Background

"Based on reports from caregivers, case studies, and observation of patients with schizophrenia and children with severe behavioral disorders, Dr. FC Dohan hypothesized, in 1960s and 70s, that gluten and dairy foods might worsen these behaviors. He noted that in many cases, a restricted diet could lead to significant improvement or recovery from these disorders. For several years, the biochemical explanation for this phenomenon remained unclear. However, several other studies seemed to bear out this observation, and in 1981, using more advanced laboratory technology, Dr. Karl Reichelt, Director of Clinical Chemistry for the Department of Pediatric Research at the Rikshospitalet (National Hospital) in Oslo, Norway, found and reported abnormal peptides in the urine of schizophrenics and autistics. Peptides are pieces of proteins that are not completely broken down into individual amino acids. Dr. Reichelt has observed that these peptides, which are 4 or 5 or 6 amino acids long, have sequences that match those of opioid peptides (casomorphin and gliadomorphin). The known dietary sources of these opiate peptides are casein (from milk) and gliadin or gluten (from cereal grains). He has since conducted several studies examining this finding, as have several other researchers, including Paul Shattock at the University of Sunderland in England, Dr. Robert Cade at the University of Florida, Gainesville, and Dr. Alan Friedman, of Johnson and Johnson Ortho Clinical Diagnostics. The best evidence for this correlation lies in the thousands of case reports of improvement or recovery of children with autism on this diet. However, responsible physicians who have taken the time to review these studies must agree that there is, indeed, significant scientific evidence to support a trial period of careful elimination of these proteins from the diet of children on the autistic spectrum."
Source: Autism Network For Dietary Intervention

The Case for Anecdotal Evidence

Medical and other professionals say that there is only anecdotal evidence that dietary modification is beneficial for children on the autism spectrum and there are no clinical studies that support dietary modification. May I remind these professionals that some of the major medical advances of our time began with an astute individual being brave enough to put forward a concept that the medical community at the time did not accept. Only many years later were these pioneering individuals recognised for their discovery.
Take for example these historical medical discoveries:

The Discovery of the Stethoscope
René-Théophile-Hyacinthe Laennec (February 17, 1781 – August 13, 1826) was a French physician. He invented the stethoscope in 1816. Laennec is said to have seen schoolchildren playing with long, hollow sticks in the days leading up to his innovation. The children held their ear to one end of the stick while the opposite end was scratched with a pin, the stick transmitted and amplified the scratch. He believed a method to diagnose chest conditions was needed, particularly for stout individuals where direct auscultation to the chest was either inadequate or embarrassing, especially for his female patients. In February 1818, he presented his findings in a talk at the Academie de Medecin, later publishing his findings in 1819.
Not all doctors readily embraced the new stethoscope. Although the New England Journal of Medicine reported the invention of the stethoscope two years later, in 1821, as late as 1885 a professor of medicine stated, "He that hath ears to hear, let him use his ears and not a stethoscope." Even the founder of the American Heart Association, L. A. Connor 1866 - 1950) carried a silk handkerchief with him to place on the wall of the chest for ear auscultation.
Sources: Wikipedia. Canadian Family Physican VOL 39: October 1993; p.2223-2224

Washing of Hands Prior to Childbirth
Ignaz Philipp Semmelweis (July 1, 1818 - August 13, 1865) was the Hungarian physician who demonstrated that puerperal fever (also known as "childbed fever") was contagious and that its incidence could be drastically reduced by enforcing appropriate hand-washing behavior by medical care-givers. He made this discovery in 1847 while working in the Maternity Department of the Vienna Lying-in Hospital. After testing a few hypotheses, he found that the number of cases was drastically reduced if the doctors washed their hands carefully before dealing with a pregnant woman. Risk was especially high if they had been in contact with corpses before they treated the women. The germ theory of disease had not yet been developed at the time. Thus, Semelweiss concluded that some unknown "cadaveric material" caused childbed fever.

He lectured publicly about his results in 1850, however, the reception by the medical community was cold, if not hostile. His observations went against the current scientific opinion of the time, which blamed diseases on an imbalance of the basical "humours" in the body. It was also argued that even if his findings were correct, washing one's hands each time before treating a pregnant woman, as Semmelweis advised, would be too much work. Nor were doctors eager to admit that they had caused so many deaths. Semmelweis spent 14 years developing his ideas and lobbying for their acceptance, culminating in a book he wrote in 1861. The book received poor reviews, and he responded with polemic. In 1865, he suffered a nervous breakdown and was committed to an insane asylum where he soon died from blood poisoning. and he is now recognized as a pioneer of antiseptic policy and prevention of nosocomial disease."
Source: http://inventors.about.com/library/inventors/blantisceptics.htm

