Re: PETITION to CCFA; first draft

[Guest guest]

AMEN

I think it's well worded, researched, cross referenced and well done.

Robbie

PETITION to CCFA; first draft

I've been thinking of ways to influence a study being done on SCD, and

mostly am frustrated by the CCFA (Crohn's and Colitis Foundation of

America)'s portrayal of this diet, and continued lack of interest. So I

am writing a petition to the CCFA demanding them to help fund a study on

SCD. Here is the first draft, and I want feedback. I haven't finished

the footnotes yet, and I will probably have to remove the monosaccharide

part about elemental diets, because I don't think the elemental diet

they use is truly monosaccharide (anyone have better information about

what they use?) When it is finished, I will post it on a petition

website, and you can go there to add your signature. When we've

collected a substantial number, I'm planning on contacting the media,

political representatives (any suggestions to these is much

appreciated), etc., and then possibly have a representative of each

patient subset who has benefited from SCD. (adult IBD patient, child IBD

patient with parent, recovered autistic child with parent, etc.) and we

can hand deliver it to CCFA with hopefully, the media present.

Now, if anyone has more information about CCFA and how they could

contribute to funding, or CCFA celebrities who have been active who may

be interested in signing, or doctors who use SCD who would be interested

in signing, or whether CCFA even has a moral obligation to help fund a

study, please send it to me. I don't want to do this without researching

all bases, and have it fall flat. Thanks, and please provide feedback.

If Elaine is truly dying, it would be nice to move this along.

Debora

PETITION to CCFA:

We, the people suffering from Inflammatory Bowel Disease, celiac

disease, diverticulitis, IBS, and autism, or the parents, caretakers,

children, family members or friends of people suffering from the above

diseases, who are benefiting from the Specific Carbohydrate Diet (SCD),

demand that the CCFA contribute to, organize, help fund, or encourage

the funding of a proper, scientific study of the SCD. We feel that an

organization dedicated to helping find a cure to these devastating

diseases should not continue to overlook a potential treatment that will

benefit no institution financially, and in fact, is failing in its

mission statement by ignoring countless patients, physicians, and

researchers who are improving or have patients improving from this diet.

We believe that every new patient diagnosed has the right to be informed

of dietary changes he/she can make that may help his/her disease. We

believe that in the meantime, CCFA should provide adequate media

coverage on this diet, and not incorrectly refer to the Specific

Carbohydrate diet as a low carbohydrate diet, or low calorie diet, when

it is not, which may potentially discourage new patients from trying the

diet due to false information. We demand immediate investigation into a

diet that provides gluten-free, monosaccharide carbohydrates with a high

nutritional content as well as inexpensive, daily probiotics in the form

of homemade yogurt, when the latest research points to the benefits of

probiotics1 and the increased prevalence of gluten and disaccharide

intolerance among patients2, and it has long been proven that an

elemental, monosaccharide diet is an effective way to achieve remission

in IBD3. We demand that the CCFA stop posting recipes that include

sugar, when sucrose consumption has been linked to the potential onset

of Crohn's disease4, and flour products, when celiac has been found in

30% of Crohn's disease patients5. We demand serious consideration of

diet as a form of therapy, and expect the CCFA to participate in

vigorous research in order to discover the true merits of the SCD, so it

can no longer be referred to as an untested, fad diet. We will no longer

suffer in silence, or watch countless other people suffering, when

something as simple as a dietary change may help alleviate their

discomfort, and may improve their quality of life significantly. Do the

research. Help fund a study. It is gross incompetence to continue

ignoring the thousands of us who have found significant improvement on

this diet. Millions of suffering patients are waiting.

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

By the way, my IBD (UC) son has benefitted tremendously from SCD so if there

will be a way to provide a testimonial, I volunteer. His doctor is aware of him

being on SCD and though he did not say it would help, he did not say to not try

it, either. I wouldn't call him a supporter but I imagine 's medical files

would confirm he is on SCD, that is if his doctor chose to add that info to his

file.

Robbie

PETITION to CCFA; first draft

I've been thinking of ways to influence a study being done on SCD, and

mostly am frustrated by the CCFA (Crohn's and Colitis Foundation of

America)'s portrayal of this diet, and continued lack of interest. So I

am writing a petition to the CCFA demanding them to help fund a study on

SCD. Here is the first draft, and I want feedback. I haven't finished

the footnotes yet, and I will probably have to remove the monosaccharide

part about elemental diets, because I don't think the elemental diet

they use is truly monosaccharide (anyone have better information about

what they use?) When it is finished, I will post it on a petition

website, and you can go there to add your signature. When we've

collected a substantial number, I'm planning on contacting the media,

political representatives (any suggestions to these is much

appreciated), etc., and then possibly have a representative of each

patient subset who has benefited from SCD. (adult IBD patient, child IBD

patient with parent, recovered autistic child with parent, etc.) and we

can hand deliver it to CCFA with hopefully, the media present.

