BBB
AUTISM/AUTISM SOCIETY ONTARIO
(YORK REGION CHAPTER)
PRESENT
THE E-NEWS
http://www.bbbautism.com/about_bbb.htm
VOLUME
4; ISSUE
1
FEBRUARY 14, 2002
DE-MYSTIFYING THE GFCF DIET
Autism Interventions
– Debate Rages On
On message
boards and news groups, debates rage over which is best, which one works, who
has the ‘magic pill’ this month? Debate
is terrific, it can help you see someone else’s point of view and lead you
to try something that you may not have thought of before. Thoughtful debate
can lead to empathy and tolerance a couple of really great qualities to have.
*****
The GFCF
diet is a very popular intervention for autism. Proponents believe that many cases of autism result from an
immune-system dysfunction that affects the body's ability to break down
certain proteins and combat yeasts and bacteria. Many parents are convinced of
the validity of dietary intervention for autistic individuals.
Anecdotal evidence is, indeed, encouraging.
The
purpose of this issue of the E-News is to present this topic in such a way as
to de-mystify it. We have some
terrific contributions from guests about their personal experiences, which
contain information to help you get a clearer picture.
This
issue is not about debate. We are not presenting pros and cons, but we are
including an article from a parent who discontinued the diet and why, as well
as the reasons why you might want to start. Our featured contributor this
month has generously allowed us to peek into his life and the life of his
child as they live GFCF. He has
provided us with some great strategies and access to his personal journal,
which details the “Changes in Attitudes and Changes in Latitudes” they
experienced.
We are
also thrilled to include contributions from authors Karyn Seroussi
(“Unraveling the Mysteries of Autism and PDD”) and Lisa Lewis (“Special
Diets for Special Kids). These
women have done much to help further research, while raising their own
children with ASD, and they are an inspiration!
In talking
to parents, who are our best source of information on this topic, we find that
most of the children with the farthest measurable gains seem to be those
who’ve enjoyed a nice combination of therapies, ones that have been
enjoyable.
When I look
at all the interventions out there, particularly the ones that parents swear
by, I notice that they seem to have a common element. All have a great deal of parent involvement.
Maybe that’s the key. Maybe
taking a viable idea and adding your loving touch to it makes it that much
more successful… J
I hope
you enjoy this issue and will join me in thanking the wonderful families
who’ve shared their stories with us!
Bee Cool,
Liz
http://www.bbbautism.com/about_bbb.htm
liz@deaknet.com
Are you wondering if your
child might benefit from the GF/CF Diet? Take a few minutes to answer these
questions! http://www.bbbautism.com/candidate_for_gfcf.htm
BEE News Bits
Interested
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everyone! We love to receive
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Some
potential future issues are:
Send ideas
by emailing me at liz@deaknet.com
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BBB Autism
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THE E-NEWS
INTERACTIVE READER POLLS
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ARE
YOU ON THE IBI WAITLIST IN YORK REGION???
Plan to attend the
PARENT INFORMATION NIGHT
Central East Preschool Autism Information Night for York Region
The evening will focus on the
status of the Program and to overview IBI.
It is an opportunity for parents awaiting services to ask questions and
to dialogue with our Psychologist and our service providers. If you are interested in attending please contact the
secretary at (905) 773-2362.
Date:
MONDAY FEBRUARY 25, 2002
Place:
Richmond Hill Public Library CENTRAL LIBRARY Meeting Room A & B1
Atkinson Street, Richmond Hill, ON 905) 770-0310 (south west corner of Major
Mackenzie & Yonge St.)
Time:
7:00 - 9:00 pm
Please note: Our
children our precious to us. We always substitute their real names for an
initial or pseudonym (unless
otherwise requested). Additionally,
we never include last names of contributors (or any personal information)
without permission.
BBB Autism and ASO York
do not endorse any particular interventions, but we DO endorse your right to
know about them! We strongly urge
you to do your homework before starting any
intervention. Here are some
cautions:
v
Any
mention of ‘cure’, particularly if a large sum of money is mentioned in the next breath.
v
Anything
that might harm your child – be smart.
v
Anything
that states it works for all
individuals with ASD.
v
Anything
states it is the ONLY intervention you should try.
The room
is full of six year olds hyped up as only a birthday party can get them.
Balloons, streamers, party plates and bouncing balls decorate the hall.
