The Gluten
and Casein Free Diet
A Dietary
Approach for the Treatment of Autism
Allyson Giangiulio
Autism: Background
Information
Autism is a developmental
disability which is usually first diagnosed in children between the ages of one
and three. Autism is thought to affect over 1.5 million people in the
U.S. alone and
is rising at a rate of 10-17 percent per year. It is the third most common
developmental disorder. It is more common than childhood cancer, and occurs in 1
out of every 500 births. It is more pervasive in boys, for reasons which are
unknown, and occurs in a ratio of 5 boys for every girl (http://www.autisminfo.com/QuickFacts.htm),
(http://www.autism-society.org/site/PageServer?pagename=FAQ).
Autism is characterized by social and communication skills impairment. Autism is
a spectrum disorder and thus occurs within a wide range of severity. While there
are behaviors common to autism, the amount, combination, and severity of these
behaviors can be manifested in a number of ways depending on the severity of the
disability. Some common characteristics of autism are: little or no eye contact,
lack of affection, unresponsive to own name, difficulty learning language,
little or no verbal communication, repetition of words, using hands instead of
verbal communication, rocking, spinning of objects, no interest in other kids,
repetitive play for long periods of time, resistance to change, aggression
toward self or others, no real fear, either more or less sensitivity with all
five senses. (http://www.autisminfo.com/Whatis.htm),
(http://www.autism-society.org/site/PageServer?pagename=FAQ
).
While the
cause is still unknown, it is thought that Autism results from brain
abnormalities. It is not clear whether these abnormalities result from genetic,
medical, environmental, or pregnancy problems. It is known, however, that autism
is not a psychological disorder, but instead is something that children are
either born with or born with the potential to develop.
There is
no known or proven cure for autism, however there are many experimental
treatments currently being practiced, including special education interventions,
treatments targeting behavior and communication, as well as medical, and dietary
approaches. One such dietary approach has been gaining a great deal of attention
over the last few years. The gluten and casein free diet while still largely
experimental, and has not yet been accepted by the medical community. However
anecdotal reports and new research indicate that the gluten and casein free can
have a large impact on the behavior and overall quality of life of people with
autism. The diet has caused a lot of attention especially in the
United
Kingdom and the
United
States.
Evidence is still largely anecdotal, however it appears as though restricting
the diet of an autistic person can have the potential to reduce the symptoms of
autism and in some cases “cure” the disability (http://members.aol.com/lisas156/gfpak.htm),
(http://www.autismndi.com/PMarticl.htm).
The
Gluten and Casein Free Diet: How it Works
The
gluten and casein free diet works by eliminating the foods that contain the
proteins of gluten and casein which act as opiates in the central nervous
systems of people with autism (http://www.livingwithout.com/feature_llewis.htm).
Gluten
and Casein
Gluten
and casein are similar proteins which are found in food products. Gluten is
found mostly in wheat, oat, rye, barley, spelt, kamut, tritacale, and semolina,
and other grass foods. It can also be found in other grains, food starches,
flavorings, artificial colorings, malt, and some vinegar. Casein is a protein
found in milk and milk products such as yogurt, cheese, ice cream, butter, some
margarine. Casein is also sometimes added to other food products which do not
contain milk. It is thought that these proteins work as a sort of toxin in the
bodies of some children and thus cause autism. (http://www.autismweb.com/diet.htm).
‘Leaky
Gut’
This
toxicity occurs due to a ‘leaky gut’ common to autistics. The term ‘leaky gut’
refers to small holes in the intestinal tract through which proteins such as
gluten and casein could probably leak. The cause of such a leaky gut is unknown;
however, it is thought that it might be caused by genetic or environmental
toxins combined with a trigger of some sort. Possible triggers may be a virus, a
vaccine, yeast infection, or a reduction in phenol sulfur transferase, which
lines and protects the intestinal tract. It is theorized that some people with
autism cannot completely digest these gluten and casein proteins, and in fact,
autistics are found to have higher levels of these proteins than an average
healthy person. When gluten and casein are not completely digested, they act
like opiates (opium or other narcotics) in a person’s body. In addition, because
of the ‘leaky gut’ the proteins are able to leak out into the bloodstream and
into the brain. This would explain the seemingly distorted perceptions,
behaviors, and responses of autistic children. In fact, they may be manifesting
characteristics of being on an opiate drug- like substance. In addition to this
it has also been found that there is a chemical compound called dermorphin in
autistics. Dermorphin is a drug like chemical which causes greater
hallucinations than LSD. Therefore, being autistic may be very similar to being
on heavy drugs. It is thus thought that removing foods which contain casein and
gluten from an autistic’s diet will remedy most if not all of the autistic
characteristics, as it will remove the drug like substances in their body and
brain (http://www.autism.org/leakygut.html),
(http://www.livingwithout.com/feature_llewis.html).
