Re: GF/CF diet

[Guest guest]

Hi Josie,

First, good luck - hope you see lots of benefits.

Also, a follow-up question - anyone familiar with research evaluating this

intervention? The CF/GF diet has been around for a while, and I'm hearing a

lot of people asking about it after a recent article in Parents magazine.

Not being a medical person, I don't know how solid the assumptions behind

the diet are. The article rather loosely threw around references to

incomplete breakdown products or whatever from the milk acting as " opiates "

or alternately as " hallucinogens " . I'd like to see someone with the

appropriate background comment on the validity of the assumptions behind

this.

Even more importantly, I'd like to see some universities/clinics do the

controlled research needed to properly evaluate the diet. If it can be

helpful, it would be good to have it objectively established, with some

guidelines about which kids are likely to be responders. On the other hand,

if it does not pan out in controlled research trials, that would be helpful

to know, too. So does anyone know of any experimental research (i.e. done

with the proper controls so that alternative explanations can be ruled out)

on this diet? So far, case studies are all I've seen.

Again, very best wishes - I hope it's fabulously successful for Jordan.

> Hi! We are starting Jordan (our nearly 5 year old) on a GF/CF diet.

> Today was our first day. Is anyone using this?

> Have you seen results?

[snip]

[Guest guest]

Hi! I am new to this list, but I am also on the GFCF diet list. It is busy

so expect a LOT of mail, but it has really helped me implement the diet. Go

to www.GFCFdiet.com they have a list of food and you can sign on to the list

there. HTH!

Cara Stroud

Partyshop Manager #2903

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[Autism-Behav-TX] GF/CF diet

>

>

> Hi! We are starting Jordan (our nearly 5 year old) on a GF/CF diet.

> Today was our first day. Is anyone using this?

> Have you seen results?

> Do you have any advice or recipes for cooks who have no

> experience whatsoever? You can email me personally at

> josiehuffman@... if you'd like?

> Thanks!

> Josie

>

> P.S. Can you believe it's February, we've been in shorts for a week?

>

>

>

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[Guest guest]

I don't know of any scientific studies, just a lot of parental success

stories. I figure that it can't hurt my son (he is probably eating a better

diet than we are!) and what if it does help?

It is a lot of extra work but I can't justify NOT trying it. I don't think

I could live with the " what ifs " . My son has been casien free for about 3

weeks and there has been a big change. We are phasing out the gluten a

little slower.

I have read Karyn Seroussi " s entire book (the excerpt in Parents came from

there) and she could be talking about my son. Again, it can't hurt him, why

not try it for a year and see what happens? That's my view on the diet.

If you want a Dr's opinion, try a DAN! Dr. They have a list of them at

www.GFCFdiet.com .

Cara Stroud

Partyshop Manager #2903

Shop online for all your party needs!

First order 10% off and no sales tax!

www.1800partyconsultant.com/2903

Great Home Business Opportunity!

<A HREF= " http://www.1800partyconsultant.com/2903/ " >Cara's Party Supplies</A>

Re: [Autism-Behav-TX] GF/CF diet

>

>

> Hi Josie,

>

> First, good luck - hope you see lots of benefits.

>

> Also, a follow-up question - anyone familiar with research evaluating this

> intervention? The CF/GF diet has been around for a while, and I'm hearing

a

> lot of people asking about it after a recent article in Parents magazine.

>

> Not being a medical person, I don't know how solid the assumptions behind

> the diet are. The article rather loosely threw around references to

> incomplete breakdown products or whatever from the milk acting as

" opiates "

> or alternately as " hallucinogens " . I'd like to see someone with the

> appropriate background comment on the validity of the assumptions behind

> this.

>

> Even more importantly, I'd like to see some universities/clinics do the

> controlled research needed to properly evaluate the diet. If it can be

> helpful, it would be good to have it objectively established, with some

> guidelines about which kids are likely to be responders. On the other

hand,

> if it does not pan out in controlled research trials, that would be

helpful

> to know, too. So does anyone know of any experimental research (i.e. done

> with the proper controls so that alternative explanations can be ruled

out)

> on this diet? So far, case studies are all I've seen.