Now, if anyone has more information about CCFA and how they could

contribute to funding, or CCFA celebrities who have been active who may

be interested in signing, or doctors who use SCD who would be interested

in signing, or whether CCFA even has a moral obligation to help fund a

study, please send it to me. I don't want to do this without researching

all bases, and have it fall flat. Thanks, and please provide feedback.

If Elaine is truly dying, it would be nice to move this along.

Debora

PETITION to CCFA:

We, the people suffering from Inflammatory Bowel Disease, celiac

disease, diverticulitis, IBS, and autism, or the parents, caretakers,

children, family members or friends of people suffering from the above

diseases, who are benefiting from the Specific Carbohydrate Diet (SCD),

demand that the CCFA contribute to, organize, help fund, or encourage

the funding of a proper, scientific study of the SCD. We feel that an

organization dedicated to helping find a cure to these devastating

diseases should not continue to overlook a potential treatment that will

benefit no institution financially, and in fact, is failing in its

mission statement by ignoring countless patients, physicians, and

researchers who are improving or have patients improving from this diet.

We believe that every new patient diagnosed has the right to be informed

of dietary changes he/she can make that may help his/her disease. We

believe that in the meantime, CCFA should provide adequate media

coverage on this diet, and not incorrectly refer to the Specific

Carbohydrate diet as a low carbohydrate diet, or low calorie diet, when

it is not, which may potentially discourage new patients from trying the

diet due to false information. We demand immediate investigation into a

diet that provides gluten-free, monosaccharide carbohydrates with a high

nutritional content as well as inexpensive, daily probiotics in the form

of homemade yogurt, when the latest research points to the benefits of

probiotics1 and the increased prevalence of gluten and disaccharide

intolerance among patients2, and it has long been proven that an

elemental, monosaccharide diet is an effective way to achieve remission

in IBD3. We demand that the CCFA stop posting recipes that include

sugar, when sucrose consumption has been linked to the potential onset

of Crohn's disease4, and flour products, when celiac has been found in

30% of Crohn's disease patients5. We demand serious consideration of

diet as a form of therapy, and expect the CCFA to participate in

vigorous research in order to discover the true merits of the SCD, so it

can no longer be referred to as an untested, fad diet. We will no longer

suffer in silence, or watch countless other people suffering, when

something as simple as a dietary change may help alleviate their

discomfort, and may improve their quality of life significantly. Do the

research. Help fund a study. It is gross incompetence to continue

ignoring the thousands of us who have found significant improvement on

this diet. Millions of suffering patients are waiting.

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

Elaine has been fired up about this for a long time. I've emailed CCFA many

times and no

response. They had to recognize SCD eventually but I sure did not like their

comments on

the CCFA web site.

Carol F.

Celiac, SCD 5 years

[Guest guest]

Elaine has been fired up about this for a long time. I've emailed CCFA many

times and no

response. They had to recognize SCD eventually but I sure did not like their

comments on

the CCFA web site.

Carol F.

Celiac, SCD 5 years

[Guest guest]

Elaine has been fired up about this for a long time. I've emailed CCFA many

times and no

response. They had to recognize SCD eventually but I sure did not like their

comments on

the CCFA web site.

Carol F.

Celiac, SCD 5 years

[Guest guest]

My experience is that testimomies don't get accepted as scientific evidence but

studies do.

We need more studies. SCD always comes out on top!

Carol F.

Celiac, SCD 5 yrs.

[Guest guest]

-FIRST Of all thank you so much for all your hard work with this.My

son in7 yrs old and has UC and I feel so blessed to have this food

option for him. He is now off steroids and enema. Thank you again

debbie-- In pecanbread , Debora Holt

wrote:

> I've been thinking of ways to influence a study being done on SCD,

and

> mostly am frustrated by the CCFA (Crohn's and Colitis Foundation of

> America)'s portrayal of this diet, and continued lack of interest.

