Understanding and Implementing a Gluten; Casein Free Diet:
(c)1994 Lisa S. Lewis, Ph.D.
Feedback to the Listowners.
In the three years since my son was diagnosed with autism, I have spent
hundreds of hours in libraries, and connected to computerized databases and
networks. Because I work at a university, I have access to these resources,
and the training and experience to use them. Through these media, as well
as connection to a world-wide computer network, (the so-called "Information
Superhighway") I have been able to gather together a great deal of
information.
In 1993, I began a dietary experiment that has proved extremely beneficial
to my son. Because I have spent so much time and energy searching for
answers as to why this has helped him, and how to implement this diet, I
have decided to put what I have found together and share it with other
parents and professionals. I hope you will find this packet useful. Please
feel free to share it with others who may benefit or who are simply looking
for more information.
To talk more about this subject you can send mail to lisas@pucc.princeton.edu.
What IS Gluten? Glutens are proteins found in the Plant Kingdom
Subclass of Monocotyledonae (monocots.) These plants are members of the
grass family of wheat, oats, barley, rye and triticale, and their
derivatives. Derivatives include:malt, grain starches, hydrolyzed
vegetable/plant proteins, textured vegetable proteins, grain vinegars, soy
sauce, grain alcohols, flavorings and the binders and fillers found in
vitamins and medications. Casein is a phosphoprotein of milk, which has
a molecular structure that is extremely similar to that of gluten.
The following article was written by members of the Autism Research Unit
of the University of Sunderland (Great Britain) and is reprinted with
permission. [Text in brackets are my additions.]
The Use of Gluten and Casein Free Diets with People with Autism. These notes
should be taken as observations. They do not constitute a recommendation or
endorsement of a dietary method to alleviate the symptoms of autism. Any
decision to undertake such a method must lie solely with the person with
autism or with those having responsibility for their care.
Background
In the early 1980's a number of researchers, including Herman and Panksepp,
noted the similarities between the behavioural effects of animals on opioids,
such as morphine, and the symptoms of autism. In a very speculative paper,
Panksepp proposed a mechanism whereby people with autism may have elevated
levels of opioids which occur naturally in the CNS (= brain) of humans. The
best known of these naturally occurring opioid compounds is beta-endorphin
(= endogenous morphine) and certainly there is a degree of correlation
between the known effects of this compound and the symptoms of autism.
Just after this, Gillberg produced evidence of elevated levels of "endorphin
like substances" in the cerebro-spinal fluid of some people with autism. In
particular, elevated levels appeared in those children who appeared to feel
pain less than the normal population and who exhibited self-injurious
behavior. At about the same time, Reichelt produced evidence of abnormal
peptides in the urine of people with autism. We ourselves, like a number of
other groups, attempted to replicate his findings. Although his technique
was comparatively simple there were technical difficulties and these attempts
were, initially unsuccessful. Later on we switched to a more sophisticated
technique and have been able to confirm Reichelt's findings. In the urine
of about 50% of people with autism there appear to be elevated levels of
substances with properties similar to those expected from opioid peptides.
The quantities of these compounds, as found in the urine, are much too large
to be of CNS origin. The quantities are such that they can only have been
derived from the incomplete breakdown of certain foods. Proteins consist of
long chains of units known as amino acids. Normal proteins are digested by
enzymes in the intestines and are broken down into these units. However, if
for some reason, this digestion is incomplete, short chains of these amino
acids (known as peptides) will result. It is proposed that these peptides
may be biologically active and could result in the symptoms which we see in
autism. The majority of these peptides will be dumped in the urine, which
is where Reichelt and we are finding them. A small proportion will cross
into the brain and interfere with transmission in such a way that normal
activity is altered or disrupted. It may be that these compounds,
themselves, have a direct effect upon transmission or that they will attach
themselves to the enzymes which would break down our own naturally occurring
enzymes. The consequences would be the same in either case.
It is well known that casein (from human or cow milk) will break down in
the stomach to produce a peptide known as casomorphine, which, as the name
implies, will have opioid activities. Similar effects are noted with gluten
from wheat and some other cereals [notably oats, barley and rye] in which
the compounds formed are gluteomorphins [or gliadinomorphins.]
If this opioid excess hypothesis is correct, there are a number of strategies
which can be adopted. Firstly the anti-opioid drug "naltrexone" could be
considered and promising results have been reported. [Note: a recent study
of 41 children conducted by Magda Campbell, did not produce positive results
with low doses of naltrexone. It is possible that doses were too low, but
for now effectiveness of this medical intervention must be questioned.]
Alternatively, a diet which excludes casein (milk and dairy products) or
gluten (wheat and other grain products) could be considered. It may be
possible to determine, from the pattern of the urinary peptides, whether
casein or wheat [gluten] or both should be avoided, but such conclusions may
be premature at this stage. It has been observed that those children whose
autism appears at or around the time of birth may have a problem with casein
whereas those whose autism becomes apparent at about two years of age, when
a wheat based diet is more likely to be adopted, have particular difficulties
with gluten. Some children may have difficulty with both.