Most of the children are shoving pizza in their faces, smearing sauce on
their cheeks, making their smiles into clown mouths and washing it all down with
soda.
One boy
at the table is eating from a lunchbox. He
politely declines the offer of the pizza and chicken tenders.
He pulls out an expensive waffle with tomato sauce and something orange
on top of it, looks kind of like cheese. He
eats one of the heartily and gets distracted by his friends.
Several
minutes later a well-meaning parent clears the table of the food.
Unknowingly she has just thrown out an expensive meal for that boy, and
the only thing he can eat in the entire room.
That boy is mine.
My son
can't eat what others can.
He can't
anything with wheat, oats, barley, rye or milk.
He is on the Gluten Free Casein Free (GFCF) Diet.
I am
always surprised at people’s reaction to my son’s special GFCF diet.
“Isn’t that a lot of trouble?” “How do you do it?” “What can
he eat?”
“How
can I not,” I reply. If your
child is sick, you give them medicine. This
is the medicine he needs. I guess
we have been doing this for two years now and it seems all routine, and really
not that much extra work.
When we
were first told about the diet, we freaked out a little, okay, a lot.
It seemed so dramatic. After
the detoxification stage, the majority of the extra work is done when we do our
food shopping. We have a
separate area in our pantry where we store only GFCF foods.
He knows what snacks he can or can't have.
It really isn't an issue now.
The other
thing to remember is that when you are cooking for a GFCF diet that you prepare
everything in separate pans. Cook
the GFCF pasta while the pasta for the rest of the family is cooking.
DO NOT stir them with the same spoon.
This will cause cross contamination.
The
attitude to take is to tailor several of the foods you will be putting on the
table to be GFCF diet. In our home,
we try to all sit down to similar meals at the same time.
Just what makes up the meals is different. This way, all you are doing is adding two or three small
side dishes to your preparation.
It is
somewhere between 5:30 and 6:30 am when Jonathan wakes up. The house is dark
and quiet. I think he likes the stillness. We have several GFCF cereals on a
shelf in the pantry at ready access for Jonathan. Fruity and Cocoa Pebbles, Corn Pops and several
organic cereals made from corn and rice. In
the refrigerator, we usually keep two quarts of vanilla soymilk, chilled and
ready for use. WestSoy and Silk are
two of his favorites. He usually
will help himself to juice while he watches TV or plays Nintendo.
Sometimes
Jonathan will ask for several of his pancakes for breakfast. We will make a quadruple batch of his pancakes made from
Arrowhead Mills All-Purpose Baking Mix ahead of time.
We place the pancakes in freezer bags and they are marked GFCF pancakes.
This way he can even enjoy them as a snack in the afternoon, for dinner,
or for breakfast without too many hassles.
As a
rule, Jonathan carries his lunch every day to school. This is a great help and keeps him from being tempted by
“bad” foods. His lunch will
contain either a juice box or a soy milk box, a peanut and butter
(Fleischmann’s margarine) sandwich made on rice bread or a Van’s Wheat free
waffle, fruit cup or apple sauce container, and a sweet of some type, GFCF
cookies or a non-dairy pudding. We
also provide him shelf stable snacks to have in his class at school for special
and unexpected occasions.
When he
gets home from school he usually has a snack, a bowl of cereal, a pancake or two
or maybe some chips. Dinners
are more fun. Tonight, we are
having Fettuccini Alfredo with chicken and broccoli and garlic bread; nothing
Jonathan could or would eat.
For his
meal we will start by preparing the chicken.
The chicken for Jonathan is sautéed in a little Fleischmann’s
margarine after being rolled in white rice flour or even your basic cornstarch.
The chicken is cut in to medium to small nuggets and seasoned with salt,
pepper and poultry seasoning. It
only takes a few minutes, and his chicken is done and set aside.
The rest of our chicken goes into a bigger pan and is seasoned with some
Jane’s Crazy Salt and garlic or garlic salt.
Next,
come the pastas and broccoli. All
three are put on the boil at once on three different burners. Tonight, we are using corn pasta for Jonathan.
We will make sure to add extra water, so that the cornstarch will not
make the water too thick. As we are
waiting for the water to boil, we will take some Fleischmann’s margarine in a
small bowl and a little garlic salt into the microwave to melt along with a bowl
containing some butter and garlic salt. On
a cookie sheet we place several slices of regular bread along with two slices of
white rice bread. Each is coated with its garlic sauce and put in the oven to
bake.
