Letter from Binstock: SCD research

[Guest guest]

Carol/Froggypeach... and others... since the topic of studies has come up, I

thought some of you might be interested to read, or re-read this message that I

had saved. Please note the two messages at the bottom... e-mails from parents.

One of them is Tamaro, from Seattle... whom I've had the pleasure to

meet and work with at the DAN! conference in Portland, Oregon a few years ago

(where I also had the pleasure of meeting and chatting with Binstock).

At that time, had test results on both of her sons, after one year on

SCD, and baseline results from prior. I only wish I had something in e-mailable

format to send, that listed those results... in full color graphs to go with the

numbers. A site familiar to many of you. A number of parents, and doctors, who

stopped by the pecanbread booth that day were mighty impressed at the much

improved lower levels of gut pathogens across the board on both boys. Jaws were,

in fact, dropping.

Maybe Mimi has saved a post from .... or it might be searchable in the

Lyris archives. I'm sorry the following post is so long.... but it's well worth

the space it's going to take up.

Patti

Letter from Binstock: SCD vs GFCF

Letter from Binstock:/ Re: one month

trial complete

Binstock is a very dedicated autism

researcher and co author of

" Children with Starving Brains " ( Mc

Candless is the other

author

of this book).

Binstock thoroughly researched the science

behind SCD. She read

all

the citations mentioned in " Breaking the Vicious

Cycle " and gave a

glowing

talk about SCD at a conference in Cape Cod.

Below a letter from Binstock: On Tue, 30 Sep

2003 09:25:08

-0600,

" Binstock " said:

Folks,

The SCD appears to be an important contribution for

a subgroup of

autistic

and autism-spectrum kids. The choice GFCF or SCD

ought be offered

parents

early in the child's bio-oriented treatment. Here's

an excerpt from a

letter

I wrote to

Jaquelyn McCandless, MD, this morning, plus some

additional comments,

plus

two letters from parents.

-------

There is much substantiation regarding genetic

(rare) and acquired (not

so

rare) disaccharidase deficiencies. Once an early

injury to intestinal

tissue

occurs, there is a risk of hypersecretion of mucus,

a reduction in

villi

height, and a reduction in disaccharidase enzymes,

thereby changing

nutrient

availability to the host (eg, the infant, toddler,

or child) and

changing

nutrient availability

for gut bugs, thereby changing gut-bugs colonization

patterns.

There is peer-reviewed medical literature about how

a person's gut-bugs

profile is shaped by what's in his or her diet. I'm

not yet an expert

on

specific bugs' dietary preferences, especially in

regard to

colonizations

arising amidst acquired disaccharidase deficiencies.

I don't know how

much

med lit there

is on this point. In my initial fetching of

articles, I've found a few

in

this direction, but I've only just begun.

There is some degree of causal overlap between a

GFCF diet's effects

and an

SCD diet's effects -- which helps account for why

many parents report

GFCF

helped somewhat, even as some parents report major

improvements after

discarding GFCF and initiating SCD.

That an SCD-beneficial subgroup exists suggests that

the option SCD or

GFCF

ought be introduced very early in the child's

treatment protocol. For

instance, some parents describe years of GF or GFCF

then only much

later

finding that major improvements in stools, mood, and

cognition occurred

after

initiating the SCD. For that size-unknown subgroup

of children, their

alleviation of or

recovery from autism-related traits may well have

been hastened and

increased if they had had the SCD much sooner.

There is a major difference between food allergy

which is Ig-mediated

and

food intolerance which is non-immunologic. A food

allergy panel misses

kids

with non-immunologic food intolerance.

Many parents are becoming angry that they were

oversold on GFCF and

were not

told about the SCD. I don't think that anyone is to

" blame " for

recommending

GFCF -- because to one degree or another, it has

helped many kids. See

parental reports of GFCF efficacy on ARI's webpage.

And virtually all

of us

missed the well documented points (and primary

citations) in Elaine's

" Breaking the

Vicious Cycle " .

A second major point is that the SCD may (for at

least some kids, many

kids?) allow the redevelopment of a healthier

intestinal colonization.

Perhaps (as the SCD advocates summarize), adverse

colonization is

initiated,

augmented, and sustained by sugars and starches that

are " permitted " within the GFCF diet. Obtaining the

peer reviewed

citations

on this point is very important. Obtaining

comparative OAT tests

(before/after SCD) and comparative CDSA tests will

also be instructive. A potential ramification is

that many of the foods

allowed by the GFCF diet are a major contributing

factor to the

gut-bugs

that persist so defiantly.