So I

> am writing a petition to the CCFA demanding them to help fund a

study on

> SCD. Here is the first draft, and I want feedback. I haven't

finished

> the footnotes yet, and I will probably have to remove the

monosaccharide

> part about elemental diets, because I don't think the elemental diet

> they use is truly monosaccharide (anyone have better information

about

> what they use?) When it is finished, I will post it on a petition

> website, and you can go there to add your signature. When we've

> collected a substantial number, I'm planning on contacting the

media,

> political representatives (any suggestions to these is much

> appreciated), etc., and then possibly have a representative of each

> patient subset who has benefited from SCD. (adult IBD patient,

child IBD

> patient with parent, recovered autistic child with parent, etc.)

and we

> can hand deliver it to CCFA with hopefully, the media present.

>

> Now, if anyone has more information about CCFA and how they could

> contribute to funding, or CCFA celebrities who have been active who

may

> be interested in signing, or doctors who use SCD who would be

interested

> in signing, or whether CCFA even has a moral obligation to help

fund a

> study, please send it to me. I don't want to do this without

researching

> all bases, and have it fall flat. Thanks, and please provide

feedback.

> If Elaine is truly dying, it would be nice to move this along.

>

> Debora

>

> PETITION to CCFA:

>

> We, the people suffering from Inflammatory Bowel Disease, celiac

> disease, diverticulitis, IBS, and autism, or the parents,

caretakers,

> children, family members or friends of people suffering from the

above

> diseases, who are benefiting from the Specific Carbohydrate Diet

(SCD),

> demand that the CCFA contribute to, organize, help fund, or

encourage

> the funding of a proper, scientific study of the SCD. We feel that

an

> organization dedicated to helping find a cure to these devastating

> diseases should not continue to overlook a potential treatment that

will

> benefit no institution financially, and in fact, is failing in its

> mission statement by ignoring countless patients, physicians, and

> researchers who are improving or have patients improving from this

diet.

> We believe that every new patient diagnosed has the right to be

informed

> of dietary changes he/she can make that may help his/her disease. We

> believe that in the meantime, CCFA should provide adequate media

> coverage on this diet, and not incorrectly refer to the Specific

> Carbohydrate diet as a low carbohydrate diet, or low calorie diet,

when

> it is not, which may potentially discourage new patients from

trying the

> diet due to false information. We demand immediate investigation

into a

> diet that provides gluten-free, monosaccharide carbohydrates with a

high

> nutritional content as well as inexpensive, daily probiotics in the

form

> of homemade yogurt, when the latest research points to the benefits

of

> probiotics1 and the increased prevalence of gluten and disaccharide

> intolerance among patients2, and it has long been proven that an

> elemental, monosaccharide diet is an effective way to achieve

remission

> in IBD3. We demand that the CCFA stop posting recipes that include

> sugar, when sucrose consumption has been linked to the potential

onset

> of Crohn's disease4, and flour products, when celiac has been found

in

> 30% of Crohn's disease patients5. We demand serious consideration of

> diet as a form of therapy, and expect the CCFA to participate in

> vigorous research in order to discover the true merits of the SCD,

so it

> can no longer be referred to as an untested, fad diet. We will no

longer

> suffer in silence, or watch countless other people suffering, when

> something as simple as a dietary change may help alleviate their

> discomfort, and may improve their quality of life significantly. Do

the

> research. Help fund a study. It is gross incompetence to continue

> ignoring the thousands of us who have found significant improvement

on

> this diet. Millions of suffering patients are waiting.

[Guest guest]

Debora-

Just wanted to tell you that many doctors and CCFA will not advocate the SCD

diet due to there are no proven studies done to support it. Traditional doctors

can onlyh recommend things based on actual medical studies. My son's pediatric

GI doctor can not recommend it, but is supportive of it based on results that

she has seen. I think that the fact that CCFA even mentions this diet is tried

by some gives the info. to those that may never even discover the diet. I do

agree that more testimonials need to be put out there for those that could

really benefit.

Suzanne, mother of 2, on SCD 7 months, son with colitis

Debora Holt dholt@...> wrote:

There was a recent article on CCFA (Crohn's and Colitis Foundation of

America) about SCD. It listed a bunch of mistakes, like calling SCD

" the ultimate in low carb " and low calorie, and basically says, it may

work, there's not been any proven scientific studies, ask your

doctor... " I wrote them a scathing letter, with no response. So, my

latest idea is to send a petition to CCFA, and bringing it in person

with various representatives of those benefitting from SCD (an adult

person with IBD who's recovered, a child with IBD who's medicine and

symptom free on SCD, an autistic child who's recovered, etc.), and

contacting various media, senators, etc. who would be interested in

covering CCFA's reception of the petition. So, enclosed is a copy of

the first draft, minus the footnotes (I'm working on those now). I

think I'm going to have to change a few things; the elemental diet isn't

just monosaccharide (anyone have more information as to the content of

those elemental feeds?) Feedback is most encouraged. When we've all

decided on a good petition content, I will post it on a website to

collect signatures. Anyone who has M.D.'s who would be interested in

signing, or those of you with links of doctors who are using SCD, or

have links to celebrities who would be interested in signing, or

anything else relevant, please email me. Also, if people have more

information about CCFA's role in doing studies, or anything that would

help the petition idea, write me. I don't want to leave any stones

unturned, and if this is done, it should be done with as much fanfare as

possible. If Elaine is truly dying, it would be nice to get something

moving, if it helps at all.