Adding
the pastas and broccoli to their pans as the water boils; it is time to start
heating the Alfredo and spaghetti sauces. The
Spaghetti sauce is one without wheat flour or modified food starches used as an
emulsifier. The pastas are strained
in separate colanders placed in bowls and put on the tables. We have to make
sure we wash the colander out first very well.
We have to make sure there are no gluten proteins on the colander. Then
we strain the broccoli. When the Alfredo sauce is ready, we add the chicken and
broccoli.
Tossing
some cheese on our bread and soy cheese on his bread, the garlic toast is
finished, as well as the rest of the meal.
The key
to these extra steps is having the meal planned out and all of the components
available. Do not be afraid to
experiment. Learn how to cook the
GFCF foods. Know what is GFCF and
what isn't. And then experiment.
Live and enjoy!
(Read
Ronald’s Journal by clicking here: http://www.bbbautism.com/gfcf_ronalds_journal.htm)
What is
gluten?
Gluten is the glue stick protein that you find in wheat, rye, barley,
oats and malt. It is what makes
bread dough elastic and rise to be light and fluffy. It is ideal for pastas. Any flour or starch extract from
any of these sources contains gluten. Gluten is everywhere it seems.
It is in a lot of the foods we eat and do not even think about.
Many times, wheat flour is added to our gravies, soups, and other liquids
to thicken them up as an emulsifier
Casein is
an insoluble protein found in cow's milk and all milk products: milk, ice cream,
butter and cheese.
Vitamin A
is found in two different forms, solid and liquid.
Solid Vitamin A is different in molecular structure that liquid.
Your multi-vitamin and your cereal contain solid Vitamin A.
Liquid vitamin A is found in fish oils, like Cod Liver Oil.
I can feel you cringe reading that.
I did, too.
Being
gluten free, casein free and a good source of Vitamin A are the most important
things you can do for your child with Pervasive Developmental Disorder.
At first it seems like an impossible task.
When you read food labels for everything in the grocery store you will
find wheat flour, milk products, sodium caseinate, emulsifiers, etc on the
labels. All of these food products
must be removed from the home.
We started off making bread. We
also tried making bread from the blending of rice flours, starches and Xanthan
gum. I found the Oriental Grocery
Store in town and they carry white rice flour, sweet rice flour, potato and
tapioca starch. These were 99¢
a pound to a $1.50 for the sweet rice flour.
Xanthan gum runs about $12 for half a pound.
Several of the loaves made from these combinations were edible but were
far from delicious.
Next, we tried some of the store-bought mixes. We ordered several bread
mixes from Miss. Robens, The Gluten-Free Pantry, and picked several up from the
local health food store. These
mixes varied in price, anywhere from $4.50 to $6.00. Initially, we started baking the bread in the oven.
The breads where very dense and crumbly.
It was difficult to cut these in to sandwich slices.
The breads molded quickly, with about a four-day shelf life.
For Christmas, my in-laws bought us a bread maker. This made making the bread easier, but it still had the
problems with crumbling, molding, and slicing. It also did not rise as well as the old fashioned way you
make bread. Removing the loaf from the cooking tube was also difficult.
Either way, we were throwing out one loaf out of four.
I’ll never forget my mother saying, “Oh making bread is easy.” She
went in and tried several of the tricks she learned from her mother to make the
bread light and fluffy. When it
collapsed in on itself like a black hole, we threw it out and smiled at the loss
of a $5 mix.
We finally found several frozen breads available at our local grocery
store. The store has a
special foods section catering to organic and special dietary food requirements.
Food For Life has several wheat and gluten free rice breads.
This bread is kept frozen and has a shelf life of over 2 weeks.
I can tell you the exact length because it is eaten up well before it
molds. Each loaf contains
about 15 slices. The different
flavors are White Rice ($3.59 a loaf), Rice Pecan Bread ($3.99 a loaf) and Rice
Almond ($4.39 a loaf).
My son devours eats this. We
make cinnamon toast, sandwiches and use it for pizza.
Another commercially available bread product is the Van’s Wheat Free
Waffles. These waffles come
in regular and apple-cinnamon. We
will make peanut butter sandwiches from the waffle.
If we don’t have any bread thawed, we even use them for pizza.
There is a recipe for an orange cake that was very good. Each box has a recipe book included.
This includes recipes for biscuits, cakes, waffles and pancakes.
