behaviors reduced again).

I do have a graduate degree in clinical nutrition as well as other degrees and I do agree with you that many so called science based professions, including MDs do not defer to science in their decision making and in the way they practice their profession.

 

Yours

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of Cheezem

Sent: Wednesday, September 16, 2009 9:37 AMTo: sList Subject: Re: GFCF, soy free diet

 

 

Shirly,

 

There has been quite a bit of research (one of the reasons why I cited a systematic review and meta-analysis of it), but few RCTs. There's also been a study (Hediger et al., 2008; PubMed ID 17879151) which appears to indicate that a CF diet may impair bone growth in autistic children. I am unaware of other systematic research into

 

Given the tendency of most people to fail to engage in proper critical evaluation of the evidence (to be fair, this requires postgraduate-level understanding of research methodology), there's a lot of bad information and bad advice out there. I've even noticed a good bit of it in this thread of conversation.

 

Two of the problems with anecdotal evidence, especially in the field of autism, are the issues of placebo effects and misattribution of maturational effects. I've seen lots of evidence of both while reading the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8 . It's an utterly brilliant parody of the way that many " nutritionists " practice (see Ben Goldacre's work for detailed discussion of the issues and pseudoscience involved).

 

-- Cheezem

aspieperspective.blogspot.com

 

 

To my best knowledge there is no serious research on the effects of the GFCF diet on kids with autism. I heard anecdotal evidence both in favor of and against the diet. I can tell you that my son was on it and the change was so miniscule that it was not worth it. We saw a very small reduction in self stimulating behavior. I took him off the diet gradually adding one component at a time and I did not see any adverse effects. I myself did the diet with him and I am still on it. It helped a chronic pain issue that I have had for years and  there was no medical treatment for (other than pain killers). What I am saying is that if you do it gradually and monitor closely you will be able to tell what is the effect on your child and make decisions accordingly.

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of walshed63

Sent: Monday, September 14, 2009 4:12 PMTo: sList Subject: GFCF, soy free diet

 

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

 

--

-- Cheezemaspieperspective.blogspot.com

-- -- Cheezemaspieperspective.blogspot.com

[Guest guest]

Austintandt,

 

Do you want evidence that ARI purveys junk science or do you want evidence on ARI's reputation? If the former, I suggest starting with the works of Ben Goldacre, Prometheus (of Photon in the Darkness), Offit, and Orac (of Respectful Insolence). All have done very good, detailed critiques of ARI's " science " . Both other authors and more specific links are available on request.

 

As for the reputation bit, that's a bit harder to demonstrate, especially as Generation Rescue has been catching up with them as of late. Perhaps one of their most infamous pages is this http://www.autism.com/treatable/drug/marijuana_org.htm , in which... well, I suggest you read for yourself. Suffice it to say that while I may be relatively new to this list, I am not new to online discussions of autism. My statements about reputations reflect this.

-- Cheezem

aspieperspective.blogspot.com

 

Where did you get your information that the ARI is " probably the most infamous purveyor of junk science in regards to autism " ?

 

 

 

 

 

From: Cheezem

Sent: Wednesday, September 16, 2009 10:23 AM

To: sList

Subject: Re: GFCF, soy free diet

 

Considering that the Autism Research Institute is probably the most infamous purveyer of junk science in regards to autism on the 'net, this is unsurprising. It's also worth noting that sites like that have severe selection bias in testimonials -- the people who don't attribute a benefit (defined or otherwise) to ARI's pseudoscientific and/or unethical interventions are unlikely to visit their website long enough to leave such a testimonial.

 

Additionally, there are a number of issues related to survey design and measurement when compiling a figure like that. I'll have to take a look at how it was done. Suffice it to say, however, that it is not a reliable piece of information.

 

As a final point, it's worth noting that you repeatedly mention eating a generally healthier diet as part of what you're doing. This brings up the question of attribution again -- is it eliminating/reducing gluten and casein from/in the diet or is it just eating a more healthy diet?

 

-- Cheezem

aspieperspective.blogspot.com

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

 

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before.  My son is mostly gluten free, with the exception of maybe 2 small cheats.  I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel.  Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot.  He protests about it but we try to explain why we are doing it--to be healthier, all of us.  We did not see any huge gains in language or social whatever.  What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better.  When we feel better, we act better.  I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time.  Again, he feels better.  I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet.  It is healthier and I want us all to be healthier.  I lost 5 pounds over the summer in minimizing my gluten intake and I feel better.  Not bloated at the end of the day, etc... I get that.  We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits.  Eliminating processed foods as much as possible. 