Norwegian colleagues of Reichelt have published data which support the
effectiveness of such dietary programmes but these studies cannot be
considered as conclusive. There have been no other real attempts to
demonstrate the effectiveness of such diets on a scientific basis.
Numerous people have experimented on an individual basis and have reported
successful responses but such evidence cannot be considered as, in any way
conclusive. In Rimland's studies of parental reports, however, the results
appear to be very much superior to those obtained with any drug based theory.
Practical Aspects
The theoretical processes described here are toxicological in nature
rather than allergic. The results are akin to poisoning rather than an
extreme sensitivity such as occurs in coeliac disease or sensitivity to
certain food colourings [see discussion of celiac disease below for another
perspective on this topic.] Removal of gluten and/or casein containing
products requires the active participation of all those concerned with the
child's well-being. Tests have often been ruined by a well meaning relative
who ignores parental instruction, or by schools or therapists who feel that
the proposals are rubbish. Carers must satisfy themselves that the diet is
being adhered to before any evaluation is possible. Gluten and Casein free
products, together with advice on their use, are available from Pharmacies
[in this country health food stores will be the best source.] Nutritionists
and dietitians would also be able to advise.
Initially the reported effects may be negative, upset stomach, anxiety,
clinginess and slight ill-temper. Experience would suggest that these are
good signs and precursors of a positive response. Reichelt recommends a
trial period of three months. If it has not worked within that time it is
unlikely to do so. [Note: in electronic mail to me, Reichelt suggests a
period of one year is necessary.] Experience also suggests that the results
are more easily demonstrated in younger children. The effects in fully grown
individuals appears less impressive. Given that there appear to be a number
of possible causes of autism it is not unexpected that no unitary solution
will be found for all cases.
Conclusions
Although the hypotheses may appear "off the wall" in many respects,
there are a number of pieces of evidence which support them. The ideas are
compatible with virtually all the accepted biological data on autism and are
worthy of consideration.
The dietary method must still be considered as experimental and no positive
results can be promised or are claimed. The use of diet may well be far less
harmful than other medical interventions or therapeutic regimes. We would be
pleased to receive any feedback of a positive or negative nature from anyone
utilising such dietary modification in the amelioration of autism.
Autism Research Unit
School of Health Sciences
University of Sunderland
Sunderland, Great Britain
SR2 7EE
tel 091 510 8922
fax 091 567 0420
A quote from Reichelt in electronic mail sent to me:
"In general we recommend a diet free of gluten and casein for
autistic...patients. The reason for this is that opioid peptides from gliadin
are almost of the same structure as casomorphins from casein. We also
recommend addition of multivitamin with trace minerals and magnesium, cod liver
oil and calcium."
"We usually remove casein and gluten both. Opioids from these proteins are
very similar."
Gliadinomorphin (from gluten): Tyr-Pro-Gln-Pro-Gln-Pro-Phe
Casomorphin (from bovine casein): Tyr-Pro-Phe-Pro-Gly-Pro-Ile
Effects of diet if useful, tends to be cumulative. Must be tried for 1
year."
Related Articles
Knivsberg A-M et al. (1990) "Dietary intervention in autistic
syndromes." Brain Dysfunction, 3:315- 27.
Panksepp, J. (1979) "A neurochemical theory of autism." Trends in
Neuroscience, 2: 174-177.
Gillberg, C. (1988) "The role of endogenous opioids in autism and possible
relationships to clinical features" in Wing, L. (ed.) Aspects of Autism:
Biological Research. Gaskell:London, pp. 31-37.
Shattock, P. and G. Lowdon (1991) "Proteins, Peptides and Autism; Part 2:
Implications for the Education and Care of People With Autism." Brain
Dysfunction, 4:323-334.
O'Reilly, B. A. and R.H. Waring (1990) "Enzyme and Sulfur Oxidation
Deficiencies in Autistic Children with Known Food/Chemical Intolerances.
Xenobiotica, 20:117-122
The following letter was written by Paul
Shattock, of the Autism Research Unit in Sunderland. It was addressed to a
"listserv" on the Internet, the so-called Information Superhighway. A listserv
is like an electronic bulletin board system, where users can post queries and
opinions, and others can respond with their answers, ideas and their own
queries. Started in 1992, it now has thousands of users worldwide.
This letter contains details of research into the efficacy of the opioid excess
theory. I have edited Dr. Shattock's e-mail message to remove lines not
specifically relevant to this topic:
Date: Thus, 30 June 1994 14:41:05 +0100
From: P.SHATTOCK
Subject: Diet
These ideas have been rattling around for some time now and we hope to produce
evidence which can support or refute them. The opioid excess theory of autism
and the therapies which emanate from it are still speculative. There is
suggestive supportive evidence; the theoretical background is basically sound
and the whole concept very seductive. However this does not amount to proof.