We usually make a quadruple batch of pancakes and freeze them.
This allows us to give my son a pancake as a snack at anytime.
Arrowhead Mills, Inc., P.O. Box 2059, Hereford,
Texas 79045
Food For Life Baking Co., Inc., P.O. Box 1434,
Corona, CA 91718
The Gluten-Free Pantry, P.O. Box 840,
Lastonbury, CT 06033
Van’s International Foods, Torrance, CA,
90501
There are
several different alternatives in pastas. The
two major choices are made from rice or corn. Both are different in texture to wheat flour pastas,
but both are tolerable. The local
specialty food store only had one brand of pastas on the shelf when I went to
look. The DeBoles brand provides
both rice and corn pastas in Angle Hair, Spaghetti and Fettuccini.
The cost is the same, $1.99
(U.S.) for an eight-ounce box. There
is also elbow macaroni made from corn flour available, $2.39 (U.S.) for a
12-ounce box.
It has
been my experience that when cooking corn & rice pasta add extra water.
The water will get thick and soupy from the cornstarch and rice starch.
Remember cornstarch is used to thicken the juices from meats to make
gravy. It only makes sense that it
would thicken the boiling water cooking the pasta the same way.
DeBoles
Nutritional Foods Corporate Headquarters, The Hain Celestial Group, Uniondale,
NY 11553
The
Journal Of Ronald E.
The
purpose of this journal is to provide a written documentation to my son’s
progress and to record my thoughts and feelings.
My
son has been diagnosed with PDD. Over
the last two years, labels to
describe his difficulties have ranged from autistic to Asperger’s Syndrome.
We recently took Jonathan to see Dr. Mary Megson.
After a physical exam and looking at our family histories, Dr. Megson
believes his problems result from improperly digested Vitamin A.
Vitamin
A exists in two forms, a solid, which is in our multi-vitamins and our cereals
and a liquid form, as found in Cod Liver Oil (CLO).
Both our children where recommended 2 teaspoons of CLO a day.
One
of the things this journal is aimed at is to chronicle my observations.
The other objective is to give me a chance to express my feelings.
Let me qualify anything I write here by saying that I love my wife
immensely; however, she does drive me nuts!
Please note: You can
access this entire inspirational journal by visiting: http://www.bbbautism.com/gfcf_ronalds_journal.htm
A
Different Point of View:
IMPROVEMENTS,
BUT NO MIRACLE CURE FOR US!
When we first heard that our
15-month-old son had some 'soft' signs of autism, I immediately went out and
read anything I could find on autism. The first book I found was the one by
Karyn Seroussi in which she details how her son 'recovered' from autism using a
special casein-free gluten-free diet. I got very excited, bought a bunch of CFGF
recipe books and went headlong into the diet even though my husband, being a
physician, questioned the science behind the diet. We figured it couldn't hurt
him so why not try? At the same time, we started speech therapy, occupational
therapy and ABA/IBI, and perhaps more importantly we changed the way we
interacted with our son.
Within a week of removing
casein, our son, who had stopped babbling at 12 months, started making sounds
again. Next we removed gluten. Over the next few months, he began to sleep
better, began to eat a greater variety of foods, began to walk and seemed much
calmer over all. His bowel movements became more regular and softer and less
painful to pass. However, even after 10 months on the diet he is still on the
autism spectrum. No miracle cure for us.
The diet is very strict, even
to the point of recommending a separate toaster for the CFGF bread. Luckily, I
found a fair number of health food stores, including my local grocery store that
carried CFGF foods. I became obsessive about my son's food and carried it with
me everywhere including to Chicago for a family wedding. The diet is expensive
but not impossible. There are many
good recipes and I'm sure that my son is healthier because he was eating organic
and homemade food with no preservatives.
We ran special 'allergy' tests
that came back negative for casein and gluten which would seem contradictory but
isn't if you understand the theory behind the diet. However the tests came back
positive for many of the things he was allowed (corn, soy, pea etc). I felt
overwhelmed because it seemed impossible to remove so much from his diet. We
removed some of the offending foods for several weeks and saw no change in his
behaviour. This made us question whether or not he needed to stay on the CFGF
diet.
A month ago we began to
challenge our son first with gluten and then eventually with casein. In fact one
day, he accidentally drank an entire bottle of milk (not his). We kept it a
secret from his therapists and even they saw no change in his behaviour. Now he
is about 50% back on gluten and has some casein every day. He seems OK.
