PETITION to CCFA; first draft

[Guest guest]

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.