NotMilk - Autism & ADD




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"The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet and in the cause and prevention of disease."
- Thomas Edison


Dr. Knapp, by the way, also teaches nutrition at nearby Volunteer State Community College. and he has a good reason to believe in the nutritional-preventive approach to dentistry. "I started getting into this about two years ago. My son was hyperactive. He had rampant tooth decay and here his father was a dentist! We took a hair analysis and found that his sodium was just out-of-this-world high, and a lot of other things were high. So we got off the salt, got off the lunch meat, got off the preservatives. We got off the junk food and the sugar. But he still had cavities. Then we suspected he might be allergic to homogenized milk. Got him off the milk and he hasn't had a cavity since. and he's not hyperactive anymore. He went from just barely passing kindergarten to making A's and B's now." -

Cohen: Smith: Bradstreet: Beta-casomorphin-7 from milk causes autism and ADHD 1.7.01

    Date:    Sun, 07 Jan 2001 05:04:34 -0500
    From:    Robert Cohen <>

Dear Friends,


A friend recently sent me an article that appeared in a Manchester, New Hampshire newspaper. (Derry News, December 22, 2000, p 19)

Jill McIntosh (603-437-3375) had found a cure for her son's autism:  Eliminating all milk and dairy products and wheat from the child's diet.  We recently spoke, and she's allowed me to include her phone number in this mailing!

Jill links autism to a "milk allergy."


Florida researcher, Robert Cade, M.D., and his colleagues have identified a milk protein, casomorphin, as the probable cause of attention deficit disorder and autism.  They found Beta-casomorphin-7 in high concentrations in the blood and urine of patients with either schizophrenia or autism. (AUTISM, 1999, 3)

Eighty percent of cow's milk protein is casein.  It has been documented that casein breaks down in the stomach to produce a peptide casomorphine, an opiate.

Another researcher observed that casomorphin aggravated the symptoms of autism. (Panksepp, J.  Trends in Neuroscience, 1979, 2)

A third scientist produced evidence of elevated levels of endorphin-like substances in the cerebro-spinal fluid of people with autism. (Gillberg, C. (1988)  Aspects of Autism: Biological Research Gaskell:London, pp. 31-37)

The Autism Research Unit, School of Health Sciences includes the following information on their website:

"The quantities of these compounds, as found in the urine, are much too large to be of central nervous system  origin. The quantities are such that they can only have been derived from the incomplete breakdown of certain foods."


Search the Internet and you'll find many anecdotal stories from parents blaming their children's autism on milk and dairy products.  One such story appeared  in the February, 2000 issue of "Parent's Magazine."

For children with autism, milk may very well be the major factor.  One out of five American children have been diagnosed with attention deficit disorder.  One out of five American children take Ritalin.  An alternative therapy?  NOTMILK!

For Jill, NOTMILK has made all the difference.

Robert Cohen
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Learn about MILK from A to Z:
Autism Protocol      Stephen Smith, M.D.  Dec 17  2000

Casomorphine is a derivative of casein, which is a milk protein. Casomorphine has been found in the urine in several different conditions including ADD and Autism. Dr. Karl Reichelt has even found this in schizophrenia. Dr. Reichelt has also described the presence of other food-derived polypeptides in the urine of children suffering from ADD and Autism. Paul Shattock has also described these peptides in the urine of autistic children. Some of these polypeptides are biologically active with actions similar to endorphins such as casomorphine. We also report Des-Tyr casomorphine, another fragment of casein. Casomorphines are also an indication of increased intestinal permeability. If casomorphine is elevated it may be beneficial to remove milk products from the diet. Removal of milk products has been associated with improvement of behavior.