I don't understand exactly
what has happened with my son but some theories are that he may have begun
improving because of all the other therapies that began at about the same time
as the diet. Also we had started adapting our interactions with him so that may
have also contributed to his improvements.
My pet theory is that by removing the foods he had self-limited himself
to (cheerios, yogurt, milk, wheat raisin bread) he had no choice but to eat what
we offered him with the CFGF diet. He probably felt better and calmer because he
was eating better. Too much milk can cause ear infections, hard stools etc so
again; he may have begun to feel better because milk was removed.
I don't regret having put my
son on the CFGF diet. It gave me hope when all seemed hopeless. My advice to any
parent is to be careful to attributing improvements to any one thing. Do
everything in your power that might help but won't harm your child.
I'm sure that KS's son and
others like him improved to the point that they were no longer autistic but I
don't think the CFGF diet helps every child to the same extent. If you decide to
go ahead with the diet, know what you are getting into. Document every change
you see as well as what else has changed in your child's life besides the diet.
Give the diet a trial period of about 9 to 12 months but if you're going to do
it, no cheating. It's not something that should be done half-heartedly or
randomly. Remember to read every label on every food. Best of luck.
We continue to see amazing
changes in our son as he grows. We know that he loves us and is happy. It's
enough for now but we continue to hope for much much more.
by Karyn Seroussi, Co-Founder, Autism Network for Dietary
Intervention,
Author, “Unraveling
the Mystery of Autism and PDD: A Mother's Story of Research and Recovery”
Click Here: http://www.autismndi.com/faq.htm
WHY
DIETARY INTERVENTION FOR AUTISM?
From the Living Sensibly Foundation
(Reprinted with permission)
Written by Lisa Lewis, Ph.D.
Why would
anyone think that a gluten and casein free (GF/CF) diet could help a child who
has a developmental disorder? The idea of dietary intervention has its origins
in 1980, when scientist Jaak Panksepp observed that autistic children had many
traits in common with people addicted to opioid drugs. Addicts are often
"in their own world," and frequently exhibit stereotypic behaviors
(e.g. rocking). Generally, opiate addicts are insensitive to pain and have
serious gastrointestinal problems. Panksepp proposed that autistic children
might have elevated levels of naturally occurring opioids in their central
nervous systems.
These observations led to
research in Norway, Great Britain and the United States. In all locations,
abnormal peptides were found in the urine of autistic children. These findings
ultimately resulted in the postulation of what is now called the "opioid
excess theory" of autism*. Briefly, this hypothesis suggests that autism
and its associated symptoms result from the incomplete breakdown of peptides
derived from foods that contain gluten and casein, and to excessive absorption
of these peptides (due to a "leaky gut"). According to the theory's
proponents, the presence of these peptides causes disruption to biochemical and
neuroregulatory processes in the brain.
Recent
research at Johnson & Johnson has confirmed the presence of these substances
in the urine of autistic subjects. Perhaps more significant, another urinary
compound was found and identified in autistic subjects.
Known as dermorphin, this highly hallucinogenic substance was not found in the
urine of any non-autistic person.
How on earth did this get into
the urine of autistic children? One theory is that it is a fungal metabolite
in other words, there is a fungal infection and dermorphin is the byproduct of
the metabolism of that organism. This may be why some children with autism
respond well to a low-sugar, anti-yeast diet and treatment with anti-fungal
medications.
In the future the enzyme or
enzymes that are inactive or insufficiently active to metabolize these common
dietary proteins may be identified. For now, however, all these researchers have
one thing in common all recommend that gluten and casein be removed from the
diet of autistic spectrum children. Until researchers discover why these
proteins are not broken down, removal of the proteins from the diet remains the
only way to prevent further damage. Some children, who were diagnosed with
autism and started on the diet before the age of two, have lost their labels and
no longer need their services! For children who started the diet at a later age,
this level of recovery may be out of reach. Even so, thousands of parents around
the world will attest to the dramatic improvement that can be achieved by
implementing a GF/CF dietary program.
*For more information see:
"A Gluten-Free Diet as an Intervention for Autism and Associated Spectrum
Disorders: Preliminary Findings," by Whiteley et. al. Autism: Vol. 3 (1),
March 1999.