 

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful. 

 

 

 

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

 

For my son...Sent from my iPhone

 

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter.  We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes.  Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF.    While it was hard in public situations we found replacements for everything she ate.  She was fine with the diet but once again no results.

 

I have friends with autistic kids who swear it helps there kids.  I wish it helped mine.  With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much.  The girl brain and body is far more complex from what my doctor tells me.  I wish it would have helped mine.  Believe me.

 

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

 

By the way I did both diets religiously for 8 months.  Good luck to you.  If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det 

" America's Most Wanted " on FOX at 9 pm ET/Saturdays

Check out www.amw.com---

Subject: GFCF, soy free dietTo: sList

Date: Monday, September 14, 2009, 4:12 PM

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

Austintandt,

 

Do you want evidence that ARI purveys junk science or do you want evidence on ARI's reputation? If the former, I suggest starting with the works of Ben Goldacre, Prometheus (of Photon in the Darkness), Offit, and Orac (of Respectful Insolence). All have done very good, detailed critiques of ARI's " science " . Both other authors and more specific links are available on request.

 

As for the reputation bit, that's a bit harder to demonstrate, especially as Generation Rescue has been catching up with them as of late. Perhaps one of their most infamous pages is this http://www.autism.com/treatable/drug/marijuana_org.htm , in which... well, I suggest you read for yourself. Suffice it to say that while I may be relatively new to this list, I am not new to online discussions of autism. My statements about reputations reflect this.

-- Cheezem

aspieperspective.blogspot.com

 

Where did you get your information that the ARI is " probably the most infamous purveyor of junk science in regards to autism " ?

 

 

 

 

 

From: Cheezem

Sent: Wednesday, September 16, 2009 10:23 AM

To: sList

Subject: Re: GFCF, soy free diet

 

Considering that the Autism Research Institute is probably the most infamous purveyer of junk science in regards to autism on the 'net, this is unsurprising. It's also worth noting that sites like that have severe selection bias in testimonials -- the people who don't attribute a benefit (defined or otherwise) to ARI's pseudoscientific and/or unethical interventions are unlikely to visit their website long enough to leave such a testimonial.

 

Additionally, there are a number of issues related to survey design and measurement when compiling a figure like that. I'll have to take a look at how it was done. Suffice it to say, however, that it is not a reliable piece of information.

 

As a final point, it's worth noting that you repeatedly mention eating a generally healthier diet as part of what you're doing. This brings up the question of attribution again -- is it eliminating/reducing gluten and casein from/in the diet or is it just eating a more healthy diet?

 

-- Cheezem

aspieperspective.blogspot.com

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

 

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before.  My son is mostly gluten free, with the exception of maybe 2 small cheats.  I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel.  Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot.  He protests about it but we try to explain why we are doing it--to be healthier, all of us.  We did not see any huge gains in language or social whatever.  What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better.  When we feel better, we act better.  I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time.  Again, he feels better.  I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet.  It is healthier and I want us all to be healthier.  I lost 5 pounds over the summer in minimizing my gluten intake and I feel better.  Not bloated at the end of the day, etc... I get that.  We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits.  Eliminating processed foods as much as possible. 

 

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful. 

 

 

 

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

 

For my son...Sent from my iPhone

 

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter.  We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes.  Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF.    While it was hard in public situations we found replacements for everything she ate.  She was fine with the diet but once again no results.

 

I have friends with autistic kids who swear it helps there kids.  I wish it helped mine.  With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much.  The girl brain and body is far more complex from what my doctor tells me.  I wish it would have helped mine.  Believe me.

 

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

 

By the way I did both diets religiously for 8 months.  Good luck to you.  If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det 

" America's Most Wanted " on FOX at 9 pm ET/Saturdays

Check out www.amw.com---

Subject: GFCF, soy free dietTo: sList

Date: Monday, September 14, 2009, 4:12 PM

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

Very true . Nevertheless, with the lack of good solid

research all we can do is the best we can to obtain information of what helps

our individual kids.

Shirly

From:

sList [mailto:sList ] On Behalf

Of Cheezem

Sent: Wednesday, September 16, 2009 4:46 PM

To: sList

Subject: Re: GFCF, soy free diet

Shirley,

While it's true that an ABAB reversal design can produce

interesting data, it's important to consider certain other issues in

implementing one. Blinding and allocation concealment, for instance, are rarely

possible, with all of the resultant biases remaining. Consistent implementation

is another issue (and no, I don't just mean " cheating " ). Then there's

appropriate data collection (and assorted biases), Hawthorne effects, errors of

misattribution due to covarying factors (unintentional or otherwise)...