>

> Again, very best wishes - I hope it's fabulously successful for Jordan.

>

>

>

>

> > Hi! We are starting Jordan (our nearly 5 year old) on a GF/CF diet.

> > Today was our first day. Is anyone using this?

> > Have you seen results?

> [snip]

>

>

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[Guest guest]

I'm glad if you're seeing success. And, I'm not trying to suggest that

anyone either do or do not try the diet. What I am wishing for would be

research evidence. Although some Drs. advice can be very valuable, it's no

substitute for data. After all, the physicians' advice is ideally based on

the results of controlled scientific investigations.

>

> Reply-To: Autism-Behav-TXonelist

> Date: Wed, 23 Feb 2000 19:38:26 -0600

> To: <Autism-Behav-TXonelist>

> Subject: Re: [Autism-Behav-TX] GF/CF diet

> I don't know of any scientific studies, just a lot of parental success

> stories. I figure that it can't hurt my son (he is probably eating a better

> diet than we are!) and what if it does help?

[snip]

> If you want a Dr's opinion, try a DAN! Dr. They have a list of them at

> www.GFCFdiet.com .

[Guest guest]

Josie Huffman wrote:

>

We are starting Jordan (our nearly 5 year old) on a GF/CF diet.

> Today was our first day. Is anyone using this?

> Have you seen results?

We did GF/CF with few results, but later were queried by a nutritionist

as to whether we'd actually tested for allergies to gluten and casein

before starting. We hadn't. When we did do the urine and blood tests,

one of my boys showed up strongly allergic to casein, a milk protein.

The other child is mildly allergic. We've tried to delete much of this

from the diet of both twins. After the first week, the director of my

most-allergic son's ABA center was telling all of the other parents to

have their kids tested! His behavior improved remarkably and he as

continued to be better overall. Plus the circles under his eyes are

gone. This is a hard diet to follow, although just the casein portion

is not bad. There is a listserve (GFCF diet) that provides recipes and

assistance for parents. I'd suggest you join that discussion for

support in this diet.

Sostack

[Guest guest]

wrote:

>

>

>

> I'm glad if you're seeing success. And, I'm not trying to suggest that

> anyone either do or do not try the diet. What I am wishing for would be

> research evidence. Although some Drs. advice can be very valuable, it's no

> substitute for data. After all, the physicians' advice is ideally based on

> the results of controlled scientific investigations.

>

>Hi ,

Actually there is a lot of research going on concerning bio

causes/treatments. I'm not sure who and what exactly, but a lot of it is

discussed in Seroussi's new book, the woman who wrote the article

in Parents. The book is called " Unraveling the Mystery of Autism/PDD "

It's a very good book, I have a feeling that soon we will be getting

some good solid science backing dietary intervention.

Having a child who recovered using behavioral intervention alone, I

could easily poo-poo the diet. Had I to do it over, I would implement

the diet at the same time I started ABA. It can't hurt and there are

many people out there having good success with it.

I hope that you keep this list active and people ( with more to

contribute than myself!) start to participate in some discussion on

behavioral intervention.

To possibly get something started I'd be interested to know what people

think about the recent trend toward Sundberg/partington methodology. And

how we can avoid prompt dependency when starting an inexperienced team

out using errorless teaching.

Personally I would like to see a blending of discrete trial teaching and

natural environment teaching become commonplace, if we can figure out

how to train therapists and parents to be effective I think we will see

more kids doing well. Lynette

[Guest guest]

Hi all

There is much research to support the validity of the

GF/CF diet approach to ameliorating symptoms of

autism. Research by Dr. Cade at the University

of Florida shows dramatic improvement in 90% of

autistic children removed from casein (milk protein)

completely Karl Reinholt (sp) of Norway has done

research in this field particularly regarding the

opiod theory for years as well.

One of the real tricks is to eliminate ALL sources of

the gluten and casein...which is realllllly hard to

do. They are hidden ingredients in virtually

everything!