Support
for this theory comes from the gluten and casein peptide levels being found in
children’s urine. This theory would also explain why children with autism
develop normally during the first year of life. Children are not usually
diagnosed with autism until they are at least 1 year of age. It isn’t until
around this age that children typically begin consuming
diets which contain gluten and casein.
Does It Really Work
Support
and Evidence Found Online
It is thus thought that removing foods
which contain casein and gluten from an autistic’s diet will remedy most if not
all of the autistic characteristics. And in fact, this is what largely has been
found as indicated by online sources. Most of the evidence of the diet’s
effectiveness is anecdotal and thus not scientific. However, those anecdotes of
parents who have put their autistic child on the diet claim that it not only
remedies some of the autistic symptoms, but in some cases even “cures” their
child. It is important to note, however, that some families have found no
positive results with the diet. Though, not every autistic is found to have
elevated levels of the proteins and levels of opiate like substances. Most of
the anecdotal evidence found online does indicate at least some improvement.
Parents and caregivers have been implementing the gluten/casein free diet for
over twenty years; however, because there was little to no scientific research
on the diet years ago, it has been slow to catch on, and only has done so
through word of mouth. The treatment has not yet been accepted by the medical
community, and thus doctors do not typically recommend the diet. However, this
diet as a form of treatment has gotten much attention in the past few years, and
there are now a number of studies and research projects done and being done on
the effectiveness of removing casein and gluten in order to improve the
conditions of autistics (http://www.nlm.nih.gov/medlineplus/autism.html).
The GFCF diet is now quickly
becoming noticed and more accepted by the medical community.
Support
and Evidence found in Professional and Scientific Journals: A Literature Review
While the
gluten and casein free diet is still not accepted by the medical community,
there have been a number of studies which support the claim that the diet can be
used to treat autism. One review indicates that there had been published studies
on the diet dating back twelve years prior to their study in 2001. The
researchers claim that of those studies, only one did not report positive
results from the GFCF diet (Knivsberg, Reichelt , Nodland 2001). More recent
studies over the past few years indicate similar results. Knivsberg et al. more
recently performed a single blind control study with randomized diet and control
groups. It was found that those children on the GFCF diet developed
significantly better than those not on the diet (Knivsberg, Reichelt, Hoien,
Nodland ,2002).
There
have also been some studies on the specific short and long term effects of the
diet. One study monitored children on the gluten free diet over 5 months. They
found improvements in behavior over this time; however they did not see a
reduction of peptide levels in the urine (Whiteley, Rodgers, Savory, Shattock,
1999). Another study found that the urine and peptide levels were normal after
one year of being on the diet, and that the children’s behavior and skills had
improved. When the children were tested four years after they had begun the
diet, they were still found to be improving (Knivsberg, Reichelt, Nodland,
Hoien, 1995). A study by Lucarelli et al. indicates that the removal of even one
type of problem food, in this case milk, can have a positive impact. When milk
(which contains casein) was removed from the diet of infants with autism, the
infants exhibited noticeable behavioral improvement within 8 weeks of the onset
of the diet (Lucarelli, Frediani, Zingoni, 1995). On the contrary, a lack of
support for the diet was found in a study done by Sponheim. Seven children with
autism were tested to see if they benefited from the gluten and casein diet. It
was found that there were no improvements in behavior when the children were
placed on the diet for 6 months. In addition, they found the diet to further
socially isolate the children and their families (Sponheim,
1991).
Evidence
for the opiate theory of gluten and casein can also be found in the literature.
One study tested the urine of children who had improved on the GFCF diet and
found that there was a decrease in the peptides in the children. They thus
concluded that opiate like peptides are from the diet. Another study found that parents report
that their children have “withdrawal” like symptoms when placed on the gluten
and casein diet (Whitely, Rogers, Shattock, 2000). Contrary to these studies,
however, a review done by Cocchi in 1996 argues against the theory of opiods
being the cause of autistic symptoms. After a review of previous literature, it
was found that not all children respond to the GFCF diet. It is thus argued that
opiods might play a secondary role and may be linked to the “stress of the
illness”, but that they are not connected strongly enough to autistic symptoms
to indicate a causal link (Cocchi, 1996)
In
addition to the scientific support for the diet, one study was performed to test
whether children on the GFCF diet were getting enough nutrients on such a
restricted diet. Results indicate that those children on the diet are no less
healthy than individuals not on the diet, and that they are not lacking any
nutrients. In fact, it was found that those children on the diet consumed more
fruit and vegetables than those children not on the diet. Further, the kids in
the non-diet group were below the Lower Reference Nutrient Intake for more
nutrients than the kids who were on the diet. No significant differences were
found between the groups (Cornish, 2002).