The list goes on and on.

-- Cheezem

aspieperspective.blogspot.com

Hi ,

I agree with most of what you

say. Nevertheless, parents who are willing to be good observers and agree to

collect data on their children can gain a lot of information on what works and

what does not. As far as maturation goes; if your child was on the GFCF diet

and certain behaviors were reduced in frequency and/or intensity and now you

take the child off the diet and the behaviors go back to baseline than

certainly maturation was not the issue….( ideally then you will put them

back on the diet to see the behaviors reduced again).

I do have a graduate degree in

clinical nutrition as well as other degrees and I do agree with you that many

so called science based professions, including MDs do not defer to science in

their decision making and in the way they practice their profession.

Yours

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then

some.

Work:

Fax:

shirly@...

www.shirlygilad.com

From: sList

[mailto:sList ]

On Behalf Of Cheezem

Sent: Wednesday, September 16, 2009 9:37 AM

To: sList

Subject: Re: GFCF, soy free diet

Shirly,

There has been quite a bit of research (one of the reasons why I cited a

systematic review and meta-analysis of it), but few RCTs. There's also

been a study (Hediger et al., 2008; PubMed ID 17879151) which appears to

indicate that a CF diet may impair bone growth in autistic children. I am

unaware of other systematic research into

Given the tendency of most people to fail to engage in proper critical

evaluation of the evidence (to be fair, this requires postgraduate-level

understanding of research methodology), there's a lot of bad

information and bad advice out there. I've even noticed a good bit of it in

this thread of conversation.

Two of the problems with anecdotal evidence, especially in the field of

autism, are the issues of placebo effects and misattribution of

maturational effects. I've seen lots of evidence of both while reading

the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8.

It's an utterly brilliant parody of the way that many " nutritionists "

practice (see Ben Goldacre's work for detailed discussion of the issues and

pseudoscience involved).

-- Cheezem

aspieperspective.blogspot.com

On Mon, Sep 14, 2009 at 9:34 PM, Shirly Gilad

wrote:

To my best knowledge there is

no serious research on the effects of the GFCF diet on kids with autism. I

heard anecdotal evidence both in favor of and against the diet. I can tell you

that my son was on it and the change was so miniscule that it was not worth it.

We saw a very small reduction in self stimulating behavior. I took him off the

diet gradually adding one component at a time and I did not see any adverse

effects. I myself did the diet with him and I am still on it. It helped a

chronic pain issue that I have had for years and there was no medical

treatment for (other than pain killers). What I am saying is that if you do it

gradually and monitor closely you will be able to tell what is the effect on

your child and make decisions accordingly.

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then

some.

Work:

Fax:

shirly@...

www.shirlygilad.com

From: sList

[mailto:sList ]

On Behalf Of walshed63

Sent: Monday, September 14, 2009 4:12 PM

To: sList

Subject: GFCF, soy free diet

My seven year old non-verbal daughter with autism has been on the diet since

diagnosis at age two. She has made very little progress in her speech and

writing skills, although her ability to function in a classroom and in public

situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in

her eye contact, etc. However, I'm not convinced it is doing her any good at

this point.

She is the only kid of over twenty in her cluster on the diet, which creates

big disruptive problems at meal and snack time. She is very underweight and is

mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off

her diet, and I have not seen it affect her behavior.

Does anyone have any experience with taking their child off the diet and the

results it produced?

Can anyone point me to any good research that has been done on this subject.

I should mention that her teacher doesn't feel she is benefiting from the diet

and in fact it is creating educational problems because of its exclusiveness.

--

-- Cheezem

aspieperspective.blogspot.com

--

-- Cheezem

aspieperspective.blogspot.com

[Guest guest]

I know you are well intentioned but knowing your background in scientific studies I find it hard to believe you would recommend Offit? Perhaps you like his position but he cannot "under scientific standards" be considered someone a parent should turn to for an objective answer. He has made millions on the production of vaccines and even has recently intentionally withheld that information when being interviewed. I thought one of the standards for scientific review was bias? I don't have a position on this matter but I would never look to Offitt. Fran

Subject: GFCF, soy free dietTo: sList

Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

I don't know why I'm engaging in this discussion but I can't seem to help myself...Please excuse my typos or occasional tangential thoughts as it is 4 in the morning and I need to hurry.

Ok, the first part, I read Ben Goldacre, who appears to dislike a parent who believes in waiting to vaccinate. Interesting to note though that he was also against putting fluoride in the water system and in other foods/drinks because of the lack of research confirming its safety. Many parents of kids with asd who are using biomedical interventions would agree. They also agree there is not enough evidence about the safety of the accumulatibve effects of other chemicals in our environment on a developing fetus and brain. Hmmm.....

