PETITION to CCFA; first draft

[Guest guest]

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.