We've had Mit gf/cf for almost a year now. The first

month, his ABA consultant was amazed at how much

progress he'd made. He's continued to make progress,

but as always, it's hard to pinpoint exactly what

intervention is responsible for which % of his

improvement.

I can tell you that when he gets a hold of a cracker

or some other forbidden gluten/casein food, his

irritability factor and whininess skyrocket. (I know

that's not scientific evidence, but it's consistent

enough to convince me I've isolated the causal

factor.) So even if keeping those under control is

all the benefit the diet is giving him, it's worth the

time, effort and expense.

Klaire Labs has a new digestive enzyme specifically

designed to help autistic kids handle gluten/casein

called Serenaide. Just enter Serenaide or Klaire labs

into your search engine and you should find their

site. Most families are using it not to replace the

gfcf diet, but to minimize the impact of " accidents. "

I've just gotten my first bottle, so cannot give you

personal experience regarding effectiveness.

We've found the " gut connection " very important in

Mit's autism...and steps to heal the gut and eliminate

those contributing factors have helped make his ABA

therapy all the more effective because he feels better

and is better able to participate and learn.

Best of luck to all

Peg Pickering

Mit and Janie's Mom

--- wrote:

> Hi Josie,

>

> First, good luck - hope you see lots of benefits.

>

> Also, a follow-up question - anyone familiar with

> research evaluating this

> intervention? The CF/GF diet has been around for a

> while, and I'm hearing a

> lot of people asking about it after a recent article

> in Parents magazine.

>

> Not being a medical person, I don't know how solid

> the assumptions behind

> the diet are. The article rather loosely threw

> around references to

> incomplete breakdown products or whatever from the

> milk acting as " opiates "

> or alternately as " hallucinogens " . I'd like to see

> someone with the

> appropriate background comment on the validity of

> the assumptions behind

> this.

>

> Even more importantly, I'd like to see some

> universities/clinics do the

> controlled research needed to properly evaluate the

> diet. If it can be

> helpful, it would be good to have it objectively

> established, with some

> guidelines about which kids are likely to be

> responders. On the other hand,

> if it does not pan out in controlled research

> trials, that would be helpful

> to know, too. So does anyone know of any

> experimental research (i.e. done

> with the proper controls so that alternative

> explanations can be ruled out)

> on this diet? So far, case studies are all I've

> seen.

>

> Again, very best wishes - I hope it's fabulously

> successful for Jordan.

>

>

>

>

> > Hi! We are starting Jordan (our nearly 5 year

> old) on a GF/CF diet.

> > Today was our first day. Is anyone using this?

> > Have you seen results?

> [snip]

>

>

__________________________________________________

[Guest guest]

Hi Peg & Lynette,

Thanks for the posts. I'd be interested in seeing any published studies. I

know we often find out about stuff in secondary sources like books and

newsletters, but if you happen to have any primary source info (which

journal and what year) that would be great. For example, dramatic

improvement in 90% of autistic children is a very large effect, and it would

be good to look at how the research was designed, how effects were measured,

etc. That doesn't take away from what you're saying about your individual

experiences, and I'm not trying to minimize that.

Thanks,

Peg wrote:

>

> There is much research to support the validity of the

> GF/CF diet approach to ameliorating symptoms of

> autism. Research by Dr. Cade at the University

> of Florida shows dramatic improvement in 90% of

> autistic children removed from casein (milk protein)

> completely Karl Reinholt (sp) of Norway has done

> research in this field particularly regarding the

> opiod theory for years as well.

and Lynette wrote:

>Actually there is a lot of research going on concerning bio

>causes/treatments. I'm not sure who and what exactly, but a lot of

>it is discussed in Seroussi's new book, the woman who wrote

>the article in Parents. The book is called " Unraveling the Mystery of

>Autism/PDD " It's a very good book, I have a feeling that soon we will

>be getting some good solid science backing dietary intervention.