I read Photon in the Darkness about his perception that the autism community made up the theory of 'poor excretors' based on the study (which was quite flawed) regarding the lack of mercury in the kids' hair. That is not the only place where the poor excreters theory came from but apparently the only place this indiviudal wanted to cite. The arguments and information these individuals you provided cite....I am not even going to read Offit because he is quite rich from a vaccine he assisted in developing and there is a conflict of interest regarding whatever research he can come up with. Anyway, the information these indiviudals cite is old and outdated and quite frankly ignorant (ignorant meaning---they are uninformed). There is a lot more informaiton regarding biomedical interventions and it appears to get misunderstood, misrepresented when presented by well meaning professionals who have not fully done their research into what it entails.

The reality is...we all have our perspectives. Our current perspectives are based on our history of experiences, our education, etc. I speak with other professionals in my field all the time and before becoming a parent of a kid with asd, I shared similar perspectives. Let me be clear in that I am in no way "desperate to cure my son." Neither are most parents. I have stated many times that is not a reason to utilize biomedical. I want him physically healthy. He is getting there. He gets better every day. Oh, and so do his symptoms amazingly enough. The rest, which is a little quirkiness (makes him quite unique), I cherish because he is an amazing little boy. My next job is to prepare society for him as he gets older. I desire for society to be more accepting of and welcoming of my boy, instead of me trying to make him fit in to society and change who he is. That was my first tangent....back to topic...

Perhaps do some research on glutathione production and efficient methylation processes, zinc deficiencies, vitamin A deficiencies and how they affect the body, especially a developing one. Start there with biomedical and then present an argument about how biomedical is pseudoscience. Moreover, do some research on adjuvants and what their purpose is in vaccines and the chemicals used and the potential effects of those chemicals (ie. aluminum).

With regard to mercury, since the well meaning professionals had so much time to derive an opinion based on a crappy research assignment, check into urinary porphyrin tests that check mercury levels more accurately. I assume you have heard of none of this. There is lab work to confirm these deficiencies and/or challenges the body has. Hence, why they are medical issues, not in your head so-to-speak. Do they work for everyone? No, of course not. But neither do other medical interventions. When treating cancer, some live, some die. Every individual is different and therefore a blanket treatment cannot work. But there are a lot of labs that one can view and see the challenges.

Most parents are not anti-vaccine, who utilize biomedical. Biomedical balances the body. Everyone has different levels of what makes them perform at their optimum level. For example, I may need more B vitamins to function, whereas you may not.

Ok, now let me approach the ARI link regarding the use of marijuana for medicinal purposes. First, marijuana has been around for thousands of years and has been used medicinally prior to the proposal of using it for the anxiety symptoms related to autism. It is used for individuals receivng cancer treatment who need to eat and not be nauseous and it is used for glaucoma as it helps with inflammation in the eye area and I believe pain management.

I have seen parents with extrememly challenging kids who pop a non-prescribed xanax in their mouths at times and/or who have had their children on serious pharmaceutical drugs such as Risperdal and Seroquel and a host of others for many years to no avail.

And, having been in the mental health field for over 20 years, I have observed many individuals who self medication their anxiety symptoms with occasional marijuana use instead of taking a prescribed medication on a daily basis that poses undesireable and intolerable side effects.

You and I do not have a child so severe, so I try to be very careful with parents who may utilize such interventions and not judge them because I have no idea what they all, including the child, live through on a daily basis.

The page merely proposes something a parent utilized on their child with some success. The page does not condone the use of marijuana for children and outlines the laws and potential outcomes (negative or positive) for using it.

I did not read that thinking the writers were saying "go buy some pot and give it to your kid." Many, many of the kids are extremely anxious. Though, when I smoked it in college it increased my anxiety so I am not sure how it works really. Anyway, it was not presented in a way that condoned the use of it.

Again, perspective.

From: Cheezem

Sent: Wednesday, September 16, 2009 4:47 PM

To: sList

Subject: Re: GFCF, soy free diet

Austintandt,

Do you want evidence that ARI purveys junk science or do you want evidence on ARI's reputation? If the former, I suggest starting with the works of Ben Goldacre, Prometheus (of Photon in the Darkness), Offit, and Orac (of Respectful Insolence). All have done very good, detailed critiques of ARI's "science". Both other authors and more specific links are available on request.

As for the reputation bit, that's a bit harder to demonstrate, especially as Generation Rescue has been catching up with them as of late. Perhaps one of their most infamous pages is this http://www.autism.com/treatable/drug/marijuana_org.htm , in which... well, I suggest you read for yourself. Suffice it to say that while I may be relatively new to this list, I am not new to online discussions of autism. My statements about reputations reflect this.

-- Cheezem

aspieperspective.blogspot.com

On Wed, Sep 16, 2009 at 4:15 PM, <austintandtbellsouth (DOT) net> wrote:

Where did you get your information that the ARI is "probably the most infamous purveyor of junk science in regards to autism"?

From: Cheezem

Sent: Wednesday, September 16, 2009 10:23 AM

To: sList

Subject: Re: GFCF, soy free diet

Considering that the Autism Research Institute is probably the most infamous purveyer of junk science in regards to autism on the 'net, this is unsurprising. It's also worth noting that sites like that have severe selection bias in testimonials -- the people who don't attribute a benefit (defined or otherwise) to ARI's pseudoscientific and/or unethical interventions are unlikely to visit their website long enough to leave such a testimonial.

Additionally, there are a number of issues related to survey design and measurement when compiling a figure like that. I'll have to take a look at how it was done. Suffice it to say, however, that it is not a reliable piece of information.

As a final point, it's worth noting that you repeatedly mention eating a generally healthier diet as part of what you're doing. This brings up the question of attribution again -- is it eliminating/reducing gluten and casein from/in the diet or is it just eating a more healthy diet?

-- Cheezem

aspieperspective.blogspot.com

On Wed, Sep 16, 2009 at 6:08 AM, <austintandtbellsouth (DOT) net> wrote:

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before. My son is mostly gluten free, with the exception of maybe 2 small cheats. I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel. Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot. He protests about it but we try to explain why we are doing it--to be healthier, all of us. We did not see any huge gains in language or social whatever. What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better. When we feel better, we act better. I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time. Again, he feels better. I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet. It is healthier and I want us all to be healthier. I lost 5 pounds over the summer in minimizing my gluten intake and I feel better. Not bloated at the end of the day, etc... I get that. We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits. Eliminating processed foods as much as possible.

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful.

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

For my son...Sent from my iPhone

On Sep 14, 2009, at 8:29 PM, <detcindyanderson> wrote:

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter. We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes. Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF. While it was hard in public situations we found replacements for everything she ate. She was fine with the diet but once again no results.

I have friends with autistic kids who swear it helps there kids. I wish it helped mine. With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much. The girl brain and body is far more complex from what my doctor tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

By the way I did both diets religiously for 8 months. Good luck to you. If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det

"America's Most Wanted" on FOX at 9 pm ET/Saturdays

Check out www.amw.com--- On Mon, 9/14/09, walshed63 <walshed63> wrote:

From: walshed63 <walshed63>Subject: GFCF, soy free dietTo: sList Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

Your last question....I don't know. It is still a work in progress. We continue to take data, keep a journal and challenge.

I am firm on knowing that removing gluten allowed him to go to the bathroom every day! And, that his stomach is no longer distended/bloated. He's much leaner now. Gluten is a type of glue that holds food together and used to be used to hang wallpaper. That can't be good for our bodies.

From: Cheezem

Sent: Wednesday, September 16, 2009 10:23 AM

To: sList

Subject: Re: GFCF, soy free diet

Considering that the Autism Research Institute is probably the most infamous purveyer of junk science in regards to autism on the 'net, this is unsurprising. It's also worth noting that sites like that have severe selection bias in testimonials -- the people who don't attribute a benefit (defined or otherwise) to ARI's pseudoscientific and/or unethical interventions are unlikely to visit their website long enough to leave such a testimonial.

Additionally, there are a number of issues related to survey design and measurement when compiling a figure like that. I'll have to take a look at how it was done. Suffice it to say, however, that it is not a reliable piece of information.

As a final point, it's worth noting that you repeatedly mention eating a generally healthier diet as part of what you're doing. This brings up the question of attribution again -- is it eliminating/reducing gluten and casein from/in the diet or is it just eating a more healthy diet?

-- Cheezem

aspieperspective.blogspot.com

On Wed, Sep 16, 2009 at 6:08 AM, <austintandtbellsouth (DOT) net> wrote:

oops, that was an error....My phone was not sending messages and before I went into a long post (I know--so unusual for me), I was testing to see if it went through...sorry...