Pam Ferro will soon have some kids who had the OAT

several months ago

while

GF and not SCD and who will soon have a repeat OAT

after 3-4 months on

the

SCD. If the OAT actually reflects specific types of

gut bugs, and if

the SCD

is changing intestinal colonization profiles, then

some categories of

the

post-SCD OATvalues ought reflect some degree of

SCD-modified

colonization.

Lord and Sid Finegold and Ellen Bolte may be

able to help in

this

regard. At least

something (for some kids) is changing by the SCD --

because their stool

texture is changing and, as this occurs, their

behaviors and cognition

are

improving. Will the OAT reflect those changes? We'll

soon know. Will

the

CDSA reflect those changes?

After perusing Elaine's book and many of its primary

citations, I feel

similarly to how I felt after reading Ellen Bolte's

first draft, after

reading the thimerosal paper's first draft -- ie,

the parents have

nailed

something important. Regarding SCD, Elaine

Gottschall is the first

parent to

call attention to the disaccharidase deficiency

folks and to do so via

numerous, well interpreted citations from

peer-reviewed journals. The

second

phase of parents are those like Pam Ferro, Mimi, and

others -- parents

who

recognized the potential importance of the SCD and

who acted upon the

SCD

and who, in many instances, are finding that indeed,

the SCD is

beneficial,

even (as first reports indicate) is more beneficial

than GFCF (at least

for

a size-unknown subset of ASD kids).

Elaine Gottschall's first several chapters of the

book " Breaking the Vicious Cycle " (and the primary

citations she offers)

comprise a fine

scientific

treatise, well worth perusing by DAN-oriented

physicians, researchers,

and

parents.

Breaking the Vicious Cycle: Intestinal Health

Through Diet by Elaine

Gloria

Gottschall,

(Illustrator),

Marilyn (Illustrator)

http://www.amazon.com/exec/obidos/tg/detail/-/0969276818/

Two sample emails:

- I just wanted to write back and clarify

something. I didn't

start

SCD because GFCF wasn't working. In fact GFCF had

nothing at all to do

with

my decision to start SCD. I started SCD last summer

because I had spent

the

prior two years making zero headway against my son's

yeast and bacteria

levels. I knew that microbial overgrowth was a major

factor in his

autism

and I recognized

that he could improve only if his yeast & bacteria

levels were reduced.

SCD

showed me that diet is

critical in normalizing autistic children's

intestinal flora.

Quite frankly, after we had been on SCD for awhile

and I understood it

better, I began to see what a disservice GFCF has

done to autistic

children

with its tolerance of sugar and encouragement of

" alternative " starches

such

as rice and potatoes. Those are the very foods that

are making our kids

sick.

So I personally think it is a distraction to ask

people if they use SCD

because GFCF is ineffective. SCD is something else

entirely: It is the

most

healthy & superior way to " clean the gut " that

anyone could devise. And

I

have found that a clean gut equals a healthier

child.

I hope we get a chance to meet at the DAN

Conference.

Tamaro

Mercer Island, Washington

Mom to , 6, ASD-recovered, and , 4

Crohn's

--------

Hello .

As you are looking at the SCD diet, I thought you

might be interested

in our

findings.

Two or more years ago we started our son Ralph ( now

13 y/old ) on the

SCD

diet out of desperation. He was getting more and

more agitated and

violent

to others and himself - I should add that he had

been on a g/c free

diet for

several years previously. We noticed very quickly

that it was helping.

He

became much more calm and happier. It gave a much

more level playing

field

in which to try to address his problems. The

interesting thing, is that

because Ralph likes food, he would always want to

eat what everyone

else

was eating, so I volunteered to eat the same as him

at mealtimes. After

about four weeks of this, I suddenly realised that

the pain that I had

continuously in my knees - arthritis/rheumatism? -

not sure, I hadn't

been

to the doctors about it, had gone. I was very

surprised and began to

examine

my own petty ailments. I discovered that my

previously " always blocked

up "

nose was now clear, and my slight hand tremors had

gone ( I assumed I

had

inherited in some way, my Mothers Parkinson's

Disease ). Also I stopped

getting seasonal colds and haven't had any sign of

one since I cut out

(almost ) all carbs [illegal carbs] from my diet.

Over the past two

years, I

have often wondered why carbs are such a problem for

me and Ralph - I

often

crave a HUGE cheese sandwich [bread], and only last

week it occurred to

me

that perhaps carbohydrates are acting as an immune

system suppressant, allowing the bad guys to get

more of a hold. What do you think?

Regards.

[Guest guest]

February 3, 2003

Hi Patti,

I do have a letter from .

Mimi

---------------------------------------------------------------

Dear Dr. Rimland:

I am writing to suggest the addition of someone at the next DAN!

Conference or Thinktank: Ms. Elaine Gottschall, nutritionist and

author of Breaking the Vicious Cycle: Intestinal Health Through

Diet.