The Living Sensibly Foundation
needs the help of parents of children with autism (and anyone else willing to
help) to distribute the publication directly to other parents, to schools with
special programs for children with autism to give to other parents, to doctors,
etc. The publications can be
obtained at no cost from http://www.vancesfoods.com/at
their online store or by calling
1-800-497-4834.
THE
ANDI NEWS, Volume III, Issue 1
When Can My
Child Go Off the Diet? by Karyn Seroussi
(Reprinted with permission from the author)
We
were recently told this story by a mother in Massachusetts:
Four
years ago I helped to start a support group in my area for parents doing the
diet, and I was adamant that this was a lifetime treatment plan, with no excuses
for “cheating” or giving up as long as the child was improving and doing
well. My son responded extremely well to the removal of gluten and casein at age
five, and by age nine, he had lost his diagnosis of autism and had done
wonderfully in a regular third-grade classroom without supports.
In
years past, any trace of contamination led to diarrhea, screaming, return of
autistic behaviors, and multiple other problems, so we were very careful not to
re-introduce those foods. However, last June my son ate some regular pizza and,
presto, nothing happened. Had his gut healed? Had his immune system kicked in
and repaired the root of the problem?
At
that point, it seemed unfair to keep a healthy child on such a restricted diet,
so we let him have ice cream, bread, cereal, the works. For at least a month, we
congratulated ourselves on “fixing” the problem. But then things began to fall apart. My son
started complaining that he was seeing things, and then that he was hearing
voices in his head. By August, he had been hospitalized twice for violence and
delusional behavior, and he was diagnosed with schizophrenia.
As
you can imagine, we put him back on the diet, and he is slowly returning to
normal. But he was unable to attend fourth grade with his friends, and he has
been set back by many months in his development and education.
Unfortunately,
this seems to be a common account. Lisa and I have heard similar stories several
times, and it is always heartbreaking. One theory of this phenomenon is that the
gut does indeed “heal,” keeping undigested gluten and dairy proteins out of the
bloodstream, should they be re-introduced. However, if the child still has high
IgG titers to gluten, it creates an autoimmune reaction similar to that in
Celiac Disease, and before long it damages the lining of the gut wall. This is
only a theory—it
may be that something else is damaging the gut wall, and that, given enough
time, a return to gluten and casein filled food will also mean a return to the
leaky gut syndrome and the problems associated with it.
We
would all like to let our kids eat regular food, I know. But let’s
face it—the
diet really isn’t
that hard, once you get used to it. Although we have some ideas about it, we
just don’t
fully understand the mechanisms by which these foods are doing their damage, or
how to fix it, and until we do, it is better just to hang in there.
One
reason some parents take their children off the diet is because, after a trial
period, they are not certain it has had any effect. Here are my thoughts:
1.
For the kids who self-limited their diets or had bowel problems before the diet,
giving up might still be a bad idea. Although this subgroup is not the only one
to benefit from the diet, it describes the children who almost always respond
well.
2.
Are you sure your child is actually on the diet? Is there casein in the soy
cheese or tuna fish? Is there malt in the breakfast cereal? What’s
really in and on the chewing gum? This is a good time to list every food that
goes into your child’s
mouth, and do a bit of detective work. Just a trace can make a world of
difference in your results.
3.
Have you tried removing soy and/or corn as well? For some kids, taking away
these and other allergens seems to be necessary to achieve results. Allergy
testing, both by skin (IgE testing) and by blood (IgG testing) may yield some
answers.
If
you have considered the above and really want to stop doing the diet, after a
fair amount of time (at least three months, preferably a year) this is certainly
reasonable. We suggest proceeding carefully. First thing in the morning, give
your child a nice big serving of Lactaid milk or another lactose-free dairy food
on an empty stomach, then put him back to the diet for three or four days
and watch carefully for any changes. If there are none, proceed with caution;
recording any changes in your child’s
sleep patterns, behavior, and bowel movements.
For
those of you whose children’s autism is not coming from
these foods, do not give up your search for answers. Test immune function, look
at issues like yeast and bacteria in the gut, and perhaps even look into
homeopathy, which seems to be helping many autistic children for reasons that
are not fully understood. Remember, autistic behaviors are not a disease; they
are a symptom, and there is no such thing as a symptom without a cause.