Ok, we started gfcf over the summer and we have basically begun to rotate dairy, as we had done before. My son is mostly gluten free, with the exception of maybe 2 small cheats. I just couldn't send him to Chuck E. Cheese with camp and not allow him to have a piece of pizza--felt really cruel. Anyway, I wish we had done it sooner, when he was younger as he is now 6 and talks a lot. He protests about it but we try to explain why we are doing it--to be healthier, all of us. We did not see any huge gains in language or social whatever. What we have seen so far is that his belly is significantly flatter, no more bloat so that has to feel better. When we feel better, we act better. I believe his ability to handle negative emotions and regulate his emotions has improved during this period of time. Again, he feels better. I don't see us maintaining the diet past the 3 months but I don't see us allowing him to have the amount of gluten containing foods he had prior to starting this diet. It is healthier and I want us all to be healthier. I lost 5 pounds over the summer in minimizing my gluten intake and I feel better. Not bloated at the end of the day, etc... I get that. We are all working towards eating more meat (chicken, turkey--maybe fish some day), veggies and fruits. Eliminating processed foods as much as possible.

If you look at the Autism Research Institute website, you can see gfcf results from parents posting something like 64% felt it was helpful.

From: Tina Terri Austin

Sent: Tuesday, September 15, 2009 11:59 AM

To: sList

Subject: Re: GFCF, soy free diet

For my son...Sent from my iPhone

On Sep 14, 2009, at 8:29 PM, <detcindyanderson> wrote:

I have tired the diet twice...first with my entire family...3 girls and a husband, and then second time around with just my autistic daughter. We did GF/CF the first time for the whole family with no success...took a break and didn't see any changes. Then, felt guilty and tried it with biomedical and GI testing and decided to try GF/CF/SF/YF. While it was hard in public situations we found replacements for everything she ate. She was fine with the diet but once again no results.

I have friends with autistic kids who swear it helps there kids. I wish it helped mine. With girls who are autistic, and mine is also apraxic, I have read the diets don't help girls as much. The girl brain and body is far more complex from what my doctor tells me. I wish it would have helped mine. Believe me.

Just an experience I wanted to share but there are parents far more experience than me and support groups on s List that may be able to shed some light.

By the way I did both diets religiously for 8 months. Good luck to you. If you find something that works and helps your daughter please share.

_______________________________

America's Most Wanted\Producer\Florida Bureau

Cell

Email: Det

"America's Most Wanted" on FOX at 9 pm ET/Saturdays

Check out www.amw.com--- On Mon, 9/14/09, walshed63 <walshed63> wrote:

From: walshed63 <walshed63>Subject: GFCF, soy free dietTo: sList Date: Monday, September 14, 2009, 4:12 PM

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

So, according to another email, you have not seen enough reliable/valid research on special diets. However, you dispute that good research can actually be done. Which is why there is not a lot of research on special diets and parents rely upon anecdotals for information regarding how and why to try.

Did you ever try a special diet?

Or, come up with a research plan. You have 1500 people on here as your pool of participants.

Just a thought.

From: Cheezem

Sent: Wednesday, September 16, 2009 4:46 PM

To: sList

Subject: Re: GFCF, soy free diet

Shirley,

While it's true that an ABAB reversal design can produce interesting data, it's important to consider certain other issues in implementing one. Blinding and allocation concealment, for instance, are rarely possible, with all of the resultant biases remaining. Consistent implementation is another issue (and no, I don't just mean "cheating"). Then there's appropriate data collection (and assorted biases), Hawthorne effects, errors of misattribution due to covarying factors (unintentional or otherwise)...

The list goes on and on.

-- Cheezem

aspieperspective.blogspot.com

On Wed, Sep 16, 2009 at 2:06 PM, Shirly Gilad <shirlygilad> wrote:

Hi ,

I agree with most of what you say. Nevertheless, parents who are willing to be good observers and agree to collect data on their children can gain a lot of information on what works and what does not. As far as maturation goes; if your child was on the GFCF diet and certain behaviors were reduced in frequency and/or intensity and now you take the child off the diet and the behaviors go back to baseline than certainly maturation was not the issue….( ideally then you will put them back on the diet to see the behaviors reduced again).

I do have a graduate degree in clinical nutrition as well as other degrees and I do agree with you that many so called science based professions, including MDs do not defer to science in their decision making and in the way they practice their profession.