Our study involves the collection of urine samples from a statistically
significant sample of people with autism and a variety of control groups. The
samples will be split into 3. Reichelt (in Norway) will use his (2) methods
(based upon Molecular Sieving and Immunoassay). We will use 2 entirely
different methods (HPLC) and Capillary Electrophoresis. Mike Gardner (in
Bradford, UK) will use an entirely different chromatographic method. Naturally,
all analyses will be performed blind to the clinical diagnoses. We will all be
looking for abnormal urinary peptide content.
In all, therefore, there will be 5 very different methods of analysis employed.
Very little research in the field of autism has been subjected to such rigorous
study.
The design of a double blind-crossover study using dietary intervention
presents difficulties. Performing such a study with meaningful measurements is
even more difficult. Obtaining ethical approval for such a study whereby people
with autism are required to eat experimental diets would (at least on this side
of the pond) be problematic but we will eventually have to overcome these
problems. The cry that any therapy cannot be verified by scientific evidence
is characteristic of the charlatan - it is not acceptable. We are constantly
getting anecdotal support for these ideas and will be attempting to confirm
these by means of interviews (and perhaps urinary analyses) in the coming
months. Paul Shattock
Sam's Story
My son Sam is six years old, and was diagnosed as PDDNOS (autistic) at
age three and a half. We believe that his development was normal for
approximately the first 18 months of his life. By two and a half Sam was in an
early intervention program, where he was said to have sensory integration
difficulties. By three he was in a multiply-handicapped half-day preschool,
and was receiving private speech therapy. Though he had language from an
appropriate age (13 months) by two it was far behind that of peers and was
characterized by (appropriately placed) echolalic utterances. When Sam was
three and a half, his father studied the DSMIII-R and realized that PDDNOS was
the only diagnosis that fit our son.
After a neurologist confirmed my husband's diagnosis we sought an independent
educational evaluation at the Eden Institute in Princeton, New Jersey. A
placement more specific to autism was recommended, and Sam was accepted at the
Douglass Developmental Disabilities Center for the next year. Meanwhile, we
had a summer to kill, and that summer was indeed a killer. Sam's behavior
became impossible, and for the first time aggression was prominently featured.
I removed dairy from his diet, as an experiment. The aggression decreased,
though it remained a significant problem.
Sam did very well at his new school, and behavior modification techniques
(including mild aversives) were tried to eliminate his aggressive behavior.
These behavioral interventions each helped for a time, but nothing really
erased the behavior. Ultimately we were uncomfortable with aversive techniques
and felt that they in fact escalated the behaviors; we thus withdrew permission
for their use.
In June and July, 1993, Sam's aggression suddenly increased. The aggressions
went to double digits during a five hour school day. Not knowing what else to
do I decided to experiment again with Sam's diet. I chose to remove wheat
because I knew it was a common allergen. After five days, Sam's aggressions
dropped dramatically. For the remainder of the school year, his
aggressions averaged 6.1/day. During the month he was on vacation, Sam did not
aggress at all. When he returned to school in September, his aggressions
dropped further, averaging 2.47/day over the next seven months. Sam also,
for the first time, began to talk about his aggression. Even when he lost
control he could now tell me "I don't want to hit or kick", and thus we could
discuss his behavior with him, and suggest alternatives.
In November, 1993, I found Reichelt's and Shattock's papers and realized that
gluten that was probably significant, rather than wheat. I had been using oat
and rye flour, and both these grains have high levels of gluten. As of
November, 1993, gluten was eliminated from Sam's diet. I didn't see the
immediate change I'd seen when we removed wheat but certainly his growth has
continued.
In the spring of 1994, Sam was placed on a strict anti-yeast diet with high
doses of the anti-fungal drug Nystatin. We were told that if this treatment
was to be of benefit, we would first see a regression. We indeed saw a
regression that lasted for three weeks and has been followed by a slow but
steady improvement in language and behavior. During this period Sam's
aggressions went back to pre-diet levels. Since then, aggressions averaged
<5/day. [Two days this summer account for the majority of aggressive
behavior. If these days are excluded from the data, the average drops to
1.076/day.]
I do not claim that the only thing that's helped Sam has been his gluten free
(g-f) diet. He has had two full years in an excellent special school. He has
had weekly speech therapy since age three, sensory integration therapy since
age four, and has been wearing yoke prism glasses for one year. A 0.05 mg.
dose of clonidine each night helps bring his activity level into the normal
range.
However, the change after removing wheat is undeniable, as is what happened on
the occasions he accidentally ingested gluten. On four separate occasions
Sam has ingested gluten without our knowledge, and the changes in him were fast
and quite marked. In each case we were able to determine what had caused
the sudden, and thankfully short-lived, regression.
I cannot be sure what has helped Sam the most. However, since I have a daily
record of his behavior and many of his utterances dating back to when he was
three, I can correlate changes with particular interventions. Because
autism is likely a disorder with multiple etiologies, it is unlikely that
every autistic person would benefit from this diet. I believe strongly,
however, that the approach is worth trying.
Because Sam responded so well to a g-f (and greatly reduced casein)
diet, I feel frustration that more parents have not been willing to try this
diet. However, I also know that I am lucky. My son is not a fussy eater, and
accepts the various substitutes I provide for him. He can now monitor his own
diet to a certain extent, refusing "regular" bread or cookies. He also eats a
wide variety of foods, much of it healthful. He takes the vitamin supplements
I give him with little trouble.
For a child with a very limited diet, I would start with lab tests to determine
if he is likely to benefit from the diet (see section on Testing). Of course,
all parents of children with extremely limited diets will want to broaden the
dietary choices the child will accept. However, if positive test results show
that gluten and or casein could be causing damage to the CNS, changing the diet
is critically important. Even for children who willingly accept wheat and milk
substitutes, testing is a good first step. Tests will not be valid once the
child has had gluten and/or casein removed from his diet for any length of
time.
A final note: The doctor who prescribed the anti-yeast program for
Sam, Dr. Sidney Baker of Weston, Connecticut, also ordered extensive
testing of blood, urine, saliva and stool. While most were normal, Sam was
deficient in eight amino acids. He was seriously deficient in five of these,
and low in zinc. At Dr. Baker's recommendation, each day Sam takes:
SuperNuThera vitamin compound, L-Lysine, Zinc and reduced glutathione.
Jake's Story
Jake was born when Sam was three and we watched his development carefully. When
Jake was nine months we were beginning to worry seriously. He showed little
pre-verbal development; he did not babble and made very few sounds. About this
time, the pediatrician said he was ready for milk. Cow's milk seemed to cause
an immediate change in Jake. He got fussier and had more stomach upsets. I
immediately went back to the store to buy formula. Then, in a moment that in
retrospect seems like an epiphany, I bought soy formula instead. Within two
days Jake was happier than he had ever been. Within three days he was saying
"mamamamam" "dadadada" etc. On his first birthday Jake had about ten words; by
15 months he had 200; by 18 months he spoke in sentences. He continues to
develop as an incredibly imaginative, verbally precocious little boy. In
addition to the joy he has brought to his parents, he is the best "therapist"
Sam ever had! Did I "save" him from autism? From some other developmental
disability? I'll never know.
Testing for Urinary Peptides
Because modification of the diet is far less invasive or harmful than most
interventions, it would seem logical to try this method. Many autistic
children, however, have such finicky eating habits that the idea of cutting
anything they will actually eat out of their dietary repertoire, strikes fear
the hearts of their parents. For this reason, some might prefer to test their
child's urine for the presence of the urinary peptides found by Reichelt and
others. If there are no peptides found, it is unlikely that the diet would
help the child. However, if the peptides are present and are escaping from
the gut into the bloodstream, it is believed that they can "mimic"
neurotransmitters and thus result in the scrambling of sensory input.
There is only one laboratory in the US (that I know of) that is doing this
testing. Because it is part of the lab's research, there is no charge for the
testing. Directions for the collection and shipment of the specimen can be
obtained by calling Dr. Robert Cade at the University of Florida at
Gainesville. His assistant, Malcom Privette can be reached at 904-392-8952.
Dr. Cade is not interested specifically in gluten intolerance in autistics, but
seems willing to test the samples of various autistic individuals.
If the test is positive for urinary peptides, you will still not know whether
the problem is casein or gluten (or both). Dr. Cade asks that participants
also have a blood test done (by another lab and at a cost of $50) which should
determine which protein is problematic. Mr. Privette can give you this
information too. Blood serum is assayed for IgA and IgG antibodies to the
following proteins: gliadin, gluten, lactalbumin, beta-lactoglobulin, casein
and ovalbumin.
If you have already tried the diet you will not learn anything meaningful from
the urine test. By eliminating gluten and casein from the child's diet, you
have removed the source of the peptides. It can take a long time to build them
back up to pre-diet (baseline) levels, and this is not advisable, especially if
the diet has proven helpful.
Testing for Celiac Disease
What is Celiac Disease (CD)? "Celiac disease (also known as Celiac
Sprue or gluten-sensitive enteropathy) is a chronic disease in which
malabsorption of nutrients is caused by a characteristic...lesion of the small
intestine mucosa. The lesion is produced, through unclear mechanisms, by
protein constituents of some cereal grains". (J.S. Trier, 1993) Traditionally,
doctors have suspected CD only when patients show poor growth, extreme
gastrointestinal problems and fatty stools. It is now known that many patients
with a sensitivity to gluten serious enough to damage the gut wall show no
such symptoms!