thanks, Debora

adult with Crohn's disease, 17 years SCD 2 years

PETITION: (first draft)

We, the people suffering from Inflammatory Bowel Disease, celiac

disease, diverticulitis, IBS, and autism, or the parents, caretakers,

children, family members or friends of people suffering from the above

diseases, who are benefiting from the Specific Carbohydrate Diet (SCD),

demand that the CCFA contribute to, organize, help fund, or encourage

the funding of a proper, scientific study of the SCD. We feel that an

organization dedicated to helping find a cure to these devastating

diseases should not continue to overlook a potential treatment that will

benefit no institution financially, and in fact, is failing in its

mission statement by ignoring countless patients, physicians, and

researchers who are improving or have patients improving from this diet.

We believe that every new patient diagnosed has the right to be informed

of dietary changes he/she can make that may help his/her disease. We

believe that in the meantime, CCFA should provide adequate media

coverage on this diet, and not incorrectly refer to the Specific

Carbohydrate diet as a low carbohydrate diet, or low calorie diet, when

it is not, which may potentially discourage new patients from trying the

diet due to false information. We demand immediate investigation into a

diet that provides gluten-free, monosaccharide carbohydrates with a high

nutritional content as well as inexpensive, daily probiotics in the form

of homemade yogurt, when the latest research points to the benefits of

probiotics1 and the increased prevalence of gluten and disaccharide

intolerance among patients2, and it has long been proven that an

elemental, monosaccharide diet is an effective way to achieve remission

in IBD3. We demand that the CCFA stop posting recipes that include

sugar, when sucrose consumption has been linked to the potential onset

of Crohn's disease4, and flour products, when celiac has been found in

30% of Crohn's disease patients5. We demand serious consideration of

diet as a form of therapy, and expect the CCFA to participate in

vigorous research in order to discover the true merits of the SCD, so it

can no longer be referred to as an untested, fad diet. We will no longer

suffer in silence, or watch countless other people suffering, when

something as simple as a dietary change may help alleviate their

discomfort, and may improve their quality of life significantly. Do the

research. Help fund a study. It is gross incompetence to continue

ignoring the thousands of us who have found significant improvement on

this diet. Millions of suffering patients are waiting.

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

I thought when Drs. Haas published their work, they included 670 medical

references in support of this diet, and were given an award from the

American Academy of Pediatrics for their work.

Aren't there any proven studies in those 670 medical references?

Marilyn

Re: PETITION to CCFA; first draft

> Debora-

> Just wanted to tell you that many doctors and CCFA will not advocate the

> SCD diet due to there are no proven studies done to support it.

> Traditional doctors can onlyh recommend things based on actual medical

> studies. My son's pediatric GI doctor can not recommend it, but is

> supportive of it based on results that she has seen. I think that the

> fact that CCFA even mentions this diet is tried by some gives the info. to

> those that may never even discover the diet. I do agree that more

> testimonials need to be put out there for those that could really benefit.

> Suzanne, mother of 2, on SCD 7 months, son with colitis

>

> Debora Holt dholt@...> wrote:

> There was a recent article on CCFA (Crohn's and Colitis Foundation of

> America) about SCD. It listed a bunch of mistakes, like calling SCD

> " the ultimate in low carb " and low calorie, and basically says, it may

> work, there's not been any proven scientific studies, ask your

> doctor... " I wrote them a scathing letter, with no response. So, my

> latest idea is to send a petition to CCFA, and bringing it in person

> with various representatives of those benefitting from SCD (an adult

> person with IBD who's recovered, a child with IBD who's medicine and

> symptom free on SCD, an autistic child who's recovered, etc.), and

> contacting various media, senators, etc. who would be interested in

> covering CCFA's reception of the petition. So, enclosed is a copy of

> the first draft, minus the footnotes (I'm working on those now). I

> think I'm going to have to change a few things; the elemental diet isn't

> just monosaccharide (anyone have more information as to the content of

> those elemental feeds?) Feedback is most encouraged. When we've all

> decided on a good petition content, I will post it on a website to

> collect signatures. Anyone who has M.D.'s who would be interested in

> signing, or those of you with links of doctors who are using SCD, or

> have links to celebrities who would be interested in signing, or

> anything else relevant, please email me. Also, if people have more

> information about CCFA's role in doing studies, or anything that would

> help the petition idea, write me. I don't want to leave any stones

> unturned, and if this is done, it should be done with as much fanfare as

> possible. If Elaine is truly dying, it would be nice to get something

> moving, if it helps at all.