Ms. Gottschall cured her young daughter of ulcerative colitis in the

1960s with this diet, and then went on to study food biochemistry

and

its effect on intestinal health, along the way earning a Master's

degree. (You may know who she is?she knows of you!).

The premise of the Specific Carbohydrate Diet is removal of all

sources of starch and complex sugars from the diet, because the

diseased intestines, inflamed from the effects of dysbiosis, are not

producing the enzymes necessary for digestion of starches and sugars

and so those undigested starch/sugar molecules serve as a continual

source of food for bacteria and fungi. Removing starches and sugars

results in a correction of dysbiosis, which then results in a

decrease

in intestinal inflammation and allows the villi to resume production

of digestive enzymes.

The Specific Carbohydrate Diet was designed for patients with other

intestinal diseases but has been " found " by some of us with autistic

children, and we are getting great results. I would direct you to an

informative website at www.geocities.com/recoverymaze. We moms have

also started a listserve and Elaine Gottschall frequently posts

there.

At the age of 82 she is still interested in helping sick children!

The difference between the Specific Carbohydrate Diet and the GFCF

Diet is that the GFCF Diet really aims to control peptides and

allergenic foods, while the Specific Carbohydrate Diet heals the gut

by addressing faulty digestion resulting from microbial overgrowths.

Moreover, while the GFCF diet does not restrict starches (so long as

they are gluten-free) or sugar, the SCDiet removes all complex

sugars

and starches and is quite specific and detailed on what types of

carbohydrates are allowed.

My son , 6, who is in the care of Dr. Green, has been on

this diet for six months. He was diagnosed with Autism Spectrum

Disorder at 3 years 9 months, and his initial score on the CARS was

30. Since he started the SCDiet last July he has lost all traces of

echolalia; he is attending kindergarten without an IEP and doing

fine;

he has friends; and he is learning to read (with phonics). His

digestion is greatly improved, he no longer has either diarrhea or

constipation, and he now falls asleep at 8:00 p.m. instead of 11:00

p.m. His dysbiosis is improving rapidly. In fact, his behavior and

attentiveness have improved to where they are better than some of

his

neurotypical peers.

My other son , 4, is neurotypical and has had diarrhea from the

age of 2. He, too, has chronic high levels of dysbiosis. Since

starting the SCDiet last summer his diarrhea and yeast rash have

disappeared.

Therefore I hope you will read Elaine Gottschall's book and consider

inviting her to either the next DAN! Conference or the next DAN!

thinktank. Her premise that certain foods can contribute to

intestinal

disease is completely consistent with recent autism research

findings

- I will list just two: CAN funded a study at UCLA that found

elevated

bacterial growth in the intestines of autistic children, while Drs.

Buie and Horvath are finding impaired digestive enzyme production in

autistic children. These findings can be predicted and corrected

with

the SCDiet. Those of us whose children are on this diet believe that

Elaine Gottschall knows how to completely heal the gut, and that her

diet holds great promise for the autistic community.

Very truly yours,

Tamaro

>

>

> Maybe Mimi has saved a post from ....

[Guest guest]

Oh Patti! This is just an awesome email, thank you! The mom's note

( Tammaro) explained my feelings to a 'T'. GFCF did work for

us, but it allowed the proliferation of nasty gut bugs. I think that's a

very important way to think of this. SCD should not be a diet for

parents to turn to because GFCF didn't work, it very well may, but SCD

will work on areas GFCF can't touch because of the sugar and starched in

it.

Looks like they have the beginning of some potential case studies for

SCD. It would be great if they could get one published.

Also, what I think really needs to happen, is we need a parent account

type of book written by a parent whose child has recovered from autism

and SCD was one of the interventions. I don't believe there is one, is

there? Along the lines of the books such as Unraveling the Mysteries of

Autism and PDD by Seroussi and Let Me Hear Your Voice by

Maurice.

Maybe Pam Ferro or Tammaro?

Becky

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

SCD 3 months

>

> Carol/Froggypeach... and others... since the topic of studies has come

up,

> I thought some of you might be interested to read, or re-read this

message

> that I had saved. Please note the two messages at the bottom...

e-mails

> from parents. One of them is Tamaro, from Seattle... whom

I've

> had the pleasure to meet and work with at the DAN! conference in

Portland,

> Oregon a few years ago (where I also had the pleasure of meeting and

> chatting with Binstock).

>

[Guest guest]

Thank you Patti for this post. This explains why at first the GF and then GF CF

and then other interventions (that still had starch) appeared to work for us at

first......and within time....no longer did...all experiments ended in disaster.

Now I can see why they did not...the bad gut bugs still where getting fed!

Antoinette and family scd/2/06 celiac/add,adhd autism and more