Link of Helicobacter Pylori Infection with Gastric Ulcers
Helicobacter pylori was first discovered in the stomachs of patients with gastritis and stomach ulcers in 1982 by Dr. Barry Marshall and Dr. Robin Warren of Perth, Western Australia. At the time the conventional thinking was that no bacterium can live in the human stomach as the stomach produced extensive amounts of acid of strength to the acid found in a car battery. German scientists found spiral-shaped bacteria in the lining of the human stomach as early as 1875, but they were unable to culture it and the results were eventually forgotten. Other researchers also observed bacteria in the stomach over the years. However interest in the bacteria waned when an American study published in 1954 failed to observe the bacteria in 1180 stomach biopsies. In their original paper, Warren and Marshall contended that most stomach ulcers and gastritis were caused by infection by Helicobacter pylori and not by stress or spicy food as had been assumed before. There was skepticism by the medical community that Helicobacter pylori caused gastritis. In an attempt to prove the association Marshall took the radical step of drinking a beaker of H. pylori culture. He became ill with nausea and vomiting several days later. An endoscopy ten days after inoculation revealed signs of gastritis and the presence of H. pylori. These results suggested that H. pylori was the causative agent of gastritis. Marshall and Warren went on to demonstrate that antibiotics are effective in the treatment of many cases of gastritis. Marshall and Warren were finally recognised for their discovery and awarded the 2005 Nobel Prize in Physiology or Medicine. In 1994, the National Institutes of Health (USA) published an opinion stating that most recurrent duodenal and gastric ulcers were caused by H. pylori and recommended that antibiotics be included in the treatment regimen.
Source: Wikepedia.

There are plenty more examples .....

Conversely, how quick are discoveries applauded and marketed if they involve drugs, which are backed by multinational drug companies. These companies have the monetary muscle, to push through on numerous occasions questionable studies through the FDA, lobby politicians and use questionable means to market to medical professionals.

Therefore who is going to put their hand up to do the double blind, placebo controlled studies, let alone get the funding, and finally to get a reputable journal to publish the results? (See Drugs in Medicine). Did I mention that there would be no  financial gain from doing such a study? Why has so much money been poured into genetic testing? A genetic abnormality = potential for a drug = heaps of money. So parents are told by professionals that (although anecdotally 50 to 80% of children respond to diet) dietary modification is quackery and dangerous. In 50 years time I wonder who will be seen as the quacks and who will be the heroes? The medical professionals or the parents following their instincts, and are courageous to go against the trend to help their children?

I am also reminded that it was not that long ago that autistic children were regarded as the product of "refrigerator mother's" by psychiatrists and psychologists. Who would dare to stand up in public today and make the same claims?

I will make one thing clear - not all children respond to dietary modification, nor is it advocated as the primary treatment. Autism needs a multidisciplinary approach to achieve the best results. Also initial guidance by an experienced practitioner is highly recommended to ensure it is correctly implemented.

Below are sections relating to studies looking at dietary intervention and parent surveys that are the source of the anecdotal evidence being ignored by many sections of the medical community. In fairness there are some practitioners that are coming on board (see interview with Professor Kerryn Phelps on Sunrise), acknowledging that there is sufficient anecdotal evidence and dietary modification is a low risk strategy.

Double blind controlled studies
Medical practitioners require double blind and placebo controlled studies to prove the effectiveness of a drug or treatment. A double blind study requires that neither the researchers collecting the data nor the parents or participants know whether, in this case, a child is on their regular diet or a gluten and casein free diet. Therefore to be able to do the study, food technologists need to replicate a child's normal diet and reproduce the same foods, except that they do not contain gluten or casein. Knowing that many children are also sensitive to salicylates, amines and or glutamates, how can this be achieved without having to resort to artificial colours and flavour enhancers that children are known to also react to?
One such study has been done (see below), and frankly I am amazed that the children in the study actually did so well!

The Dietary Studies

On May 29 –30, 2008, a multidisciplinary panel of 28 experts convened in Boston, Massachusetts, to review and discuss gastrointestinal aspects of ASDs. They published a consensus report with 23 recommendations.

Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report.
Pediatrics 2010;125;S1-S18

Abstract
Autism spectrum disorders (ASDs) are common and clinically heterogeneous neurodevelopmental disorders. Gastrointestinal disorders and associated symptoms are commonly reported in individuals with ASDs, but key issues such as the prevalence and best treatment of these conditions are incompletely understood. A central difficulty in recognizing and characterizing gastrointestinal dysfunction with ASDs is the communication difficulties experienced by many affected individuals. A multidisciplinary panel reviewed the medical literature with the aim of generating evidence-based recommendations for diagnostic evaluation and management of gastrointestinal problems in this patient population. The panel concluded that evidence-based recommendations are not yet available. The consensus expert opinion of the panel was that individuals with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs. Care providers should be aware that problem behavior in patients with ASDs may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders. For these patients, integration of behavioral and medical care may be most beneficial. Priorities for future research are identified to advance our understanding and management of gastrointestinal disorders in persons with ASDs.

Comment
There were 23 Consensus Statements contained in the report. Five statements pertaining to diet were included and listed below.

Statement 9
Pediatricians and other primary care providers should be alert to potential nutritional problems in patients with ASDs. Evaluation by a nutritionist who is familiar with nutrition support for individuals with ASDs is recommended if caregivers raise concern about the patient’s diet or if the patient exhibits selectivity of intake or is on a restricted diet.