>

> thanks, Debora

> adult with Crohn's disease, 17 years SCD 2 years

>

> PETITION: (first draft)

>

> We, the people suffering from Inflammatory Bowel Disease, celiac

> disease, diverticulitis, IBS, and autism, or the parents, caretakers,

> children, family members or friends of people suffering from the above

> diseases, who are benefiting from the Specific Carbohydrate Diet (SCD),

> demand that the CCFA contribute to, organize, help fund, or encourage

> the funding of a proper, scientific study of the SCD. We feel that an

> organization dedicated to helping find a cure to these devastating

> diseases should not continue to overlook a potential treatment that will

> benefit no institution financially, and in fact, is failing in its

> mission statement by ignoring countless patients, physicians, and

> researchers who are improving or have patients improving from this diet.

> We believe that every new patient diagnosed has the right to be informed

> of dietary changes he/she can make that may help his/her disease. We

> believe that in the meantime, CCFA should provide adequate media

> coverage on this diet, and not incorrectly refer to the Specific

> Carbohydrate diet as a low carbohydrate diet, or low calorie diet, when

> it is not, which may potentially discourage new patients from trying the

> diet due to false information. We demand immediate investigation into a

> diet that provides gluten-free, monosaccharide carbohydrates with a high

> nutritional content as well as inexpensive, daily probiotics in the form

> of homemade yogurt, when the latest research points to the benefits of

> probiotics1 and the increased prevalence of gluten and disaccharide

> intolerance among patients2, and it has long been proven that an

> elemental, monosaccharide diet is an effective way to achieve remission

> in IBD3. We demand that the CCFA stop posting recipes that include

> sugar, when sucrose consumption has been linked to the potential onset

> of Crohn's disease4, and flour products, when celiac has been found in

> 30% of Crohn's disease patients5. We demand serious consideration of

> diet as a form of therapy, and expect the CCFA to participate in

> vigorous research in order to discover the true merits of the SCD, so it

> can no longer be referred to as an untested, fad diet. We will no longer

> suffer in silence, or watch countless other people suffering, when

> something as simple as a dietary change may help alleviate their

> discomfort, and may improve their quality of life significantly. Do the

> research. Help fund a study. It is gross incompetence to continue

> ignoring the thousands of us who have found significant improvement on

> this diet. Millions of suffering patients are waiting.

>

>

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

> _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

> websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

>

>

>

[Guest guest]

scd traces its origins back to the harvey-banting diet of about 1870

the harvey banting diet worked and was ostracised by the medical

community of the day

and evolved into scd which is the 'lay' diet so to speak

and gfcf the 'medical' diet so to speak

i think that is enough to tell you how things lie

harvey, although a doctor was ostracised by the medical community

if you have to go to a doctor you are in fact entering pallative care

if you want yourself or children to get well you have to sort it out

yourself

who really cares about you except you?

where are the doctors on these boards?

medicine is all about money and when you look at organisations like

the CCFA they are people who are so injured they have sold thier

souls to money as the cure and thier own core value system and act

treacherously to anything that shows them up as being slack and not

doing the work or taking responsiblity themselves

why some moms on these boards put an effort into these bad people i

do not know, but then you had the 'if only oprah would do a program

on autism' movement

oprah is of course on spectrum and in deep denial about it and won't

have anything to do with autism as well as being terminally shallow

and now will no doubt count her billions from a gulliable public on

some golden isle in the bahamas or similar

> > There was a recent article on CCFA (Crohn's and Colitis

Foundation of

> > America) about SCD. It listed a bunch of mistakes, like calling

SCD

> > " the ultimate in low carb " and low calorie, and basically says,

it may

> > work, there's not been any proven scientific studies, ask your

> > doctor... " I wrote them a scathing letter, with no response. So,

my

> > latest idea is to send a petition to CCFA, and bringing it in

person

> > with various representatives of those benefitting from SCD (an

adult

> > person with IBD who's recovered, a child with IBD who's medicine

and

> > symptom free on SCD, an autistic child who's recovered, etc.), and

> > contacting various media, senators, etc. who would be interested

in

> > covering CCFA's reception of the petition. So, enclosed is a

copy of

> > the first draft, minus the footnotes (I'm working on those now).