GFCF
– Thoughts from Parents
Khris
We did some preliminary testing with a DAN doctor, and even though no
dairy products showed up in his blood allergy profile and gluten had only a
slight reaction, we decided to go GF/CF as well as eliminating all the other
foods that he reacted to. After 3 months of being off all offending foods we
slowly rotated the least offenders back in (except for gluten). After 3 more
months we rotated the rest of the offending food back in (except gluten and
casein) with good success. When we tried gluten and casein independently, there
was no noticeable reaction, so we slowly increased his intake and found that as
long as we rotated all foods there was no problem. We continue to rotate his
diet just by mentally tracking what he's eating and offering a variety.
Bernie
We tried the diet for about 6 months. I didn't see a significant change
in A's behavior to continue.
Jean
Some people are also on this diet for digestive problems. We have not
seen any behavioral changes in my son but digestive problems have decreased. We
think he has an intolerance to dairy and have him almost 100% off this and have
cut out a majority of wheat products along with sugar products. Just another
thought about why people use this diet.
Kim
I don't know a whole lot about this area yet. But, I'm thinking that if
my son has any sort of digestive/dietary problem, there would be some physical
symptoms. He doesn't appear to have any health problems at all, never has. It
seems like a lot of trouble (and more expense) to do this diet. I would do it in
a minute if I thought I had good reason. It seems like it's worked really well
for a whole lot of people. Do most kids who respond to this also have physical
symptoms that get better? How do you know (especially for a 2 yr.old) if it's
the diet that worked or something else? This is something I have not yet
researched fully, because I have too many other things to learn about right now.
So I guess my question is, "Is there a good chance this will be helpful
with my son's autism, even though he shows no other signs of needing a dietary
change?”
Dana
We have been gfcf for over 2 years. I have three of my four kids with
dietary restrictions. My son was VERY low functioning. It took him maybe 13
months to have all the gluten removed from his body and I saw some good things,
but he was still very low functioning, although better.
I learned that he does not tolerate basically any foods. So I started him on
digestive enzymes from HNI. They help with most foods but not all, so he is
still gf, but no longer cf, plus he still can't have cane sugar, some nuts and
fruits, and most supplements.
Now I am chelating him, plus my other kids also. He tolerates more foods now
than he did before. I am hopeful that when we are finished chelating the metals
out, he will be able to eat all foods without restrictions.
The best thing is now with diet and enzymes and chelation, my son no longer
qualifies as autistic. He started very low functioning and has a dx of
"classic genetic Kanner's autism", the pediatric neurologist who
diagnosed him told me "he might be able to live in a group home
someday". Now he is basically a typical kid of a younger age than his
chronological age. So I am very happy about that, it appears that he can be
independent when he is adult.
Some kids do just fine with enzymes and not diet. Some kids do just fine with
chelation and not diet. Some kids do not benefit from diet/enzymes/chelation.
But I am very glad I found what my son needed.
Here is his story, as well as other stories of recovery, for anyone interested.
http://www.autismchannel.net/dana/recover.htm
Kirkman
Laboratories: Guide to Intestinal Health in ASD: http://www.kirkmanlabs.com/Publications/Books/Gut_Protocol.pdf
ANDI:
http://www.autismndi.com/
GFCF Diet
and Food: http://www.bbbautism.com/dan_gfcf_diet.htm
Nutritional
Approaches to ASD/PDD: http://www.bbbautism.com/nutrition_contents.htm
BBB Autism
E-News; Chelation Issue: http://www.bbbautism.com/volu_2_iss_5_chelation.htm
The Living
Sensibly Foundation: http://www.livingsensibly.org/index.html
GFCF in
Canada: http://www.bbbautism.com/gfcf_canada.htm
RECOMMENDED
READING – BY PARENTS
Unraveling
the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi ISBN:
0684831643; Simon and Schuster (dietary intervention for autism)
Diet
Intervention and Autism Implementing the Gluten Free and Casein Free Diet for
Autistic Children and Adults - A Practical Guide for Parents by Marilyn Le Breton
ISBN: 1853029351; Jessica Kingsley Publishers (dietary intervention for autism)
Special
Diets for Special Kids
by Lisa Lewis ISBN: 1885477449; Future Horizons (dietary intervention for
autism)
New!