In patients with CD, the intestinal wall is excessively porous; not only are
nutrients improperly absorbed, but large molecules which should be
contained by the gut wall are not. This could be the way in which improperly
digested peptides pass into the bloodstream and then cross the blood-brain
barrier. Thus, the speculation that CD is present in some autistic children
who would benefit from a gluten free diet is not inconsistent with the opioid
excess theory of Reichelt and Shattock.
Various experts on autism seem to have long ago dismissed the idea that
gluten could be a significant causal factor. However, gluten exists as a
"hidden ingredient" in many foods, medicines and even in the envelope glue we
lick. It is possible that autistic children put on a so-called gluten free diet
were inadvertently ingesting gluten in minute amounts. For those with full
blown Celiac Disease, tiny amounts can be toxic; it is not so far fetched to
imagine that in less severe forms of gluten intolerance, minute amounts could
also cause harm. When full blown CD is diagnosed, it can take more than a
month on a gluten-free diet to see changes; again, it is not far fetched to
assume that the same is true for people with gluten intolerance that have
different outward symptoms. It may be then, that early researchers and
parents who tried this intervention in the past simply gave it up too soon.
Patients with full-blown CD often have terrible symptoms of gastrointestinal
distress, fatigue, failure to grow or gain weight. Therefore, these symptoms
are not ignored and the diet is changed when the child is relatively young.
But it is possible that far less severe forms of CD exist and are, in fact,
quite common. If so, these could go undiagnosed for years. Undiagnosed, the
toxic effects of the ingested gluten could prove extremely damaging and could
cause what is likely to be permanent damage to the central nervous system.
According to Reichelt, there are fifteen opioid sequences in a single
molecule of gluten!
According to an article by Dr. Allessio Fasano in the most recent newsletter of
American Celiac Society:
In recent years there has been a noticeable change in the age
of onset of symptoms and the clinical presentation of celiac
disease. Because the typical symptoms of gastrointestinal
dysfunction are frequently absent in older children, the diagnosis
beyond the first two years of life is more difficult and often delayed.
These cases are now regarded as having atypical or late onset
forms of celiac disease.
Rimland and Meyer noted as long ago as 1967, that children with the highest
scores on Rimland's E-2 Diagnostic Checklist also showed many gastrointestinal
symptoms. It has also been suggested that CD is an auto-immune disorder with
gluten stimulating increased synthesis of some antibodies in CD patients. Ruth
Sullivan noted that "though few children with celiac disease have autism, it
seems a disproportionate number of autistic children have celiac. Why? Does
malabsorption of the small intestine prohibit vital substances (like
serotonin...) from reaching the brain? If so, why do not all `classic cases'
have celiac? Or do they? (1975)"
A disorder very closely related to celiac disease, and necessitating the same
dietary intervention, is a skin disease known as dermatitis herpetiformes
(DH). According to the newsletter of the American Celiac Society,
"Dermatitis herpetiformes is the skin manifestation of gluten sensitivity and
70-80% of DH patients have coexisting damage in the intestine." In many cases
DH sufferers have no outward signs of intestinal difficulty, and yet at least
70% actually do suffer from CD! DH appears as a bumpy rash, usually on the
arms, legs or buttocks. It is extremely itchy and may also burn.
My own son had such a rash on his arm and inner thigh. This rash first
appeared at approximately age 2 (around the age his autistic symptoms also
appeared) and was diagnosed by our pediatrician and two dermatologists as
severe eczema. All prescribed cortisone creams but the rash did not
improve.
It was so itchy that my son would frequently scratch until he bled.
We removed all synthetic fibers, dressing him in only 100% cotton washed in
soap that had no colors or dyes. Nothing helped.
Then, as mysteriously as it appeared, the rash went away. Around the time that
I changed my son's diet I began giving him evening primrose oil, which was said
to help eczema. I credited the oil and bought several bottles. Then I stopped
using it and the rash did not reappear. I now realize that the cause of the
improvement was probably not the oil, but rather the removal of gluten from
Sam's diet! Though I cannot have the tests run (because he is been off gluten
too long) I am convinced that he was likely showing signs of DH, which were
unrecognized by the doctors who saw it.
New blood tests show latent and sub-clinical cases of CD. Because even latent
celiac disease will cause damage to the intestinal wall, it makes sense to have
these tests run. The relevant tests involve screening the blood for celiac
antibodies. The tests are called endomysial IgA, gliadin IgA and reticulin
IgA. The blood test can rule out or suggest Celiac Disease. If CD is not
ruled out it can only be confirmed via intestinal biopsy. If a gluten free
diet has already been implemented, these tests will not be valid. While these
tests will not reveal a possible sensitivity to casein, they should certainly
be done on children who developed normally for up to two years (and who are
thus more likely sensitive to gluten). Additionally, many autistic children
toilet train late, which delays the possibility of collecting a 24 hour urine
sample. Not all labs are equipped to run these tests. If a local lab cannot
do it, you might want to contact Specialty Laboratories, Inc., in Santa Monica,
CA at 310-828-6543
Although no child will willingly donate blood, all four tests can be performed
following a single draw. While it is doubtful that all autistic people will
turn out to have celiac disease, these tests should be performed to rule it
out. Certainly CD causes a leaky gut; if various proteins are being
improperly metabolized, such a gut would provide a pathway into the
bloodstream for these peptides. Clearly these tests should be added to the
battery that children undergo when a diagnosis of autism, PDDNOS or atypical
autism is made.