Yours

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirlyshirlygilad

www.shirlygilad.com

From: sList [mailto:sList ] On Behalf Of CheezemSent: Wednesday, September 16, 2009 9:37 AMTo: sList Subject: Re: GFCF, soy free diet

Shirly,

There has been quite a bit of research (one of the reasons why I cited a systematic review and meta-analysis of it), but few RCTs. There's also been a study (Hediger et al., 2008; PubMed ID 17879151) which appears to indicate that a CF diet may impair bone growth in autistic children. I am unaware of other systematic research into

Given the tendency of most people to fail to engage in proper critical evaluation of the evidence (to be fair, this requires postgraduate-level understanding of research methodology), there's a lot of bad information and bad advice out there. I've even noticed a good bit of it in this thread of conversation.

Two of the problems with anecdotal evidence, especially in the field of autism, are the issues of placebo effects and misattribution of maturational effects. I've seen lots of evidence of both while reading the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8. It's an utterly brilliant parody of the way that many "nutritionists" practice (see Ben Goldacre's work for detailed discussion of the issues and pseudoscience involved).

-- Cheezem

aspieperspective.blogspot.com

On Mon, Sep 14, 2009 at 9:34 PM, Shirly Gilad <shirlygilad> wrote:

To my best knowledge there is no serious research on the effects of the GFCF diet on kids with autism. I heard anecdotal evidence both in favor of and against the diet. I can tell you that my son was on it and the change was so miniscule that it was not worth it. We saw a very small reduction in self stimulating behavior. I took him off the diet gradually adding one component at a time and I did not see any adverse effects. I myself did the diet with him and I am still on it. It helped a chronic pain issue that I have had for years and there was no medical treatment for (other than pain killers). What I am saying is that if you do it gradually and monitor closely you will be able to tell what is the effect on your child and make decisions accordingly.

Shirly

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirlyshirlygilad

www.shirlygilad.com

From: sList [mailto:sList ] On Behalf Of walshed63Sent: Monday, September 14, 2009 4:12 PMTo: sList Subject: GFCF, soy free diet

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

--

-- Cheezemaspieperspective.blogspot.com

-- -- Cheezemaspieperspective.blogspot.com

[Guest guest]

Fran,

 

To be blunt, argumentum ad hominem is not a valid logical form. Offit's work is factually accurate.

 

-- Cheezem

aspieperspective.blogspot.com

I know you are well intentioned but knowing your background in scientific studies I find it hard to believe you would recommend Offit? Perhaps you like his position but he cannot " under scientific standards " be considered someone a parent should turn to for an objective answer. He has made millions on the production of vaccines and even has recently intentionally withheld that information when being interviewed. I thought one of the standards for scientific review was bias?  I don't have a position on this matter but I would never look to Offitt.

Fran

Subject: GFCF, soy free diet

To: sList Date: Monday, September 14, 2009, 4:12 PM

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

[Guest guest]

I do not deny that good research can be done. I used a Cochrane review to establish that it hasn't. What's more, the existing evidence is, by and large, that the diets don't help (beyond placebo effects, anyway) and that the hypotheses about autism used to justify the diet are, frankly, full of it.

 

As for your suggestion that I use the list as a pool of participants for a quality research plan, biased recruitment of participants is one of the easiest ways to deliberately bias research... and IRB review times for RCTs are slow enough that by the time I got a submision in and it was reviewed, I'd no longer have my student status at NSU. By the time that the trial was completed, I'd be well into my Ph.D. studies (and most of the places I'm applying to are out of state).

 

This is in addition to the little detail that one person can't run a quality RCT on their own, and that I wouldn't effectively be able to recruit assistants (as I'd normally be considered qualified only to be one).

 

-- Cheezem

aspieperspective.blogspot.com

So, according to another email, you have not seen enough reliable/valid research on special diets.  However, you dispute that good research can actually be done.  Which is why there is not a lot of research on special diets and parents rely upon anecdotals for information regarding how and why to try. 

 

Did you ever try a special diet?

 

Or, come up with a research plan.  You have 1500 people on here as your pool of participants. 

 

Just a thought. 

 

 

From: Cheezem

Sent: Wednesday, September 16, 2009 4:46 PM

To: sList

Subject: Re: GFCF, soy free diet

 

Shirley,

 

While it's true that an ABAB reversal design can produce interesting data, it's important to consider certain other issues in implementing one. Blinding and allocation concealment, for instance, are rarely possible, with all of the resultant biases remaining. Consistent implementation is another issue (and no, I don't just mean " cheating " ). Then there's appropriate data collection (and assorted biases), Hawthorne effects, errors of misattribution due to covarying factors (unintentional or otherwise)...

 

The list goes on and on.