Stephen L. Smith, M.D.
Business Address:
310 Torbet Richland, WA 99352 (509) 946-7646
University of Washington School of Medicine Seattle, Washington (M.D. Degree 1980)
Whitman College Walla Walla, WA (B.A. Chemistry 1976)
Post Graduate Training:
Sacred Heart Medical Center flexible (June 1981 to July 1982)
Completed American Academy of Otolaryngolic Allergy
educational requirements for board certification in ENT Allergy in November 1992
American Academy of Environmental Medicine training in environmental medicine 1994 and 1995.
American College for the Advancement of Medicine training program in chelation therapy.
American College for the Advancement of Medicine training program in anti-aging medicine 1997
American Academy of Antiaging Medicine training in anti-aging medicine 1996
Basic and Advanced training in Neural therapy 1996.
Basic and advanced training in NAET allergy elimination technique 1996.
Darkfield microscopy training 1998.
Professional Experience:
August of 1990 Opened Physicians Medical Center a branch of Physicians Immediate Care Center providing specialized care in allergy and laser surgery. April 1983 to present:
Owner-operator of Physicians Immediate Care Center in Richland, WA., an ambulatory care center. Practice consists of general practice and allergy.
Federal Aviation Administration Medical examiner.
January 1984 opened Physicians Immediate Care in Boise, ID. this ambulatory care center was merged into a company called MedCare, Inc. in November of 1985.
November 1982 to October 1987: Co-founder and owner of Nova Systems, Inc. Nova Systems was a computer and software company specializing in medical, dental, and hospital software.
Nova Systems, Inc. was acquired by Wismer Martin, Inc.
July 1981 to December 1982: Spokane Minor Emergency Centers as ambulatory care center staff physician.
Professional Affiliations and Organizations:
Benton-Franklin Medical Society Member
American Academy of Environmental Medicine
American EPD Society
American College for the Advancement of Medicine
Tri Cities Vocational Center, Advisory Board
Tri Cities Prep, (A Catholic high school) Board Member
American Society for Lasers in Medicine and Surgery
Flying, scuba diving, fly fishing, amateur radio, and snow skiing.
Immediate Care and Medical Centers
1516 Jadwin Richland WA 99352
(509) 946-1695 / 1-800-669-1695 / (509)946-7666 Fax
************************************************* and the Angiotensins

AAL Reference Laboratories, Inc. is pleased to announce the availability of Urinary Polypeptides with Indolyl-acryloylglycine (IAG) and Casomorphine as described by both Paul Shattock and Karl Reichelt. Paul Shattock, who is a consultant with AAL Reference Laboratories, helped AAL Reference Laboratories to develop these tests, and we are currently working in conjunction with Karl Reichelt. Some of the proceeds of the Urinary Polypeptides and IAG go to the Autism Research Unit at the University of Sunderland to support the research work of Paul Shattock.

AAL Reference Laboratories, Inc
1715 E. Wilshire #714
Santa Ana, CA 92705
fax 714-543-2034   If you have any questions, please feel free to
e-mail us at or call us at 800-522-2611.
Glueten Free Casein Free Diet
Judy DeHart, Editor
GFCF    Begin using the GFCF Diet
Explanation of Diet
Printable GFCF Food List
Acceptable/Unacceptable Ingredients
Lab Information for Testing
Frequently Asked Questions
GFCF Cookbooks/Conversion Table
Manufacturer's Toll Free numbers
Scientific Nutrition Explanation
List of Defeat Autism Now! (DAN!) Doctors
GFCF Diet Support Group
started Dec 15 1998   1690 members This list is unmoderated and unrestricted.
The principle aim of this list is to provide a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children's diets. We hope that the discussions will include practical information and tips on following a GFCF(etc) diet; scientific research and opinion; the latest developments in understanding GFCF(etc) diet-related health problems; your personal stories and experiences with relation to GFCF(etc) problems; information on what food is GFCF(etc) and what is not; tips on how to eat out of the house; recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins, minerals, herbs and other supplements may be appropriate for a child with autism, how to cope with difficult diet demands, plus support for parents. Appropriate topics for discussion on the list include anything at all related to diet and autism spectrum disorders-including GFCF but also yeast, nitrates/nitrites, dyes, vitamins, minerals,supplements, dealing with teachers, friends, schools, outings, siblings, testing, etc...Please keep general off topic  information off the list as much as possible and clearly mark off-topic posts. For immediate help and answers to your questions, visit the GFCF Diet website at
The Good News Doctor and The International Autism Research Center
"The Good News Doctor Foundation"
1663 Georgia St. N.E.   Palm Bay, Florida 32907       321-953-0278
Overview of Autism/PDD:
The Clinical Evaluation and  Research Treatment Options©
Jeff Bradstreet, M.D., FAAFP [long, comprehensive review, with many abstracts of published research]   May 2000
While I do not have a complete answer, medical research is certainly giving us some significant clues. The right genetic mix with a potent immune insult, injury or event, seems to be the setup for autism to develop. The State of California has been tracking autism for years and the incidence has increased by 200-400% (depending on who gets included in the data) in the past 12 years. Within the next few years I believe the immunological etiology (what causes it) of autism will be well documented. Here are a few of the major clues:

1.)  Many autistic children have a history of either frequent early ear infections or milk/formula intolerance. The frequent ear infections may affect sound input during critical phases in brain development. This points to a weakened immune system and should be considered for evaluation before proceeding with routine vaccinations. These infections combined with a weak immune system, may also influence the immune system in adverse ways, making vaccine reactions and autoimmunity more likely. They may further be caused by immune changes induced by vaccines. (Well documented in the literature). The problems with infant formulas point to a casein intolerance from an early age.

2.) In young children, autism is often minimized or greatly helped by removal of casein and gluten: (Shattock, Reichelt, Cade, Friedman, see research/medical abstracts attached.) Gluten and casein have immune, as well as neurotransmitter impacts. Gluten and casein therefore have the ability to cause immune dysregulation and neurotransmitter imbalance. (Fudenberg and Cade, see research/medical abstracts attached.) Since gluten (grains like wheat, oat, barley, rye and spelt) and dairy casein are such an important part of the diet of most people, changing is a challenging decision for most of us. Here are some abstracts, from a diverse group of researchers, on the effects of milk-derived opioids known as casomorphins on the immune system and brain, so you might be more informed on the possible effects these have on your child. These are merely some examples of one dietary opioid. Dr. Cade's group at UF recently published their findings on rats injected with beta casomorphin. See the August ARI Newsletter Vol.13.No.2, for a good review of the subject. In effect, the research showed that casomorphin caused the rats to develop autistic-like behaviors. This is perhaps the best data currently to encourage you to remove gluten and casein from your child's diet. There are several good ways to get info on this. The Autism Network for Dietary Intervention (ANDI) is a good starting place. I recommend you get Lisa Lewis' book Special Diets for Special Kids, which we keep in supply. We see increased opioids in the urine almost 100% of the time in autism, using either Dr. Shaw's lab in Kanasa or Dr Reichelt's lab in Norway. They are identical to casomorphin and gliadomorphin and go away after dietary elimination (it may take 1 year to normalize). We therefore assume a dietary source for these opioids. This understanding has been confirmed in numerous medical articles.

Click here to reference ABSTRACTS. See:
Type I (insulin-dependent) diabetes mellitus and cow milk: casein variant consumption
Effect of beta-casomorphin on neonatal sleep in rats
Linear and cyclic beta-casomorphin analogues with high analgesic activity
Beta-Casomorphin-immunoreactivity in the brain stem of the human infant
[The behavioral effects of beta-casomorphin-7 and its des-Tyr analogs]
Casein-derived peptides can modulate the production of 5-hydroxyeicosatetraenoic acids in human neutrophils
Stimulation of human peripheral blood lymphocytes by bioactive peptides derived from bovine milk proteins
Nutrient intake is modulated by peripheral peptide administration
Inhibition of small intestinal motility by casein: a role of beta casomorphins?
Milk protein-derived opioid receptor ligands
Beta-Casomorphin causes hypoalgesia in 10-day-old rats: evidence for central mediation

2)  Avoid all excitotoxins: MSG, glutamate, glutamine, caseinates, hydrolyzed vegetable protein, natural  flavorings, texturized vegetable protein, Nutrasweet*, aspartame, soups (unless it is specified that they contain no MSG). Also be very cautious with all prepared or restaurant food. Assume the worst. Go for plain food, e.g.: grilled fish or chicken, plain rice, steamed vegetables at restaurants. Use MSM to help detoxify your child's system (see supplement section).

You may contact us, frequently if need be, at The International Autism Research Center and you should also subscribe  to Dr. Rimland's monthly newsletter. It is one efficient way to stay current - they do all the work of researching the  world's literature.
Get a copy of the DAN! (Defeat Autism Now!) Protocol
from them as well. Their address is 4182  Adams Avenue
San Diego, CA, 92116.  

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We Cured Our Son's Autism

By Karyn Seroussi
Copyright © 2000 Karyn Seroussi

When the doctors said our son would be severely disabled for life, we set out to prove them wrong.

When the psychologist examining our 18-month-old son told me that she thought Miles had autism, my heart began to pound. I didn't know exactly what the word meant, but I knew it was bad. Wasn't autism some type of mental illness -- perhaps juvenile schizophrenia? Even worse, I vaguely remembered hearing that this disorder was caused by emotional trauma during childhood. In an instant, every illusion of safety in my world seemed to vanish.

Our pediatrician had referred us to the psychologist in August 1995 because Miles didn't seem to understand anything we said. He'd developed perfectly normally until he was 15 months old, but then he stopped saying the words he'd learned -- cow, cat, dance -- and started disappearing into himself. We figured his chronic ear infections were responsible for his silence, but within three months, he was truly in his own world.

Suddenly, our happy little boy hardly seemed to recognize us or his 3-year-old sister. Miles wouldn't make eye contact or even try to communicate by pointing or gesturing. His behavior became increasingly strange: He'd drag his head across the floor, walk on his toes (very common in autistic children), make odd gurgling sounds, and spend long periods of time repeating an action, such as opening and closing doors or filling and emptying a cup of sand in the sandbox. He often screamed inconsolably, refusing to be held or comforted. And he developed chronic diarrhea.

As I later learned, autism -- or autistic spectrum disorder, as doctors now call it -- is not a mental illness. It is a developmental disability thought to be caused by an anomaly in the brain. The National Institutes of Health estimates that as many as 1 in 500 children are affected. But according to several recent studies, the incidence is rapidly rising: In Florida, for example, the number of autistic children has increased nearly 600 percent in the last ten years. Nevertheless, even though it is more common than Down syndrome, autism remains one of the least understood developmental disorders.

We were told that Miles would almost definitely grow up to be severely impaired. He would never be able to make friends, have a meaningful conversation, learn in a regular classroom without special help, or live independently. We could only hope that with behavioral therapy, we might be able to teach him some of the social skills he'd never grasp on his own.

I had always thought that the worst thing that could happen to anyone was to lose a child. Now it was happening to me but in a perverse, inexplicable way. Instead of condolences, I got uncomfortable glances, inappropriately cheerful reassurances, and the sense that some of my friends didn't want to return my calls.

After Miles' initial diagnosis, I spent hours in the library, searching for the reason he'd changed so dramatically. Then I came across a book that mentioned an autistic child whose mother believed that his symptoms had been caused by a "cerebral allergy" to milk. I'd never heard of this, but the thought lingered in my mind because Miles drank an inordinate amount of milk -- at least half a gallon a day.

I also remembered that a few months earlier, my mother had read that many kids with chronic ear infections are allergic to milk and wheat. "You should take Miles off those foods and see if his ears clear up," she said. "Milk, cheese, pasta, and Cheerios are the only foods he'll eat," I insisted. "If I took them away, he'd starve."

Then I realized that Miles' ear infections had begun when he was 11 months old, just after we had switched him from soy formula to cow's milk. He'd been on soy formula because my family was prone to allergies, and I'd read that soy might be better for him. I had breast-fed until he was 3 months old, but he didn't tolerate breast milk very well -- possibly because I was drinking lots of milk. There was nothing to lose, so I decided to eliminate all the dairy products from his diet.

What happened next was nothing short of miraculous. Miles stopped screaming, he didn't spend as much time repeating actions, and by the end of the first week, he pulled on my hand when he wanted to go downstairs. For the first time in months, he let his sister hold his hands to sing "Ring Around a Rosy."

Two weeks later, a month after we'd seen the psychologist, my husband and I kept our appointment with a well-known developmental pediatrician to confirm the diagnosis of autism. Dr. Susan Hyman gave Miles a variety of tests and asked a lot of questions. We described the changes in his behavior since he'd stopped eating dairy products. Finally, Dr. Hyman looked at us sadly. "I'm sorry," the specialist said. "Your son is autistic. I admit the milk allergy issue is interesting, but I just don't think it could be responsible for Miles' autism or his recent improvement."

We were terribly disheartened, but as each day passed, Miles continued to get better. A week later, when I pulled him up to sit on my lap, we made eye contact and he smiled. I started to cry -- at last he seemed to know who I was. He had been oblivious to his sister, but now he watched her play and even got angry when she took things away from him. Miles slept more soundly, but his diarrhea persisted. Although he wasn't even 2 yet, we put him in a special-ed nursery school three mornings a week and started an intensive one-on-one behavioral and language program that Dr. Hyman approved of.

I'm a natural skeptic and my husband is a research scientist, so we decided to test the hypothesis that milk affected Miles' behavior. We gave him a couple of glasses one morning, and by the end of the day, he was walking on his toes, dragging his forehead across the floor, making strange sounds, and exhibiting the other bizarre behaviors we had almost forgotten. A few weeks later, the behaviors briefly returned, and we found out that Miles had eaten some cheese at nursery school. We became completely convinced that dairy products were somehow related to his autism.

I wanted Dr. Hyman to see how well Miles was doing, so I sent her a video of him playing with his father and sister. She called right away. "I'm simply floored," she told me. "Miles has improved remarkably. Karyn, if I hadn't diagnosed him myself, I wouldn't have believed that he was the same child."

I had to find out whether other kids had had similar experiences. I bought a modem for my -- not standard in 1995 -- and discovered an autism support group on the Internet. A bit embarrassed, I asked, "Could my child's autism be related to milk?"

The response was overwhelming. Where had I been? Didn't I know about Karl Reichelt in Norway? Didn't I know about Paul Shattock in England? These researchers had preliminary evidence to validate what parents had been reporting for almost 20 years: Dairy products exacerbated the symptoms of autism.

My husband, who has a Ph.D. in chemistry, got copies of the journal articles that the parents had mentioned on-line and went through them all carefully. As he explained it to me, it was theorized that a subtype of children with autism break down milk protein (casein) into peptides that affect the brain in the same way that hallucinogenic drugs do. A handful of scientists, some of whom were parents of kids with autism, had discovered compounds containing opiates -- a class of substances including opium and heroin -- in the urine of autistic children. The researchers theorized that either these children were missing an enzyme that normally breaks down the peptides into a digestible form, or the peptides were somehow leaking into the bloodstream before they could be digested.

In a burst of excitement, I realized how much sense this made. It explained why Miles developed normally for his first year, when he drank only soy formula. It would also explain why he had later craved milk: Opiates are highly addictive. What's more, the odd behavior of autistic children has often been compared to that of someone hallucinating on LSD.

My husband also told me that the other type of protein being broken down into a toxic form was gluten -- found in wheat, oats, rye, and barley, and commonly added to thousands of packaged foods. The theory would have sounded farfetched to my scientific husband if he hadn't seen the dramatic changes in Miles himself and remembered how Miles had self-limited his diet to foods containing wheat and dairy. As far as I was concerned, there was no question that the gluten in his diet would have to go. Busy as I was, I would learn to cook gluten-free meals. People with celiac disease are also gluten-intolerant, and I spent hours on-line gathering information.

Within 48 hours of being gluten-free, 22-month-old Miles had his first solid stool, and his balance and coordination noticeably improved. A month or two later, he started speaking -- "zawaff" for giraffe, for example, and "ayashoo" for elephant. He still didn't call me Mommy, but he had a special smile for me when I picked him up from nursery school. However, Miles' local doctors -- his pediatrician, neurologist, geneticist, and gastroenterologist -- still scoffed at the connection between autism and diet. Even though dietary intervention was a safe, noninvasive approach to treating autism, until large controlled studies could prove that it worked, most of the medical community would have nothing to do with it.