Intestinal Permeability tests also exist, and should be performed, if
possible. This test requires a patient to ingest a sweet drink provided by the
lab performing the test, then eat nothing for several hours. This is followed
by a collection of all urine for the next 24 hours. This test must be ordered
by a doctor, and will show whether or not the patient has a "leaky gut." If
the child is not toilet trained, a bag (obtainable from your doctor) can be
taped used to collect urine at each diaper change.
Sulfur-Transferase Deficiency
Preliminary studies by Rosemary Waring, of the University of Birmingham, UK,
suggests an abnormality in the sulfur-transferase system in autistic people.
Of forty children tested, all showed extremely low capacity to oxidize sulfur
compounds. The enzyme deficiency found would mean that these children will be
unable to fully metabolize certain foods and chemicals that contain phenols and
amines. Thus, substances that should be metabolized would build up to abnormal
levels, substances which include serotonin, dopamine and noradrenaline. The
children most likely to show this deficiency (based on her small sample size)
showed normal development for the first 18 months to two years of life, and
also show family histories of asthma, skin problems and migraine, as well as
sensitivity to foods (especially wheat, milk and salicylates.) Many metabolic
processes can be disturbed by phenolic compounds and cause many physical
problems that may not have been previously thought connected to autism
(excessive thirst, night sweating, facial flushing, reddened ears etc.)
The variation in serotonin metabolism may be less significant than another
outcome of a suIfur-transferase abnormality--namely, the effect this deficiency
would have on the permeability of the intestinal lining. One outcome of an
improperly operating sulfur-transferase system is insufficient connective
tissue in the gut wall. Thus, this deficiency could be yet another reason
(besides Celiac Disease and other gastrointestinal ailments) that the gut wall
would be "leaky." This would mean that improperly metabolized proteins (such
as gluten or casein) would be able to escape the gut lining into the
bloodstream.
I know of no lab in this country that tests sulphur-transferase. Nor is there
any standardized, recommended treatment . However, since it does effect the
gut wall, this may be something to look into if celiac tests come up negative
and yet you suspect that your child would benefit from the gluten free diet. I
noted above that my son's urinary amino acids tests revealed a serious
deficiency in five amino acids. Each of these is a sulfur-carrying amino acid.
I am informed, by Dr. Baker, that this is a pattern he sees very frequently in
autistic patients. It will be interesting to follow Dr. Waring's research to
determine if there is a relationship between her theories and the deficiencies
he finds. Because the sulfur-carrying amino acids are involved in the
detoxification of the body of both exogenous and endogenous pollutants,
disturbances in these systems indicate disturbed immune systems. Considering
how frequently these children suffer from numerous infections and allergies,
this is not an unlikely assumption. In some parts of the country immunological
approaches are being taken with some benefits to autistic children, and it is
possible that for some the cause of autism may be an auto-immune disorder.
Though it cannot yet be proven, there is good evidence that a diet that
eliminates gluten and or casein may indeed be beneficial. In an unpublished
(1993) manuscript, Waring and Reichelt state "We think that the demonstrated
peptides may be central to the aetiology of the disease. Exorphins not only
increase social isolation in animal models, but may cause CNS inhibition of
maturation." Another observation is equally intriguing: "...because most
bioactive peptides are found in different chain lengths, but with very similar
activity, different peptidase defects would cause similar but not identical
symptom profiles and peptide profiles." They believe that this indicates that
such "effector peptides" would be the "final common path of several clinical
subtypes involving different lengths of peptides. It would also suggest that
other diseases may show autistic symptoms if peptides are involved, as is seen
for coeliac disease."
Gluten and Casein Free Products and Sources or...
How to feed your family without going nuts!
There is a large population in this country of celiac sufferers; they are
experienced in food substitutions and can be a great source of information.
Five organizations that have newsletters and lots of information are:
American Celiac Society: 201-325-8837 (New Jersery)
Celiac Sprue Association/USA: 402-558-0600 (Omaha, Nebraska)
Celiac Sprue Association: 905-567-7195 (Toronto)
Gluten Intolerance Group of North America :206-325-6980 (Seattle)
The Gluten-Free Baker Newsletter is published quarterly, and gives
recipes for sweet and savory baked goods. 361 Cherrywood Drive, Fairborn,
Ohio, 45324-4012
Mail Order Sources:
David's Goodbatter--bread, cake and cookie mixes, 717-872-0652. Great
chocolate cake mix.
