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The Truth About the Gluten-Free, Casein-Free Diet
for Autism and PDD
What on earth are
gluten and casein? Can removing them from my child's diet really improve the
symptoms of autism and Pervasive Developmental Disorder (PDD)?
Gluten and casein are getting a lot of
attention in the autism community and from doctors in the "Defeat Autism Now!"
biomedical movement. Some parents, doctors and researchers say that children have shown
mild to dramatic improvements in speech and/or behavior after these substances were
removed from their diet. Some also report that their children have experienced fewer bouts
of diarrhea and loose stools since starting a gluten-free, casein-free (GFCF)
diet. Author and autism consultant Donna Williams ,
who has autism herself, says she has been helped by "nutritional
supplements together with a dairy/gluten-free and low Salicylate diet."
Some people report no benefits from the GFCF diet. (Salicylates are
found in some fruits likes apples and other foods).
Gluten and gluten-like proteins are found in
wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and
foods made from those grains. They are also found in food starches, semolina, couscous,
malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable
proteins.
Casein is a protein found in milk and
foods containing milk, such as cheese, butter, yogurt, ice cream, whey and even some
brands of margarine. It also may be added to non-milk products such as soy cheese and hot
dogs in the form of caseinate.
The theory is that some people with autism
and PDD cannot properly digest gluten and casein, which form substances that act like
opiates in their bodies. This "drug" substance alters the person's behavior,
perceptions, and responses to his environment, according to this theory. Research in the
U.S. and Europe has found substances with opiate activity in the urine of a significant
number of children with autism. A doctor can order a urinary peptide test
that can tell if proteins are not being digested properly.
There is growing interest in the link between
autism and gastrointestinal (GI) ailments. A study by the University of California Davis Health
System found that children with autism born in the 1990s were more likely to have
gastrointestinal problems, including constipation, diarrhea and vomiting, than autistic
children who were born in the early 1980s. Some people use the GFCF diet
mainly to ease gastrointestinal problems and food allergies or
sensitivities.
Studies are currently underway to examine the
effectiveness of the GFCF diet, which has not gained widespread acceptance in the U.S.
medical community. One recent study found behavioral improvements in
children on a GFCF diet, while another study found no significant
effects from the diet.
Allen Lewis M.D. wrote in the Autism Society of America
publication, Advocate, "Controlled studies of the GFCF diet and the
ketogenic diet have indicated improvement. A dietary trial is safe and the best way to
determine if dietary restrictions are of benefit."
Medical tests can determine if your child has a sensitivity
or an allergy to
gluten, casein and other foods such as eggs, nuts and soybeans. Any pediatrician or a physician from the DAN! (Defeat Autism Now!) list can order these tests
before you begin the diet.
Before you consider a change in your child's
diet, consult with a physician and nutritionist to make sure you are providing an adequate
diet and nutritional supplements, if necessary. Also, please read any of the books and web
sites about the diet (listed below).
Some advocates of dietary intervention
suggest removing one food from the diet at a time, so you will know which food was causing
a problem. It also is helpful to ask people who do not know about the dietary change if
they see any improvement after a few weeks.
It's often suggested to remove milk first
because the body will clear itself of milk/casein the quickest. Gluten may be removed a
month after the elimination of milk. It may take up to six months on a gluten-free diet
for the body to rid itself of all gluten. That is why most advocates suggest giving the
diet a trial of six months.
The diet can seem like a lot of work, at
first. You must carefully read the ingredients on food packages. Beware of
"hidden" casein and gluten in ingredient lists, such as curds, caseinate,
lactose, bran, spices or certain types of vinegar. It may be hard to locate a substitute
for the milk your child loves, although many children do adapt to the gluten-free,
casein-free (GFCF) soy, potato, almond and rice milk substitutes available. (Companies
listed below). Many of these substitutes are enriched with calcium and Vitamin D. In
addition, many parents provide vitamin and calcium supplements to their children on the
diet.
Many communities have health food stores or
regular supermarkets that stock flour, bread, crackers, cookies, pretzels, waffles and
pasta made of rice, potato or other gluten-free flours. There also are several
online and mail-order businesses that sell GFCF foods
and vitamins.
Also, some web sites list commercially-available foods that are gluten-free and
casein-free, such as Heinz ketchup, Bush's Baked Beans and Ore-Ida Golden Fries. Some
prepared foods originally developed for people with Celiac Disease, another form of gluten
intolerance, now come in casein-free varieties, too. For fun or to save
money, some families choose to make their own GFCF foods using some of
the cookbooks below.
Foods that CAN be eaten on a gluten-free,
casein-free diet include rice, quinoa, amaranth, potato, buckwheat flour, soy, corn,
fruits, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and
sorghum, among others.
Author
Karyn Seroussi
says her son now has no traces of autism, due in large part to a strict GFCF diet. Some
parents report improved eye contact, less constipation or diarrhea, and better behavior.
However, other parents do not notice a difference in their children.