I

> > think I'm going to have to change a few things; the elemental

diet isn't

> > just monosaccharide (anyone have more information as to the

content of

> > those elemental feeds?) Feedback is most encouraged. When we've

all

> > decided on a good petition content, I will post it on a website to

> > collect signatures. Anyone who has M.D.'s who would be

interested in

> > signing, or those of you with links of doctors who are using SCD,

or

> > have links to celebrities who would be interested in signing, or

> > anything else relevant, please email me. Also, if people have

more

> > information about CCFA's role in doing studies, or anything that

would

> > help the petition idea, write me. I don't want to leave any

stones

> > unturned, and if this is done, it should be done with as much

fanfare as

> > possible. If Elaine is truly dying, it would be nice to get

something

> > moving, if it helps at all.

> >

> > thanks, Debora

> > adult with Crohn's disease, 17 years SCD 2 years

> >

> > PETITION: (first draft)

> >

> > We, the people suffering from Inflammatory Bowel Disease, celiac

> > disease, diverticulitis, IBS, and autism, or the parents,

caretakers,

> > children, family members or friends of people suffering from the

above

> > diseases, who are benefiting from the Specific Carbohydrate Diet

(SCD),

> > demand that the CCFA contribute to, organize, help fund, or

encourage

> > the funding of a proper, scientific study of the SCD. We feel

that an

> > organization dedicated to helping find a cure to these devastating

> > diseases should not continue to overlook a potential treatment

that will

> > benefit no institution financially, and in fact, is failing in its

> > mission statement by ignoring countless patients, physicians, and

> > researchers who are improving or have patients improving from

this diet.

> > We believe that every new patient diagnosed has the right to be

informed

> > of dietary changes he/she can make that may help his/her disease.

We

> > believe that in the meantime, CCFA should provide adequate media

> > coverage on this diet, and not incorrectly refer to the Specific

> > Carbohydrate diet as a low carbohydrate diet, or low calorie

diet, when

> > it is not, which may potentially discourage new patients from

trying the

> > diet due to false information. We demand immediate investigation

into a

> > diet that provides gluten-free, monosaccharide carbohydrates with

a high

> > nutritional content as well as inexpensive, daily probiotics in

the form

> > of homemade yogurt, when the latest research points to the

benefits of

> > probiotics1 and the increased prevalence of gluten and

disaccharide

> > intolerance among patients2, and it has long been proven that an

> > elemental, monosaccharide diet is an effective way to achieve

remission

> > in IBD3. We demand that the CCFA stop posting recipes that include

> > sugar, when sucrose consumption has been linked to the potential

onset

> > of Crohn's disease4, and flour products, when celiac has been

found in

> > 30% of Crohn's disease patients5. We demand serious consideration

of

> > diet as a form of therapy, and expect the CCFA to participate in

> > vigorous research in order to discover the true merits of the

SCD, so it

> > can no longer be referred to as an untested, fad diet. We will no

longer

> > suffer in silence, or watch countless other people suffering, when

> > something as simple as a dietary change may help alleviate their

> > discomfort, and may improve their quality of life significantly.

Do the

> > research. Help fund a study. It is gross incompetence to continue

> > ignoring the thousands of us who have found significant

improvement on

> > this diet. Millions of suffering patients are waiting.

> >

> >

> >

> >

> >

> >

> > For information on the Specific Carbohydrate Diet, please read

the book

> > _Breaking the Vicious Cycle_ by Elaine Gottschall and read the

following

> > websites:

> > http://www.breakingtheviciouscycle.info

> > and

> > http://www.pecanbread.com

> >

> >

> >

> >

> >

[Guest guest]

Why do you think that Oprah is on the spectrum? I know that I am somewhat

on the spectrum, although undiagnosed. I haven't noticed any behaviors in

Oprah that cause me to believe that she is on the spectrum, but am open to

the possibility that I have missed them.

Re: PETITION to CCFA; first draft

>

> scd traces its origins back to the harvey-banting diet of about 1870

>

> the harvey banting diet worked and was ostracised by the medical

> community of the day

>

> and evolved into scd which is the 'lay' diet so to speak

>

> and gfcf the 'medical' diet so to speak

>

> i think that is enough to tell you how things lie

>

> harvey, although a doctor was ostracised by the medical community

>

> if you have to go to a doctor you are in fact entering pallative care

>

> if you want yourself or children to get well you have to sort it out

> yourself

>

> who really cares about you except you?

>

> where are the doctors on these boards?