Special
Diets For Special Kids TWO, by Lisa S. Lewis, Ph.D. ISBN:
1885477813, Future Horizons, Incorporated
Is This Your Child?: Discovering and Treating
Unrecognized Allergies in Children and Adults by Doris
J. Rapp
ISBN:
0688119077 Morrow, William & Co
Biological Treatments for Autism and PDD
by William Shaw, Great Plains Laboratory Inc; ISBN: 0966123816
The Yeast Connection Handbook: How
Yeasts Can Make You Feel Sick All Over and the Steps You Need to Take to Regain
Your Health by
William G. Crook ISBN: 0933478240 Professional Books/Future Health,
Inc
WHERE
TO BUY PRODUCTS
Gluten Free Pantry locations: http://www.glutenfree.com/stores.htm
Miss Roben’s Online: http://www.missroben.com/
Ener-G Foods: http://63.249.18.35/Index.tmpl
Kinnikinnick Foods: http://www.kinnikinnick.com/welcome.html
Glutino: http://www.glutino.com/english/index.cfm
Special Foods: http://www.specialfoods.com/
Juice Plus +: https://www.juiceplus.com/
Note: Inclusion here is not an
endorsement by BBB Autism/ASO York
UPCOMING PARENT EMPOWERMENT WORKSHOPS
...Proudly Presented by Autism Society Ontario ~ York
Region Chapter and BBB Autism Support
Network
Registration
Required, Limited Enrolment. Email asoyork@axxent.ca Location: 11181 Yonge
Street, Richmond Hill
…HOPE TO
SEE YOU THERE
Wills
and Estates ~ Robyn Solnik TUESDAY, FEBRUARY 19, 2002
Art
Therapy ~ Nancy Wood, Art Therapist TUESDAY, MARCH 5, 2002
Siblings
of Children with Autism ~ Victor Predo, TRE-ADD TUESDAY, MARCH 26, 2002
Autism
& Sexuality ~ Deanna Pietramala, Leaps & Bounds TUESDAY, APRIL 9,
2002
Social
Skills ~ Deanna Pietramala, Leaps & Bounds TUESDAY APRIL 23, 2002
School
Discipline & The Exceptional Student
~ Lindsay Moir TUESDAY, MAY 7, 2002
Behavior
Management ~ Deanna Pietramala, Leaps & Bounds TUESDAY, JUNE 4, 2002
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Volume
2; Issue 1 IEP
Volume
2; Issue 2 KEEPING YOUR COOL - WHEN YOUR EMOTIONS ARE ON FIRE
Volume 2; Issue 3 DEALING WITH STRESS
Volume 2; Issue 4 GIFTS FOR THE CHILD WITH ASD
Volume 2; Issue 5 ONE CHILD’S STORY – A TALE OF LOVE AND INTERVENTIONS
Volume 3; Issue 1 SURVIVING THE HOLIDAYS
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Volume 3; Issue 3 PARENT (AND GRANDPARENT) PIONEERS 2002
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Hi! Adele Vance Tilton of About.Com’s autism/pdd community has generously invited us to borrow their wonderful chat room to use for our chats. The following is a detailed description of how to access this room.
1. Copy/Paste this URL into your browser: http://autism.about.com/index.htm?rnk=c1&terms=autism
2. On the grey bar (under Adele’s picture) click on "CHAT".
3. Click on "Log on to Chat".
4. On this page: (a) Under "nickname", delete "guest" and type in a name for yourself. (b) Choose your preferred "font size".
5. Click on "Connect" and after a very short time; your chat screen will come up.
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For chat questions, please email liz@deaknet.com
CONTAINS PRACTICAL INFORMATION BY PARENTS FOR PARENTS Available on request, e-mail liz@deaknet.com and ask for: (now available in PDF format)
1. Halloween
2. Epsom Salts (long version)
3. Epsom Salts (condensed)
4. Pros and Cons of telling your ASD child his/her diagnosis
5. How we advocate for our children
6. Guide to holidays and large family gatherings
A notice to our readers...
The founders of this newsletter and the BBB Autism support club are not physicians.
This newsletter references books and other web sites that may be of interest to the reader. The editor makes no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites or in the books, and specifically disclaims any liability for any information contained on, or omissions from, these books or web sites. Reference to these web sites or books herein shall not be construed to be an endorsement of these web sites or books or of the information contained thereon, by the editor.
The editor reserves the right to make decisions as to whether contributions are appropriate with respect to content, length, etc. We will not publish offensive material using foul language, or contributions that are inflammatory or disrespectful to decisions by other parents (i.e. therapies). We do not generally accept contributions if they are ads for private service agencies/clinics. We are also unable to accept contributions after an issue has been completed. We reserve the right to edit content, but will inform you in advance if we are going to do this. J
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