Besides gluten and casein, some parents
report that removing corn or soy led to equal or greater improvements in their children.
Because soy protein is similar to gluten and casein, some diet proponents recommend
removing it if the child seems sensitive.
Research into the GFCF diet
continues. "Although the hypothesis may appear 'off the wall' in many
respects, there are a number of pieces of evidence, which seem to
support them. The ideas are compatible with virtually all the accepted
biological data on autism and are therefore worthy of consideration. The
dietary method must still be considered as experimental and no positive
results can be promised or are claimed for every person," according to
Paul Shattock and Dr. Paul Whiteley of the British Autism Research
Unit at the University of Sunderland, which provides scientific
information on the diet.
The Details: Books,
Recipes and
Web Sites (return
to top)
A useful free web site is
GFCFdiet.com,
which publishes a list of commercially available GFCF foods,
acceptable ingredients, manufacturers' phone numbers and more.
Special Diets
for Special Kids: Understanding and Implementing Special Diets to Aid in the Treatment of
Autism and Related Developmental Disorders by Lisa Lewis, Ph.D. One of the first books
to explain the gluten-free, casein-free diet and how it can help treat autism. Her
explanation of the science behind the diet is not as easy to follow as Seroussi's.
However, this book has more than 150 recipes for breads, cakes, candy, chili, macaroni and
cheese, etc.
 |
Special Diets
for Special Kids, Two by Lisa Lewis, Ph.D. A sequel to her first book (above) with
more than 175 new gluten-free, casein-free recipes and cooking tips. Recipes for
peanut butter bread, bananaberry shake, oven fries, barbequed chicken pie and other foods
that kids will eat. |
The
Gluten-Free Gourmet Cooks Fast and Healthy: Wheat-Free Recipes with Less Fuss and Less Fat
by Bette Hagman and Joseph A. Murray. Hagman is the author of several excellent,
gluten-free cookbooks.
|
Enzymes for
Autism and other Neurological Conditions. Author and parent Karen L. DeFelice
discusses the role of enzymes in helping people with autism digest foods that create
problems for them. Some parents use enzymes alone, or in addition to a gluten-free, milk-free diet,
or to handle diet infractions.
Updated
edition |
 |
The Encyclopedia of Dietary Interventions for the Treatment of Autism and Related Disorders
by diet gurus Karyn Seroussi and Lisa Lewis Ph.D. For the experienced
diet follower, or for any parent or professional who wants a reference
guide to the ways dietary changes can be used for ASD.
AutismWeb's Message Board has a
section for discussing Diet and Biomedical treatments.
Article on making
healthy GFCF lunches for school, by Dr.
Pamela Compart and nutritionist Dana Laake.
The
Autism
Network for Dietary Intervention web site is founded by Lisa Lewis and Karyn Seroussi, who have
written the most popular books on the GFCF diet.
See our Book Store for
reviews of books about
Biomedical Treatments.
Autism One Radio features
Web programs on diets and biomedical treatments plus interviews with
health care providers and parents.
Enzymes
and Vitamin / Mineral Supplements
(return
to top)
Many doctors and nutritionists in the
Defeat Autism Now! (DAN) biomedical movement
recommend
enzyme
supplements to help some patients digest foods that cause problems for them. Also, a
number of DAN! practitioners recommend specific vitamins, such as B-6 and methyl B-12;
minerals such as calcium,
magnesium and
zinc; amino acids such as taurine and glutamine;
and supplements such as probiotics
and purified fish oil for children with autism.
Calcium , magnesium and Vitamin D are
especially important for children on a casein-free diet to replace nutrients found in
cow's milk.
According to NICHCY, "Some
anecdotal evidence has shown that Vitamin B6 and magnesium help children
with autism and PDD-NOS. The rationale for this is that Vitamin B6 helps
the formation of neurotransmitters, which are thought to malfunction in
such children."
Parents should consult their child's health
care provider about dietary changes and nutritional supplements.
GFCF vitamins and dietary supplements:
Mail Order and Online Retailers
of GFCF Foods
Retailers of multiple brands
of mixes, flours, prepared
foods, cereals, breads, etc.:
Gluten-free, milk-free food at Amazon Gourmet
Gluten-Free Foods at Gluten Free Mall
Glutenfree.com
(casein-free, too)
Natural Grocers by Vitamin Cottage
(use their "shop by diet" link for GF and CF)
Gluten Solutions
Ready-to-cook GFCF meals
GFmeals by YourDinnerSecret
Makers of single brands:
Kinnikinnick Foods (breads,
mixes) 877-503-4466
Bob's Red Mill (flours and
baking mixes) 800-349-2173
Miss Roben's (baking mixes) 800-891-0083
Domata Living Flour (GFCF
flour)
Manufacturers of milk substitutes:
Soy milk beverages
Pacific Foods 1-503-692-9666
Vance's Darifree 1-800-497-4834 Eden Blend 1-313-973-9400
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