[Guest guest]

Clearly the neurological problems manifested in Autism are a function of some

organic factor/s. It is likely, I think, that the organic factor/s may be

different in different persons. As you know, Secretin was hoped to be a miracle

treatment for Autism, but I heard that in its first double blind study, that no

effect was demonstrated. Perhaps there are various physiological insults or

combinations of physiological insults that could result in what we call Autism

in different individuals.

I admire the caregivers of folks with Autism, who have the resources and

determination to carefully explore every promising avenue of treatment. As you

also know (and I hope other parents know, as well) such exploration must not be

done in place of solid ABA treatment for young children with Autism.

I am interested in hearing any confirmed treatment that is effective, because I

frequently come into contact with families with a child with a PDD. Until

confirmation, I remain hopeful but skeptical of the efficacy of other treatments

as a general treatment for Autism. .

Peg Pickering wrote:

Hi all

There is much research to support the validity of the

GF/CF diet approach to ameliorating symptoms of

autism. Research by Dr. Cade at the University

of Florida shows dramatic improvement in 90% of

autistic children removed from casein (milk protein)

completely Karl Reinholt (sp) of Norway has done

research in this field particularly regarding the

opiod theory for years as well.

One of the real tricks is to eliminate ALL sources of

the gluten and casein...which is realllllly hard to

do. They are hidden ingredients in virtually

everything!

We've had Mit gf/cf for almost a year now. The first

month, his ABA consultant was amazed at how much

progress he'd made. He's continued to make progress,

but as always, it's hard to pinpoint exactly what

intervention is responsible for which % of his

improvement.

I can tell you that when he gets a hold of a cracker

or some other forbidden gluten/casein food, his

irritability factor and whininess skyrocket. (I know

that's not scientific evidence, but it's consistent

enough to convince me I've isolated the causal

factor.) So even if keeping those under control is

all the benefit the diet is giving him, it's worth the

time, effort and expense.

Klaire Labs has a new digestive enzyme specifically

designed to help autistic kids handle gluten/casein

called Serenaide. Just enter Serenaide or Klaire labs

into your search engine and you should find their

site. Most families are using it not to replace the

gfcf diet, but to minimize the impact of " accidents. "

I've just gotten my first bottle, so cannot give you

personal experience regarding effectiveness.

We've found the " gut connection " very important in

Mit's autism...and steps to heal the gut and eliminate

those contributing factors have helped make his ABA

therapy all the more effective because he feels better

and is better able to participate and learn.

Best of luck to all

Peg Pickering

Mit and Janie's Mom

--- wrote:

> Hi Josie,

>

> First, good luck - hope you see lots of benefits.

>

> Also, a follow-up question - anyone familiar with

> research evaluating this

> intervention? The CF/GF diet has been around for a

> while, and I'm hearing a

> lot of people asking about it after a recent article

> in Parents magazine.

>

> Not being a medical person, I don't know how solid

> the assumptions behind

> the diet are. The article rather loosely threw

> around references to

> incomplete breakdown products or whatever from the

> milk acting as " opiates "

> or alternately as " hallucinogens " . I'd like to see

> someone with the

> appropriate background comment on the validity of

> the assumptions behind

> this.

>

> Even more importantly, I'd like to see some

> universities/clinics do the

> controlled research needed to properly evaluate the

> diet. If it can be

> helpful, it would be good to have it objectively

> established, with some

> guidelines about which kids are likely to be

> responders. On the other hand,

> if it does not pan out in controlled research

> trials, that would be helpful

> to know, too. So does anyone know of any

> experimental research (i.e. done

> with the proper controls so that alternative

> explanations can be ruled out)

> on this diet? So far, case studies are all I've

> seen.

>

> Again, very best wishes - I hope it's fabulously

> successful for Jordan.

>

>

>

>

> > Hi! We are starting Jordan (our nearly 5 year

> old) on a GF/CF diet.

> > Today was our first day. Is anyone using this?

> > Have you seen results?

> [snip]

>

>

__________________________________________________

[Guest guest]

,

You said you've tried almost everything except the diet and meds, but I was

wondering if you have ever heard of NIDS and Dr. Goldberg? It is one more

avenue.