>

> medicine is all about money and when you look at organisations like

> the CCFA they are people who are so injured they have sold thier

> souls to money as the cure and thier own core value system and act

> treacherously to anything that shows them up as being slack and not

> doing the work or taking responsiblity themselves

>

> why some moms on these boards put an effort into these bad people i

> do not know, but then you had the 'if only oprah would do a program

> on autism' movement

>

> oprah is of course on spectrum and in deep denial about it and won't

> have anything to do with autism as well as being terminally shallow

> and now will no doubt count her billions from a gulliable public on

> some golden isle in the bahamas or similar

>

>

>

>

>

>> > There was a recent article on CCFA (Crohn's and Colitis

> Foundation of

>> > America) about SCD. It listed a bunch of mistakes, like calling

> SCD

>> > " the ultimate in low carb " and low calorie, and basically says,

> it may

>> > work, there's not been any proven scientific studies, ask your

>> > doctor... " I wrote them a scathing letter, with no response. So,

> my

>> > latest idea is to send a petition to CCFA, and bringing it in

> person

>> > with various representatives of those benefitting from SCD (an

> adult

>> > person with IBD who's recovered, a child with IBD who's medicine

> and

>> > symptom free on SCD, an autistic child who's recovered, etc.), and

>> > contacting various media, senators, etc. who would be interested

> in

>> > covering CCFA's reception of the petition. So, enclosed is a

> copy of

>> > the first draft, minus the footnotes (I'm working on those now).

> I

>> > think I'm going to have to change a few things; the elemental

> diet isn't

>> > just monosaccharide (anyone have more information as to the

> content of

>> > those elemental feeds?) Feedback is most encouraged. When we've

> all

>> > decided on a good petition content, I will post it on a website to

>> > collect signatures. Anyone who has M.D.'s who would be

> interested in

>> > signing, or those of you with links of doctors who are using SCD,

> or

>> > have links to celebrities who would be interested in signing, or

>> > anything else relevant, please email me. Also, if people have

> more

>> > information about CCFA's role in doing studies, or anything that

> would

>> > help the petition idea, write me. I don't want to leave any

> stones

>> > unturned, and if this is done, it should be done with as much

> fanfare as

>> > possible. If Elaine is truly dying, it would be nice to get

> something

>> > moving, if it helps at all.

>> >

>> > thanks, Debora

>> > adult with Crohn's disease, 17 years SCD 2 years

>> >

>> > PETITION: (first draft)

>> >

>> > We, the people suffering from Inflammatory Bowel Disease, celiac

>> > disease, diverticulitis, IBS, and autism, or the parents,

> caretakers,

>> > children, family members or friends of people suffering from the

> above

>> > diseases, who are benefiting from the Specific Carbohydrate Diet

> (SCD),

>> > demand that the CCFA contribute to, organize, help fund, or

> encourage

>> > the funding of a proper, scientific study of the SCD. We feel

> that an

>> > organization dedicated to helping find a cure to these devastating

>> > diseases should not continue to overlook a potential treatment

> that will

>> > benefit no institution financially, and in fact, is failing in its

>> > mission statement by ignoring countless patients, physicians, and

>> > researchers who are improving or have patients improving from

> this diet.

>> > We believe that every new patient diagnosed has the right to be

> informed

>> > of dietary changes he/she can make that may help his/her disease.

> We

>> > believe that in the meantime, CCFA should provide adequate media

>> > coverage on this diet, and not incorrectly refer to the Specific

>> > Carbohydrate diet as a low carbohydrate diet, or low calorie

> diet, when

>> > it is not, which may potentially discourage new patients from

> trying the

>> > diet due to false information. We demand immediate investigation

> into a

>> > diet that provides gluten-free, monosaccharide carbohydrates with

> a high

>> > nutritional content as well as inexpensive, daily probiotics in

> the form

>> > of homemade yogurt, when the latest research points to the

> benefits of

>> > probiotics1 and the increased prevalence of gluten and

> disaccharide

>> > intolerance among patients2, and it has long been proven that an

>> > elemental, monosaccharide diet is an effective way to achieve

> remission

>> > in IBD3. We demand that the CCFA stop posting recipes that include

>> > sugar, when sucrose consumption has been linked to the potential

> onset

>> > of Crohn's disease4, and flour products, when celiac has been

> found in

>> > 30% of Crohn's disease patients5. We demand serious consideration

> of

>> > diet as a form of therapy, and expect the CCFA to participate in

>> > vigorous research in order to discover the true merits of the

> SCD, so it

>> > can no longer be referred to as an untested, fad diet. We will no

> longer

>> > suffer in silence, or watch countless other people suffering, when

>> > something as simple as a dietary change may help alleviate their

>> > discomfort, and may improve their quality of life significantly.