The Really Great Food Co.--pancake, gingerbread, cornbread, pizza crust
etc., 516-593-5587
Ener-G Foods Call for a complete list of products. They sell xanthan
gum (essential for giving gluten free baked products the proper texture).
800-331-5222
The Gluten Free Pantry (EXCELLENT)--mixes for breads, cookies and
pancakes, cakes, even bagels, 203-633-3826.
King Arthur Flour tapioca flour, white rice flour, potato starch flour,
xanthan gum. These flours are more expensive than what you can get at your
local health food store. 800-827-6836.
Pamela's Products, Inc.--(Excellent but very expensive) mixes for
pancakes, very good (but expensive) cookies. These can often be found in health
food stores, but they also run a mail-order business. 415-952-4546.
The Zojirushi BBCCS-15 and the Welbilt ABM 150-R bread machines
both have programmable cycles that can be set to bake gluten free breads.
Products Available in Health Food Stores
While the home baked bread recipes in More From The Gluten Free
Gourmet produce loaves far superior to anything that can be purchased,
there are times when you just have to buy a loaf of g-f bread. Ener-G
(white rice, brown rice or tapioca) breads are generally found in the
freezer section of your health food store. It isn't terrific tasting,
and it's expensive, but toasted and "buttered" with soy or canola margarine it
is passable. It also "grills" when filled with Soymage "cheese".
Note: most soy or tofu based cheeses contain casein. Soymage does not, and
is available in "cheddar" and "mozzarella" style.
Fearn's brand brown rice baking mix is available at health food stores,
and even some supermarkets (in the flour section.) This mix makes very good
waffles and pancakes. You can make extra pancakes and waffles to freeze. They
"nuke" very well. For those mornings when you can't get it together, try to
find Van's brand frozen wheat-free waffles and pancakes. They're
expensive but taste great and are wonderful to have in a pinch.
For those avoiding sugar, 100% Pure Vegetable Glycerin is a coconut
based product that makes a good sugar substitute. It is very sweet, very
expensive, a little hard to find and an acceptable sweetener on a
yeast-free diet. Don't get less than 100% pure; lower grades are available for
cosmetic uses, but not for eating! It can be used to sweeten foods, and can
also be used to make a faux maple syrup by adding Frontier brand
maple flavoring (remember, flavored extracts such as maple, almond and
vanilla have alcohol, and thus contain gluten!) Frontier flavorings are
available at many health food stores.
If you are going to make quickbreads, cookies, yeast breads or
muffins you will need a variety of flours. Quinoa is a good
gluten free flour that adds good body to baked goods; if used alone it tastes
rather odd, so use it as part of your flour, not all. Some celiac
groups maintain that quinoa isn't gluten free, but most agree that it is a
safe food. Soy flour is also good when used as part of a recipe's flour
content, adding a slightly nutty taste and a bit of moistness. Brown and
white rice flours are the basis of most gluten free baking. White rice
flour is harder to find at times, since many health food stores have a "no
refined products" policy. Arrowhead Mills makes a very nice white rice
flour; since almost all health food stores (and many supermarkets) carry this
brand, you should be able to get the store manager to order the white rice
variety. Asian grocery stores are also good (and cheap) sources for
anything made from white rice, including flour!
In general, you can't go wrong with the Gluten-free Flour of Bette
Hagman (see references below.) This can be used as a direct substitute for
white flour. The Gluten-free flour proportions are given in the recipe section
below. You should keep some of this mixture on hand at all times, as it works
with nearly any recipe calling for white flour. To give breads the body and
stretchiness you get with wheat, you must add either xanthan gum or
guar gum. It can be hard to find; if your local health food store
doesn't carry it you can order it from King Arthur Flour. Guar gum has a
laxative effect for some people, so xanthan gum is generally preferable. It is
expensive at $20 a jar, but a little goes a long way as you only use a tsp. or
two at a time. Potato Starch Flour is available in health food stores
and shouldn't be confused with Potato flour. The potato starch generally found
in the "Jewish section" of the supermarket works just as well. Baking
powder should be gluten free. Some brands, such as Featherweight, are
specified "gluten free," but others (e.g. Rumford) specify corn starch and are
also acceptable.
Many health food stores stock Rice Pizza Crusts but most frozen pizzas,
even those made with rice crusts and soy cheese, contain casein. Recipes for
breads and pizzas can be found in the Hagman books (see below), and several of
the mail order companies make excellent pizza crust mixes. For variety, use
corn tortillas and the toppings of your choice, to make inexpensive
individual sized tortillas (try topping with browned meat, beans, salsa and
tomato.)
Vary the diet by borrowing from other ethnic cuisines that are rice based. Go
to the library and check out cookbooks on Chinese, Japanese, and Indian
cuisines (did you know most public libraries have a huge cookbook collection?)