 

-- Cheezem

aspieperspective.blogspot.com

Hi ,

 

I agree with most of what you say. Nevertheless, parents who are willing to be good observers and agree to collect data on their children can gain a lot of information on what works and what does not. As far as maturation goes; if your child was on the GFCF diet and certain behaviors were reduced in frequency and/or intensity and now you take the child off the diet and the behaviors go back to baseline than certainly maturation was not the issue….( ideally then you will put them back on the diet to see the behaviors reduced again).

I do have a graduate degree in clinical nutrition as well as other degrees and I do agree with you that many so called science based professions, including MDs do not defer to science in their decision making and in the way they practice their profession.

 

Yours

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of Cheezem

Sent: Wednesday, September 16, 2009 9:37 AMTo: sList Subject: Re: GFCF, soy free diet

 

Shirly,

 

There has been quite a bit of research (one of the reasons why I cited a systematic review and meta-analysis of it), but few RCTs. There's also been a study (Hediger et al., 2008; PubMed ID 17879151) which appears to indicate that a CF diet may impair bone growth in autistic children. I am unaware of other systematic research into

 

Given the tendency of most people to fail to engage in proper critical evaluation of the evidence (to be fair, this requires postgraduate-level understanding of research methodology), there's a lot of bad information and bad advice out there. I've even noticed a good bit of it in this thread of conversation.

 

Two of the problems with anecdotal evidence, especially in the field of autism, are the issues of placebo effects and misattribution of maturational effects. I've seen lots of evidence of both while reading the various anecdotes on the GFCF diet.

That, and I suggest viewing http://www.youtube.com/watch?v=SavsJYXWgm8 . It's an utterly brilliant parody of the way that many " nutritionists " practice (see Ben Goldacre's work for detailed discussion of the issues and pseudoscience involved).

 

-- Cheezem

aspieperspective.blogspot.com

 

 

To my best knowledge there is no serious research on the effects of the GFCF diet on kids with autism. I heard anecdotal evidence both in favor of and against the diet. I can tell you that my son was on it and the change was so miniscule that it was not worth it. We saw a very small reduction in self stimulating behavior. I took him off the diet gradually adding one component at a time and I did not see any adverse effects. I myself did the diet with him and I am still on it. It helped a chronic pain issue that I have had for years and  there was no medical treatment for (other than pain killers). What I am saying is that if you do it gradually and monitor closely you will be able to tell what is the effect on your child and make decisions accordingly.

 

Shirly

 

Shirly Gilad BCBA,RN, FNP, MS

Behavioral Therapy and then some.

Work:

Fax:

shirly@...

www.shirlygilad.com

 

 

 

From: sList [mailto:sList ] On Behalf Of walshed63

Sent: Monday, September 14, 2009 4:12 PMTo: sList Subject: GFCF, soy free diet

 

My seven year old non-verbal daughter with autism has been on the diet since diagnosis at age two. She has made very little progress in her speech and writing skills, although her ability to function in a classroom and in public situations has greatly improved over time.

When she was first placed on the diet, I believe there was some improvement in her eye contact, etc. However, I'm not convinced it is doing her any good at this point.She is the only kid of over twenty in her cluster on the diet, which creates big disruptive problems at meal and snack time. She is very underweight and is mostly interested in foods she sees that she can't have.

She is often successful at school and in public at grabbing and eating food off her diet, and I have not seen it affect her behavior.Does anyone have any experience with taking their child off the diet and the results it produced?

Can anyone point me to any good research that has been done on this subject.I should mention that her teacher doesn't feel she is benefiting from the diet and in fact it is creating educational problems because of its exclusiveness.

 

[Guest guest]

On the website "generation rescue", there are listed "rescue angels", which are parents who have recovered their kids (recover = lose diagnosis) or are in the successful process thereof.

These parents share their info, and also make themselves available for contact to those parents/caregivers who need support/advice/guidance in this regard.

Many parents post right on that site those interventions that proved most helfpul. I would say for at least the "rescue angels" in Florida, "GFCF" is listed in probably over 80% of successful interventions, and it is by far, the most common of interventions.

Is this scientific? Of course not. For a multitude of reasons, some listed on this thread, reliable scientific unbiased information would be difficult to obtain. Does that warrant total dismissal of GFCF? I don't think so.

As I understand it, the diet must be followed religiously, as some addivites in food do not readily disclose whether gluten or casein are contained therein.

Personally, we tried the diet and saw just a slight difference, and no difference when we stopped the diet. However, we have tried supplements that we started, stopped, started, stopped, started, stopped, and started and stopped again just to be SURE that the differences we saw were in fact attributable to the specific supplements. Without a doubt the difference in behaviors moved with the supplementation or lack thereof. Is this scientific? ABSOLUTELY. Only kidding. But its all the proof that WE need!