RE: research was Re: OT Staying true to SCD tm

May 30, 2006

I think the studies Carol proposes could be of some use, but it is

expensive, and quite frankly, in the general autism treatment world,

there hasn't been a whole lot of these types of comparisons between any

treatment, education, dietary or otherwise.

It seems the first place to start with SCD study is to build on the

current anecdotal data and study SCD thus far for what it was initially

developed for: celiac and UC, then expand research from there.

Unpublished studies hold little credence, except in the people who

believe in their conclusions (I see this in autism circles often and am

myself guilty of this.) So the ultimate goal is that whatever studies

are done with SCD, they are published in a peer review journal.

While Elaine was a scientist and extensively studies the mechanisms by

how this work such as the chemistry, we don't have any good evidence

other than parent testimony to support that the conclusions in the lab

apply to the human body.

Case studies of individual people who have been greatly improved by SCD

with the lab reports to prove it would be a good start. Studies do not

need to be the full blown case-control double blind crossover studies

that cost so much money. There are plenty of case studies noted in

medical journals. Maybe some of the GI doctors who are SCD friendly

could be approached? Dr. Buie comes to mind, or any of the GI docs who

treated some of these patients who were cured or greatly improved by SCD

from celiac or UC.

Becky

mom to Noah (6, HFA) and (3, NT)

SCD 3 months

> > > Here are studies that COULD be done.Some have been tried before

> but not under properly

> > controlled conditions:

> >

> > SCD versus GFCF

> > SCD eliminating high oxalate foods versus just SCD

> > SCD with probiotics and enzymes versus just SCD

> > SCD with selected additional treatment (eg chelation) against just

> SCD.

> > SCD among casein tolerant using yogurt against SCD casein tolerant

> with no yogurt

> >

> > We could devise countless others but haven't the resources at this

> time.

May 30, 2006

What about people like us?

The doctors couldn't figure out why Ben was pooping himself to death. It

started as a vaccination reaction that never ended, he got the MMR, and within a

day, had a high fever for three weeks, bumps all over his body, couldn't barely

eat, and no one was willing to write down " vaccination reaction " , instead,

probing him for more and more tests. He had a fever for over 3 weeks that was

dangerously high.

For my Hunter, we have all paperwork and documentation of metal poisoning from

the EPA and ARSARCO, INC. They still deny the PICA and food selectivity started

with the massive poisoning of the meltoff, although lead levels and above

behavoirs all happened in the space of less than a month. I knew something was

wrong before I knew about lead.

What I am getting out, I don't even know how some of the damage to the immune

system can even be charted. My own body goes through bouts of attacking itself

and moving inflammation, but I do not have lupus or antiphospholipid syndrom,

etc.

How do you get a baseline on some of this stuff. There are my medical records

that show my history and what I went in for, what I have had done, what

medications are prescribed.

Alot of people have untestable celiac disease. Living on the superfund, one

thing I noticed, an awful lot of failure to thrive, but never would test as

celiac, but clearly was some form of it.

I bring this up, I would love to see more baselines and tests, but there is

alot of murky water here. People like us, if you read our medical records, show

some tragic things but undiagnosable.

After having cancer, a few weeks after having a stroke, all my bloodwork came

in....I was told over the phone I had the blood of a healthy person, yet I am

sitting there, and can barely sit upright and can't use the left side of my

body.

I don't know it is so easy to do the SCD baseline, I think someone ought to do

it, but it should be done with the realization, not everyone is going to fit

into near before and after boxes. Not everything represents on paper.

This last january and february, I was very sick, lost weight and all that, and

when I went in to the hospital, we started down the road of labs...again, this

is normal, this is healthy, and I stopped with further labs. I could be hanging

on by my last piece of sinew, and my tests would show I am fine and normal.

I am just bringing this up, because not everyone is so testable, I was

bleeding in the head and no one could figure it out years ago. I don't believe

that every case of celiac or autism or UC is exactly the same either. I have

seen people with autism become well with other traditional diets, why it works

for one, and not another, there are alot of factors there.

Just wanted to add this to the discussion.

Summer

Becky Grant-Widen wrote: