|
The
only non-dairy, non-wheat foods
my child will eat are french
fries and chicken nuggets. Are
these okay?
Chicken nuggets
are coated with wheat. Some
french fries are dusted with
wheat flour to keep them from
sticking together. It is a
very good idea to get used to
checking with your supplier or
the manufacturer. Keeping a
stack of blank, pre-stamped
postcards in the kitchen is a
handy way to check.
The biggest problem with
french fries eaten out of the
house is contamination of the
frying oil with gluten from
onion rings and other breaded
products. Making homemade
fries is a good option. If
your child refuses them at
first, it may be because of
what they're missing! Some
parents report that their kids
have an uncanny ability to
detect gluten in foods. Since
many of the children enjoy
salt, salting the fries might
make them more acceptable.
I
thought the "five food
groups" were so important!
They are, to an
individual without food
intolerances. But, just as a
person who eats a balanced
diet might not need to take
vitamins, a person with poor
nutrition can make up for a
lot with a good vitamin and
mineral supplement.
Should
I be giving my child a vitamin
supplement?
Absolutely.
Poly-vi-sol with Iron is
probably okay to start with,
or order a gluten-free
multivitamin & mineral
formula from your natural
foods store, The GFCF
Diet Support Group www.gfcfdiet.com
or from Kirkman
Labs (800-245-8282). Kal
Dinosaur Chewables and "I
Love Schiff" liquid and
chewables are tolerated by
many food-sensitive children,
and are available with or
without minerals. Because many
autistic children have been
reported to improve on a
regimen of vitamin B6 and
magnesium, you may want to
order a supplement rich in
these nutrients from a lab
such as Kirkman. For a 40
pound child, Dr. Bernard
Rimland of the Autism Research
Institute recommends 300 mgs.
of B6 and 100 mgs. of
magnesium per day. It is
likely that in people with a
leaky gut, absorption of B6
(which aids in nervous system
function) could be greatly
diminished.
What
are my child's nutritional
needs?
There are six
basic things a person needs
from food: water, protein (and
amino acids,) carbohydrates,
fats, vitamins, minerals
(including iron &
calcium.) In addition, food
contains certain phytochemical
substances that seem to help
with functions like disease
prevention. It is helpful to
consult a nutritionist about
the use of supplements such as
pycnogenol for any child on a
limited diet.
Children who have gone for one
year eating only chicken,
canola oil, potato, rice,
calcium-enriched beverages,
and a liquid multivitamin
supplement with minerals have
had excellent results on
nutritional blood tests. You'd
be surprised to learn just how
unnecessarily varied an
American diet is, compared
with the diets of other
cultures!
So
how do I know if my child will
respond to this diet?
The biggest
clue is when a child
self-limits his diet -
especially to milk and wheat.
This is no longer seen as a
"need for sameness"
but as a biological addiction.
Children who don't necessarily
"self-limit" but who
also respond are those who eat
an unusually large or small
amount of food. Although the
former may not recognize the
source of the opiates, he
knows that eating makes him
feel good. The latter may
realize that many foods make
him feel ill, and tries to
avoid eating whenever
possible. These "failure
to thrive" autistic
children are very hard to put
on this diet because of their
parents' fears, but will
usually respond when
acceptable substitutes to the
non-tolerated foods can be
provided.
Other symptoms of food
intolerance or vitamin
deficiency are dermatitis or
extremely dry skin, migraines,
bouts of screaming, red
cheeks, red ears, abnormal
bowel movements, abnormal
sleep patterns or seizures.
What's
all this I hear about yeast?
Candida and
other yeasts live in our bodies
in small amounts. It was
speculated that in individuals
with improperly-functioning
immune systems, they could
flourish in the gut and lead to
a host of problems, including
fatigue, sugar cravings,
headaches, and behavioral
problems.
Dr. William Shaw in Kansas has
found unusually high levels of
"fungal metabolites"
(yeast waste products) in the
urine of several groups of
abnormally functioning
individuals (including people
with autism.) His first paper
describing this phenomenon was
published in the Journal of
Clinical Chemistry in 1995 (Vol.
41, No. 8.) His urinary organic
acids test is performed by the
Great Plains Laboratory
(913-341-8949).
So
does yeast cause autism?
This finding
may be just another
consequence of the abnormally
functioning autistic immune
system. However, early
antibiotic use may actually be
the triggering factor for
children predisposed to
autism. It has been
hypothesized that the candida
might aggravate a condition of
gut permeability (the
"leaky gut"
syndrome), which might let the
gluten and casein proteins
into the bloodstream before
they are broken down, so it
may in part be responsible for
autistic behaviors. Many
parents of children with ADD
or ADHD as well as those with
autism report that treatment
for candida does improve their
children's behavior and
concentration.
How
do I treat for candida?
One approach is
to ask your pediatrician for a
course of Nystatin, which is a
non-systemic (not absorbed
into the bloodstream)
anti-fungal. Taken orally, it
works locally in the gut to
fight candida. This medication
is considered to be quite
safe, even when taken for
several months. For a 25-35
lb. child, ask the doctor for
a prescription for Nystatin
powder (125,000 units per cc)
in a stevia base, starting
with 1 cc 4x/day. Your local
pharmacy probably carries a
commercial preparation in a
sugar base - this feeds yeast!
Try a compounding pharmacy
such as Pathway
(800-869-9160).
"Probiotics" such as
acidophilus, the natural
bacteria found in yogurt, are
other candida-fighters, and
are available at the natural
foods store in powdered form
in the refrigerated section,
or from Kirkman Labs. Some
acidophilus preparations are
milk-based - be sure to get
one that is not! Bifidus works
in the large intestine and can
be of great benefit.
"FOS" is desirable
in these supplements, as it
feeds the probiotics.
That's
why you're supposed to eat
yogurt when you are on
antibiotics!
Exactly. As a
matter of fact, in the 1950's,
when oral antibiotics were
first prepared for general
use, scientists knew about
this candida problem and
coated the tablets with
Nystatin. After a few years,
the FDA decided that the two
drugs should be prescribed
separately (which they never
were) and made them stop.
My
friend's child tried Nystatin
and it made him vomit. If
nystatin is so safe, why did he
react to it?
The child may
have experienced a
"die-off reaction"
to the candida. As it dies,
candida releases toxins into
the bloodstream and can cause
nausea, vomiting, or diarrhea.
It is likely that candida was
indeed a problem for this
child. Your friend should
discuss a dosage change
(starting with a low dose and
working up to a "normal
dose") with the
prescribing doctor.
My
doctor has never heard of any of
this and she is extremely
skeptical. I'm embarrassed to
tell her I'm considering
this approach.
Skepticism is a
good thing in a medical doctor
or scientist. However, since
there is preliminary evidence
to support this safe,
non-invasive intervention, it
is up to you to educate her,
state your wishes, and ask for
her support. For a doctor, it
is better to wait until all of
the data is published in
peer-reviewed journals before
advocating a treatment. For a
parent, it is reasonable to
want to help one's child
without waiting for all of the
results of the
"double-blind
placebo" studies. Because
this approach does not include
any unusual supplements,
invasive drugs, or expensive
treatments, your pediatrician
should be supportive. Explain
that you would like to try
this for a few weeks, and
agree that you will be
objective about recording your
child's progress while on the
diet.
Where
can I find support?
www.gfcfdiet.com Largest
free resource on the Internet
for information about the GFCF
Diet. Community Bulletin
Board with over 150 support
groups throughout the United
States. Find support in your
city or start your own GFCF Diet
Support Group. Guidelines
and helpful information provided
on the Community Bulletin Board
section (see Directory of
website; GFCF Kids, our on-line
support group with over 10,000
members! Starter packet of
information, Discussion about
diet, vitamins, recipes and more
on our DVD, GFCF Cookbooks,
CD's, Vitamins, Yummi Snack Pak
over 10 pounds of tasty GFCF
snacks.
www.autismndi.com
ANDI was established by parent
researchers, Lisa Lewis and
Karyn Seroussi, to help families
around the world get started on,
and maintain an appropriate
diet. The ANDI mission is
simple: To help parents
understand, implement and
maintain dietary intervention
for their autistic children.
Look at the PASS list for
local contacts, or form a group
yourself.
Karyn Seroussi author:
Unraveling the Mystery of Autism
and Pervasive Developmental
Disorder: A Mother's Story of
Research and Recovery (Simon
& Schuster, February 2000,
Broadway Books, 2002).
Lisa Lewis's author:, Special
Diets for Special Kids I and II,
include loads of information and
recipes.
When
my child was taken just off
dairy he improved greatly, but
then he started eating a lot of
wheat, perhaps to make up the
opiates he was missing. Will I
see the same kind of noticeable
improvement when I remove
gluten?
Some children
appear to tolerate gluten.
Others are highly sensitive.
The degree of tolerance in a
specific child is not constant
either: It can depend on gut
permeability, enzyme function
level and a number of other
reasons that are poorly
understood.
The general answer is,
however, that most children
who benefit from a milk free
diet, will also need to remove
gluten.
Some parents say that their
child's response to milk
removal was quicker and more
obvious than when gluten was
removed. Paul Shattock has
observed that urine tests have
shown that casein peptides can
leave the system in about
three days, but it can take up
to eight months on a
casein-free, gluten-free diet
for all peptide levels to
drop.
Research has shown that gluten
(as well as casein) can give
rise to several different
types of opoid peptides, and
that these types have
different sized molecules. Dr.
Robert Cade has demonstrated
that the molecule size affects
the speed with which the
peptides disappear from the
body.
If gluten removal is followed
by a deterioration or
regression (a withdrawal-type
response), stay the course! It
almost certainly means that
your child will benefit. This
may seem like a lot of work
for an uncertain payoff, but
in the lifetime of your child
it may be the most important
step you take!
What
is casomorphin?
Casomorphin (or
caseomorphin) is a peptide
derived from casein, a milk
protein. Casein is one of the
major proteins in the milk of
all mammals including cows,
goats, and humans. When Casein
is digested properly, it
breaks down into large
peptides like casomorphin, and
should then be broken down
further into smaller amino
acids.
However, Dr. Reichelt in
Norway, Dr. Cade at the
University of Florida, and
others found that urine
samples from people with
autism, PDD, celiac disease,
and schizophrenia contained
high amounts of the
casomorphin peptide in the
urine. In its peptide form,
casein has opiate properties
similar to morphine, and may
plug into the same opiate
receptor sites in the brain.
Researchers have found that
these peptides may also be
elevated in other disorders
such as chronic fatigue,
fibromyalgia, and depression
based on anecdotal reports of
symptom remission after
exclusion of wheat and dairy.
What
is gliadorphin?
Gliadorphin
(also called alpha-gliadin or
gluteomorphin) is a substance
that resesmbles morphine.
Ordinarily, this is a
short-lived by-product from
the digestion of gluten
molecules (found in wheat,
barley, rye, oats, and several
other grains). Gliadorphin is
very similar to casomorphin.
Gliadorphin has been verified
by mass spectrometry
techniques to be present in
unusual quantities in urine
samples of children with
autism, and are believed by
many to be a central part of
the system of causes and
effects that cause autistic
development.
The most probable reasons for
the presence of these
molecules are:
* One or more errors in the
breakdown (digestion) process
caused by enzyme deficiency
and/or
* Abnormal permeability of the
gut wall (that would allow
these relatively large
molecules to enter the
bloodstream from the intestine
in abnormal quantities).
Is
it best to start with one or the
other or just go GF/CF from the
start?
Some people
like to get moving quickly and
remove both at once. While
this kind of commitment is
commendable, there are two
reasons why you might want to
begin by removing dairy alone.
One is that it may be far
easier to understand which
foods to remove, and allow for
parents to get started more
quickly. This gets parents in
the habit of reading labels,
and will get the child used to
the idea of eating substitutes
for some of his favorite
foods.
The other reason is that some
children, especially younger
ones, can go through a very
uncomfortable withdrawal
period as the opiates leave
the system. This is why some
kids' behavior gets worse at
first. Although gluten should
be removed within a week or
two after removing dairy
(waiting longer may cause the
child to become addicted to
gluten, and self-limit only to
bready foods), a gradual
withdrawal will be easier on
the child.
Often, picky children will not
try new foods until both
gluten and casein are
completely eliminated from
their diets, and are totally
unavailable to them.
Why
do I need to completely remove
both gluten and casein?
It doesn't take
much of these opiate peptides
to interfere with normal
functioning. Although you may
notice a change after just
removing dairy (a good place
to start), the proteins are so
similar that if one is a
problem, the other should be
removed as soon as possible.
Often, no improvement is noted
until a hidden source of
gluten or dairy is removed
from the diet.
Do
children with Pervasive
Developmental Disorder,
Asperger's Syndrome, Apraxia,
Dyspraxia and Sensory
Integration Dysfunction, and
Expressive/Receptive Language
Disorder respond to this diet?
These are all
considered by many to be
disorders on the autism
spectrum. If you took the same
autistic child to six
different doctors, he could be
diagnosed with each of the
above. For some reason, many
professionals are reluctant to
use the "Autism"
label, perhaps because they
want to "spare" the
family. We have heard from
many, many parents who have
told us that some of their
children with these diagnoses
responded dramatically to the
diet. Remember, this diet will
only improve the symptoms in
children whose behaviors are
being caused by the abnormal
breakdown of these proteins.
This is not the case with
every child, but a significant
number do respond.
Do
older children or adults respond
to this diet?
Yes. Obviously,
the younger the child the more
likely he is to "achieve
normal functioning."
However, many older children
and adults have made dramatic
and remarkable improvements,
not just in their level of
functioning, but in their
sleeping patterns, anxiety
levels, and comfort levels.
Other factors seem to include
current level of functioning,
condition of the gut, immune
function, and of course, the
subtype of the disorder. We
have heard from
high-functioning adults with
autism who describe going on
the diet as "a fog
lifting." Clearly, most
older children have not been
"cured," but many
have achieved functioning far
beyond their caregivers'
expectations.
Can
you recommend a pediatrician who
will listen to me and is
"open minded." My
pediatrician does not believe
diet changes can help. I am
willing to go anywhere and do
anything for my child.
Although there
are now several doctors who
are enthusiastically learning
about the biological
treatments for autism, they
are still few and far between.
You may need to find a local
doctor who is supportive, and
educate him or her yourself.
To see a list of DAN! (Defeat
Autism Now!) Doctors, or to
order the Autism Research
Institute's Treatment Guide,
The "DAN Protocol,"
visit www.autism.com/ari
There are also medical links
at www.GF/CFdiet.com
, www.goodnewsdr.org
, and www.autismndi.com/links
For an incomplete list of
physicians reported to be
knowledgeable about the
"DAN Protocol,"
visit www.autismndi.com/doctors.htm
.
My
doctor has never heard of any of
this and she is extremely
skeptical. I'm embarrassed to
tell her I'm considering this
approach. What do you think?
Skepticism is a
good thing in a medical doctor
or scientist. However, since
there is preliminary evidence
to support this safe,
non-invasive intervention, it
is up to you to educate her,
state your wishes, and ask for
her support. For a doctor, it
is better to wait until all of
the data is published in
peer-reviewed journals before
advocating a treatment.
For a parent, it is reasonable
to want to help one's child
without waiting for all of the
results of the
"double-blind
placebo" studies. Because
this approach does not include
any unusual supplements,
invasive drugs, or expensive
treatments, your pediatrician
should be supportive. Explain
that you would like to try
this for a few weeks, and
agree that you will be
objective about recording your
child's progress while on the
diet.
If you feel that you need to
support your case legally with
the scientific and medical
documentation that is
currently available, please
see the medical links at www.GF/CFdiet.com
, at www.autismndi.com
, and at www.gnd.org
But
my child's immune system seems
to be working unusually well -
he is rarely sick.
What we're
describing is not an immune
deficiency, but rather an
immune dysfunction. Many
(although not all) seem to
share a history of ear
infections and spitting up as
babies (possibly
milk-related), or of chronic
diarrhea, constipation, or
loose stools (possibly
wheat-related.) Other parents
note that their autistic
children seem to be the
healthiest members of the
family. In this case, it has
been hypothesized that the
immune system is too
aggressive and ends up turning
on the nervous system. This
may explain the presence of
anti-myelin antibodies in some
children, and may also explain
why some have immune issues
like multiple allergies but do
not respond well to dietary
intervention.
What
causes this problem? Autism
seems to be so much more common
than it used to be?
Researchers are
not sure, but it seems likely
at this time that most cases
are caused by a genetic
predisposition or by
environmental toxicity,
combined with some kind of
triggering event that stresses
the immune system, such as a
vaccination or virus. Milk
allergy may be a predisposing
factor, or perhaps another
immune instability. In several
cases, prolonged use of
antibiotics, celiac disease,
or chronic viral illness seems
to have contributed to the
onset of the disorder.
There was some debate as to
whether we are seeing an
increase in incidence or just
better diagnosis, but studies
by the California Department
of Developmental Services
indicate that there has been,
in fact, a significant
increase in the number of
children with this disorder in
the past ten years.
One reason we can determine
this is by looking at the
number of school-age children
referred for special education
for various disabilities. If
autistic children had been
classified as something else
(such as mentally retarded),
then one would expect the
number of children entering
the system with the MR
diagnosis to drop, as the
autism numbers go up. However,
this is not the case, with an
increase in autism of up to
600% in some school districts,
and the total number of
special-ed cases increasing
respectively.
I
am confused about allergy vs.
intolerance. I understand that
our children may be sensitive to
corn, soy and other foods as
well as gluten and casein. Does
this mean that they will
eventually start turning these
foods into the morphine-like
compounds too? If this were the
case, would they show up as an
allergy on a RAST test? Or were
our children were always
allergic to these foods (a
regular allergy that may cause
behavioral changes in our
children), and we just didn't
know because the gluten and
casein were hiding the allergy.
To a
traditional physician or
allergist, "allergy"
is used to describe a reaction
of the IgE part of the immune
system, resulting in hives,
swelling, or breathing
problems. However, the words
"allergy" and
"intolerance" are
often used to describe any
inappropriate reaction to
foods or substances that
should normally be harmless to
the body.
There are at least three
different ways that a child
with autism may have a problem
with a food like gluten or
milk, and it's important to
understand the distinction:
1. An IgE ALLERGY that results
in skin problems, hives,
swelling, breathing problems,
etc. This can be tested using
a skin test or blood test.
2. An INTOLERANCE (usually
mediated by the IgG or IgA
part of the immune system, or
by an enzyme insufficiency
such as lactose intolerance)
that can result in more varied
or vague symptoms like
discomfort, stomach problems,
sleep problems, joint pain,
ear infections, or
hyperactivity and behavior
problems. Sensitivity to these
substances can be tested with
an ELISA blood test.
3. PEPTIDUREA (peptides in the
urine) that is caused by the
inability of the body to
properly break down certain
proteins. It is hypothesized
that certain peptides, notably
from milk and wheat proteins,
are plugging into the opiate
receptor sites of the brain
and disrupting brain and
nervous system function. Urine
testing for this is still
experimental, and many parents
believe that the best way to
find out if this is what is
causing a child's autism is a
strict trial period on the GF/CF
diet.
In the GF/CF diet, gluten and
milk are avoided because they
are strongly suspected of
having such a direct
pharmacological effect. When
these proteins are only partly
broken down, some of the
resulting fragments can be
strikingly similar to
morphine, and act in more or
less the same manner. (This
type of reaction can co-exist
along with a classic type of
allergy towards the same
foods).
Recent research indicates that
protein from both corn and soy
(as well as protein from blood
and spinach) could also
contain some molecule
sequences that could - if the
patient had an enzyme
deficiency - be broken down
into something closely
resembling opoid peptides.
Products made from soy or corn
will also often contain
metabolic end products made by
microscopic organisms like
bacteria, molds or fungus.
Some of these are suspected of
being harmful to a small
number of people who are
genetically disposed to
autism. The amount of danger
will depend on individual
conditions AND on the quality
of the corn or soybeans used
in the production process. Soy
OIL (lecithin) may be worse
than most other soy products,
since this product will look
and taste okay, even when made
from moldy raw material, and
since the "bottom
grade" of the harvest
tends to be used for it.
Some people also think that
one of the natural pigments in
corn (lutein) might cause
problems for reasons that are
not properly understood (see:
"Sara's Diet"). This
must be regarded as highly
speculative.
I
heard that dairy peptides (from
casein) leave the body in about
2-4 days and that gluten takes
much longer. How long does it
take to eliminate gluten from
the system, or at least bring it
down to an acceptable level? Is
it possible that gluten might
never leave the body completely?
We don't know
the answer to this. In a study
by Paul Shattock, researchers
found a 22% reduction in 5
months in children (average
age 9). Peptides may leave the
body more rapidly in little
children because they have
accumulated less - they tend
to have worse withdrawal
symptoms (more vicious but
shorter duration).
In Celiac Disease there were
still antibody/gliadin
complexes found in the body
some 7 years after going
gluten free, so it is possible
that some of the peptides may
not leave the body completely.
What
is Urinary Peptide Testing?
By collecting
urine samples, storing them
frozen, and examining them
using mass spectrometry, HPLC,
or RA methods, certain opiates
such as casomorphin can be
detected in levels higher than
those found in normals. Such
results would indicate the
necessity of implementing a GF/CF
diet. However, there is still
some debate as to the accuracy
and consistency of these test
results.
From Paul Shattock:
"Certain biologically
active peptides derived mainly
from gluten and/or casein in
the diet are not broken down
correctly, and through
problems with the permeability
of the gut, are present in the
blood in much greater
quantities than would normally
be expected. The presence of
these compounds in the blood
would mean that they would
tend to be collected in the
kidneys and dumped in the
urine; hence, the peptide
content of urine would be to
some extent, reflective of the
content of the blood."
What
else contains gluten?
Wheat, oats,
rye, barley, kamut, spelt,
semolina, malt, food starch,
grain alcohol, and most
packaged foods - even those
that do not label as such.
There is a lot of information
on gluten intolerance because
of a related disorder called
Celiac Disease.
Aren't
probiotics the "healthy
flora" I've heard about?
Yes, they
compete with candida for the
sugars you eat. It's the
"good bacteria." You
may be aware that acidophilus
is eradicated from your gut
when you take antibiotics.
How
do I interpret the test results?
Each lab is
different, with different
testing methods and reference
ranges. If you do not
understand the test results,
call the lab directly.
My
child does not crave certain
foods - could he respond to the
diet?
Yes,
absolutely. Although food
cravings are a "dead
giveaway," those who have
them are not the only kids who
respond to the diet. Other big
clues are GI problems like
diarrhea or constipation, good
and bad days, dilated pupils,
and sleep disturbances.
However, if your child does
not meet these criteria, he
still may have a surprising
response.
Sometimes we feel that parents
are hoping we'll tell them
that their child doesn't need
to be on this diet. Isn't that
sad? This would mean that
there is nothing they can do
for the child besides therapy.
However, we estimate that
about 70% of autistic children
do respond to the diet. These
are good enough odds to do the
work involved.
If
my child responds to the removal
of dairy, does that mean I have
to remove gluten? Is it possible
that he can have a problem with
one, and not the other?
The structure
of the peptides of gluten and
casein (and possibly corn or
soy) are very similar in size
and weight as well as ability
to cause a reaction. If one
needs to be removed, the other
should go as well. Even though
|