So my husband and I decided to become experts ourselves. We began attending autism conferences and phoning and e-mailing the European researchers. I also organized a support group for other parents of autistic children in my community. Although some parents weren't interested in exploring dietary intervention at first, they often changed their mind after they met Miles. Not every child with autism responded to the diet, but eventually there were about 50 local families whose children were gluten- and casein-free with exciting results. And judging by the number of people on Internet support lists, there were thousands of children around the world responding well to this diet.

Fortunately, we found a new local pediatrician who was very supportive, and Miles was doing so well that I nearly sprang out of bed each morning to see the changes in him. One day, when Miles was 2 1/2, he held up a toy dinosaur for me to see. "Wook, Mommy, issa Tywannosauwus Wex!" Astonished, I held out my trembling hands. "You called me Mommy!" I said. He smiled and gave me a long hug.

By the time Miles turned 3, all his doctors agreed that his autism had been completely cured. He tested at eight months above his age level in social, language, self-help, and motor skills, and he entered a regular preschool with no special-ed supports. His teacher told me that he was one of the most delightful, verbal, participatory children in the class. Today, at almost 6, Miles is among the most popular children in his first-grade class. He's reading at a fourth-grade level, has good friends, and recently acted out his part in the class play with flair. He is deeply attached to his older sister, and they spend hours engaged in the type of imaginative play that is never seen in kids with autism.
My worst fears were never realized. We are terribly lucky.

But I imagined all the other parents who might not be fortunate enough to learn about the diet. So in 1997, I started a newsletter and international support organization called Autism Network for Dietary Intervention (ANDI), along with another parent, Lisa Lewis, author of Special Diets for Special Kids (Future Horizons, 1998). We've gotten hundreds of letters and e-mails from parents worldwide whose kids use the diet successfully. Although it's best to have professional guidance when implementing the diet, sadly, most doctors are still skeptical.

As I continue to study the emerging research, it has become increasingly clear to me that autism is a disorder related to the immune system. Most autistic children I know have several food allergies in addition to milk and wheat, and nearly all the parents in our group have or had at least one immune-related problem: thyroid disease, Crohn's disease, celiac disease, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, or allergies. Autistic children are probably genetically predisposed to immune-system abnormalities, but what triggers the actual disease?

Many of the parents swore that their child's autistic behavior began at 15 months, shortly after the child received the MMR (measles, mumps, rubella) vaccine. When I examined such evidence as photos and videotapes to see exactly when Miles started to lose his language and social skills, I had to admit that it had coincided with his MMR -- after which he had gone to the emergency room with a temperature of 106°F and febrile seizures. Recently, a small study was published by British researcher Andrew Wakefield, M.D., linking the measles portion of the vaccine to damage in the small intestine -- which might help explain the mechanism by which the hallucinogenic peptides leak into the bloodstream. If the MMR vaccine is indeed found to play a role in triggering autism, we must find out whether some children are at higher risk and therefore should not be vaccinated or should be vaccinated at a later age.

Another new development is giving us hope: Researchers at Johnson and Johnson's Ortho Clinical Diagnostics division -- my husband among them -- are now studying the abnormal presence of peptides in the urine of autistic children. My hope is that eventually a routine diagnostic test will be developed to identify children with autism at a young age and that when some types of autism are recognized as a metabolic disorder, the gluten and dairy-free diet will move from the realm of alternative medicine into the mainstream.

The word autism, which once meant so little to me, has changed my life profoundly. It came to my house like a monstrous, uninvited guest but eventually brought its own gifts. I've felt twice blessed -- once by the amazing good fortune of reclaiming my child and again by being able to help other autistic children who had been written off by their doctors and mourned by their parents.

Adapted from the book
Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi.

For more info, contact:

The Autism Network for Dietary Intervention (ANDI)
Fax 609-737-8453
Publishes ANDI News, a newsletter containing recipes, research updates, and articles by parents and physicians.

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