> Do the

>> > research. Help fund a study. It is gross incompetence to continue

>> > ignoring the thousands of us who have found significant

> improvement on

>> > this diet. Millions of suffering patients are waiting.

>> >

>> >

>> >

>> >

>> >

>> >

>> > For information on the Specific Carbohydrate Diet, please read

> the book

>> > _Breaking the Vicious Cycle_ by Elaine Gottschall and read the

> following

>> > websites:

>> > http://www.breakingtheviciouscycle.info

>> > and

>> > http://www.pecanbread.com

>> >

>> >

>> >

>> >

>> >

[Guest guest]

she's sorta superfunctioning but you only have to look at her love

life and not wanting children and some of the really bizarre things

she does

very emotionally distanced which is how she was able to be so

successful

theres millions fo years of evolution behind the female needing to

have children and this is a huge sign for autistic severity in women

but it is a blurring of female and male thought modes that is the

most signifciant spectrum trait and you can see this in her if you

work through it a bit

leonardo de vinci used the take his 'mona lisa' picture with him when

he travelled, what was it saying? it is in fact a self portrait of

him as a woman.

> Why do you think that Oprah is on the spectrum? I know that I am

somewhat

> on the spectrum, although undiagnosed. I haven't noticed any

behaviors in

> Oprah that cause me to believe that she is on the spectrum, but am

open to

> the possibility that I have missed them.

>

>

>

>

[Guest guest]

> harvey, although a doctor was ostracised by the medical community

>

> if you have to go to a doctor you are in fact entering pallative

care

>

> if you want yourself or children to get well you have to sort it

out

> yourself

>

> who really cares about you except you?

>

> where are the doctors on these boards?

>

> medicine is all about money and when you look at organisations like

> the CCFA they are people who are so injured they have sold thier

> souls to money as the cure and thier own core value system and act

> treacherously to anything that shows them up as being slack and not

> doing the work or taking responsiblity themselves

>

> why some moms on these boards put an effort into these bad people i

> do not know, but then you had the 'if only oprah would do a program

> on autism' movement

>

> oprah is of course on spectrum and in deep denial about it and

won't

> have anything to do with autism as well as being terminally shallow

> and now will no doubt count her billions from a gulliable public on

> some golden isle in the bahamas or similar

I could hug you for this one, and often have shared these

sentiments with Elaine

who reminds me that there are times when mainstream medical

intervention is important.

In my own case, I was not listened to by my family doctor and

allergist and found my own

way with SCD plus " Dr. Google, " angel of the Internet.

I did get wholehearted support from a naturopath and a psychiatrist.

Now my family

doctor respects the protocols I use.

She is showing respect for what I personally accomplished with SCD as

well as other health

challenges, but that is not helping other patients.

Because of my frequent complaints about latex allergy, my Family

Phusician is using vinyl

gloves for the entire office instead of latex now and not prescribing

anti biotic for

everything. I am finally going to give her a copy of BTVC although I

should take the

attitude that she should buy it herself. =Maybe she is too busy

lunching with the

pharmaseutical sales people and examining their free samples LOL!

There are some scientific studies published now on SCD but far from

enough to satisfy the

mainstreamers.

Carol F.

Celiac, SCD 5 years

[Guest guest]

> I thought when Drs. Haas published their work, they included 670 medical

> references in support of this diet, and were given an award from the

> American Academy of Pediatrics for their work.

>

> Aren't there any proven studies in those 670 medical references?

I'm not sure studies from the 1920's and 30's would be accepted as

" proof " . I'm hoping for more recent ones, and am starting a collection.

If anyone has anything to send to me regarding what studies in the

world have shown that these carbohydrates really do influence the gut

bacteria and why a large SCD study should be done, please send.

Specifically, among the autism research, I'm sure there is a large body

of evidence concerning gluten/casein, but have been there studies on

autistic children with IBD that have recovered (or had their IBD healed)

and shown that removal of these carbohydrates were the healing factor?

I'm working on a petition to send to the Crohn's and Colitis Foundation

of America (CCFA) to urge them to help fund a study on SCD. I'm just

wanting to put an article together to send to senators, the media, etc.,

to publicize this petition to show that indeed, there are many of us who

would welcome a large, controlled study that shows SCD's effectiveness,

so this institution will stop saying " there is no valid medical research

to show diet's effectiveness on these diseases " . And there are probably

thousands of new patients every day who have no idea that what they eat

could greatly influence their disease.

Debora