Overall,
most of the scientific literature which can be found (there are a number of
studies in different languages) indicates that there is an overwhelming support
for the GFCF diet as a treatment to reduce autistic symptoms. There are a few
researchers which seem to dominate the literature and research on this topic.
Some of the most influential include Dohan, Reichelt, Shattock, Cade (http://www.autismndi.com/studies.htm) . It is important to note, however, that most of the
studies have extremely small sample sizes. There are many single case studies;
and most of the studies of larger samples seem to have fewer than 50 subjects
(including healthy controls). Therefore, it is hard to generalize findings
across the autistic population.
Is the
Gluten and Casein Diet Right For Every Child?
Testing
for Gluten and Casein Peptides
Gluten
and casein digestive problems may not be the reason for a child’s autism. In
fact, not all autistics have been found to have opiates in their urine. There
are tests that parents can have done in order to see if there are opiate
peptides in the child’s urine. However, caution is advised when choosing to test
a child. There have been reported incidents of false tests. Sometimes tests do
not reveal signs of the peptides. Some families have been made aware of
extremely high levels of the opiates only after testing was performed by a
second lab. Most online sources report that the best test is to try the gluten
and casein free diet (http://www.autisminfo.com/diet.htm).
Parents’
Evaluations and Warnings
Some
parents argue that the GFCF diet is an inexpensive, harmless approach, and that
it is compatible with any other form of treatment. In addition the effects are
immediate and there are no known negative effects. Other parents and sources
note that implementing the diet can be a somewhat complex and daunting task. It
can be especially hard to learn about the contents of foods, especially those
with hidden gluten and casein ingredients, and even the contents of one’s own
ingredients. Certain food products must be purchased and often are more costly
than more common foods. One must also adopt new recipes and sources for cooking.
Much research must be done, and sites claim it is necessary to buy informational
books as well as special gluten/casein free cookbooks. It can also be difficult at times to get
skeptical relatives, teachers, and other caregivers to strictly abide to the
rules of the diet when the child is in their care. Any slip up can have negative
effects and cause autistic characteristics to return. It is also important to
note that even though children show improvements very quickly often times the
children appear to get worse for a period of time as well. Behavioral problems
and physical problems such as fever, diarrhea, and vomiting have been reported,
especially when the diet is implemented suddenly. This may be due to a sort of
withdrawal effect, similar to that of drug addicts. Thus, the sites promoting
the GFCF diet advise that foods be removed gradually
(http://www.gfcfdietsupport.com/begfaq.html).
Even with the gradual removal of
foods parents should expect immediate noticeable improvements for a few days
followed by a period of regression. This hard period is said to pass within a
week for younger children and within three weeks for older children and adults.
Even those parents who warn that
implementing the diet can be a daunting task, though, also claim that it is
worth any hardships for the benefits it provides for their child and their
family.
Works
Cited
Cocchi,
Renato. (1996). On gluten free and casein free diet in
autism and the opiods’ excess theory: Another perspective. Italian Journal of
Intellective Impairment, 9, 139-152.
Cornish,
E. (2002). Gluten and casein free diets in autism: A study of the effects on
food choice and nutrition. Journal of Human Nutrition and Diuretics, 15,
261.
Knivsberg,
A.M., Reichelt, K.L., Nodland, M., Hoien, T. (1995) Autistic syndromes and diet.
A four year follow-up study. Scandinavian Journal of Education Research, 39,
223-236.
Knivsberg,
A.M., Reichelt, K.L., Nodland, M. (2001). Reports on dietary intervention in
autistic disorders. Nutritional Nueroscience,4,25-37.
Knivsberg,
AM., Reichelt, K.L., Hoien, T. Nodland, M. (2002) A randomized, controlled study
of dietary intervention in autistic syndromes. Nutritional Nueroscience, 5,
251-61.
Lucarelli,
S., Frediani, T., Zingoni, A.M. (1995). Food allergy and infantile autism.
Panminerva Medicine, 37, 137-41.
Sponheim,
E. (1991). [Gluten-free diet in infantile autism. A therapeutic trial] [Article
in Norwegian] Tidsskr Nor Laegeforen, 111, 704-7
Whiteley,
P., Rodgers, J., Savory, D., Shattock, P. (1999) A
gluten-free diet as an intervention for autism and associated spectrum
disorders: Preliminary findings. Autism, 3, 45-65.
Whiteley,
P., Rogers, J., Shattock, P. (2000). MMR and autism. Autism, 4,
207-211.
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