Even familiar foods, such as rice, are prepared very differently in different
cultures. Arborio rice makes risotto, a delicious change from plain
rice. Lundberg Farm's RizCous, is a rice based "couscous" that can be
made into any dish where wheat couscous is called for. Check out some books on
Mexican cooking, where corn and rice together with beans can be used to create
nutritious dishes that contain no wheat. Learn to thicken sauces with sweet
rice flour (at Asian groceries) and marinate using wheat free soy sauce
(health food stores.) Learn about the many uses of tofu and the
products made from it. Excellent dried pastas in various shapes are
made from corn, quinoa and rice and can be found at the health food store. Did
you know you can make a delicious crust out of cooked spaghetti? Make
corn spaghetti, boiling only to the al dente state. Add two
beaten eggs, mix it well, and place in a pie pan. Fill with whatever you
like--browned meat with marinara sauce is good--and bake.
Be careful to check all labels. For example, frozen French fries and
"tater tots" generally contain wheat starch. Many prepared foods and sauces
contain wheat, and other foods have gluten. Anything containing "modified
food starch" is suspect. Rice Syrup, a common sweetener,
usually has extracts from barley. Vinegar is permissible
only if it is apple cider, rice or wine vinegar since distilled vinegar
is made from grain. Most medicines that come as syrups contain alcohol,
as do flavoring extracts. Mayonnaise and ketchup usually contain
distilled (i.e. grain) vinegar; Walnut Acres makes a mayo with apple cider
vinegar, and ketchups that use the same can be found at health food stores
(e.g. Westbrae brand.) Many people have asked about spelt and kamut
flours--these are close relatives of wheat and are NOT permissible. Soy
milks make good substitutes for dairy, but most are sweetened with
barley malt or rice syrup that contains barley. A safer choice is
Prosobee baby formula, which is more widely available anyway and
contains calcium. If it just won't "go down" it can be made into chocolate
"milk" with Nestlé's Quick, which is gluten-free. Beware of
"fast food" restaurants: if they fry breaded chicken or fish, be sure that
French fries are not fried in the same oil. Gluten can transfer from a dirty
griddle (for example, eggs cooked immediately after pancakes can be
contaminated.) Also be aware that cross-contamination can take place at home,
when one uses the same utensils in safe and then unsafe foods (e.g. spreading
jam on wheat toast and then using the same knife or jam for g-f
bread) or toasters. Caramel coloring is questionable; if it is an American
made product, the caramel is acceptable. That may or may not be true for
imported foods. Hydrolyzed vegetable protein is used in many products
(labeled HVP). Sometimes it is derived from casein. Pam shortening spray is
gluten free, but some brands, such as Wesson, contain grain alcohol in minute
amounts. Call food manufacturers if you're not sure. Many people use Tofutti
as a non-dairy "ice cream," but be warned, it is not gluten free. Rice
Dream non-dairy frozen desserts are OK, but not those coated with carob or
chocolate. Pringles brand chips used to be O.K., but now are being made with
wheat starch. Some baking yeast is grown on a wheat substrate---use Red Star
or Saf brands when doing gluten-free baking. The Red Star yeast company will
send you a booklet on baking without gluten--call 1-800-4 CELIAC and leave
your name and address.
References and a Few Recipes
The two books written by Bette Hagman, The Gluten Free Gourmet
and More From the Gluten Free Gourmet are published by Holt, and both
are excellent. Each has over 200 gluten free recipes for bread, cookies,
pizza, chicken pot pie, cakes etc. It's also full of advice about adapting
regular recipes and what to use as substitutions. The second book has many
bread recipes especially adapted for use in today's bread machines. If you can
take the time to make bread it won't be punishing to be gluten-free. While the
store bought breads are only barely acceptable, the homemade versions are very
good. Many of the books listed below can be found at a public library, or for
purchase at a health food store that stocks books.
REFERENCES
Allergy Cooking With Ease by Nicolette Dumke and The Allergy
Self-Help Cookbook by Marjorie Hurt Jones and published by Rodale Press
are also useful. Because people on yeast restricted diets are usually advised
to remove gluten as well, The Candida Control Cookbook by Gail Burton
is a very good source of recipes.
The Practical Gluten-Free Cookbook by Arlene Stetzer is available from
Main Street Systems (608) 534-6730.
No-Gluten Children's Cookbook by Pat Cassidy is available for $25.50
from RAE Publications, PO Box 731, Brush Prairie, WA 98606.
This fact sheet has been designed to be a general information resource.
However, it is not intended for use in diagnosis, treatment, or any
other medical application. Questions should be directed to your
personal physician. This information is not warranted and no liability
is assumed by the author or any group for the recommendations,
information, dietary suggestions, menus, and recipes promulgated. Based
upon accepted practices in supplying the source documents, this fact
sheet is accurate and complete. Products mentioned or omitted do not
constitute endorsement.