Statement 11
Anecdotal reports have suggested that there may be a subgroup of individuals with ASDs who respond to dietary intervention. Additional data are needed before pediatricians and other professionals can recommend specific dietary modifications.

Statement 12
Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined glutenfree, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

Statement 13
For patients with ASDs, a detailed history should be obtained to identify potential associations between allergen exposure and gastrointestinal and/or behavioral symptoms.

Statement 15
For patients with ASDs, a detailed history (including personal history of allergic disease, dietary history, and
family history) and physical examination should be performed to accurately identify potential comorbid allergic disease.

Comment
The recommendations on dietary modification are based on one study which was a proper scientifically conducted double blind study, which the committee could accept for consideration. The study abstract is reproduced below.

The Gluten-Free, Casein-Free Diet In Autism: Results of A Preliminary Double Blind Clinical Trial
Journal of Autism and Developmental Disorders, Vol. 36, No. 3, April 2006

Abstract
This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2–16 years with autism spectrum disorder. Data on autistic symptoms and urinary peptide levels were collected in the subjects’ homes over the 12 weeks that they were on the diet. Group data indicated no statistically significant findings even though several parents reported improvement in their children. Although preliminary, this study demonstrates how a controlled clinical trial of the GFCF diet can be conducted, and suggests directions for future research.

Comment:
If you read the full study, there are some very interesting points that quite interestingly did not have more emphasis in the abstract, which is what most people would only have access to. Included in the report are these two comments:

“....parents of seven children reported that  there were marked improvements in their child’s language, decreased hyperactivity and decreased tantrums. Further, parents of nine children decided to keep their children on the GFCF diet even though there was no empirical support  for continuing.”

Comment: As a medical Scientist I find it amazing that more than half of the parents in the study group decided "to keep their children on a GFCF diet". Anyone who has a child on the spectrum knows that, as parents, they are under more stress than those with neurotypical children. Therefore it is amazing that 9 out of 13 parents (69%) decided to keep their children on a GFCF diet. Why would busy, stressed parents make the additional effort to take on a GFCF diet if they did not feel it made a difference? The 69% of parents in this study that continued with the GFCF diet is in line with the anecdotal evidence from parent surveys. And further ....

“Also interesting were the unsolicited reports of one teacher and one respite worker who claimed to observe language and behaviour improvements in two of the children.”

Comment: So apart from the parents, there were two other independent reports of improvement in two of the children. I am unaware of any other intervention that can produce such rapid improvements in behaviour, speech or gastrointestinal symptoms in our children, within 6 weeks!

Other Dietary Studies

There are more studies being published in favour of dietary intervention in peer reviewed journals in recent years. If your pediatrician, psychiatrist, psychologist, nutritionist or other medical professional is not aware of these studies, then either refer them to this website or print off the list of studies for them to review. Of note are journals of nutrition and dietetics that are least supportive of dietary modification in autism. The Royal Prince Alfred Hospital - Allergy Elimination Clinic appears to be going against this trend. See below.

There is increasing interest in the use of gluten- and casein-free diets for children with autism spectrum disorders (ASDs). We report results from a two-stage, 24-month, randomised, controlled trial incorporating an adaptive 'catch-up' design and interim analysis. Stage 1 of the trial saw 72 Danish children (aged 4 years to 10 years 11 months) assigned to diet (A) or non-diet (B) groups by stratified randomisation. Autism Diagnostic Observation Schedule (ADOS) and the Gilliam Autism Rating Scale (GARS) were used to assess core autism behaviours, Vineland Adaptive Behaviour Scales (VABS) to ascertain developmental level, and Attention-Deficit Hyperactivity Disorder - IV scale (ADHD-IV) to determine inattention and hyperactivity. Participants were tested at baseline, 8, and 12 months. Based on per protocol repeated measures analysis, data for 26 diet children and 29 controls were available at 12 months. At this point, there was a significant improvement to mean diet group scores (time*treatment interaction) on sub-domains of ADOS, GARS and ADHD-IV measures. Surpassing of predefined statistical thresholds as evidence of improvement in group A at 12 months sanctioned the re-assignment of group B participants to active dietary treatment. Stage 2 data for 18 group A and 17 group B participants were available at 24 months. Multiple scenario analysis based on inter- and intra-group comparisons showed some evidence of sustained clinical group improvements although possibly indicative of a plateau effect for intervention. Our results suggest that dietary intervention may positively affect developmental outcome for some children diagnosed with ASD. In the absence of a placebo condition to the current investigation, we are, however, unable to disqualify potential effects derived from intervention outside of dietary changes. Further studies are required to ascertain potential best- and non-responders to intervention.

Genuis SJ, Bouchard TP. Celiac disease presenting as autism. J Child Neurol. 2010 Jan;25(1):114-9. Epub 2009 Jun 29.

Abstract

Gluten-restricted diets have become increasingly popular among parents seeking treatment for children diagnosed with autism. Some of the reported response to celiac diets in children with autism may be related to amelioration of nutritional deficiency resulting from undiagnosed gluten sensitivity and consequent malabsorption. A case is presented of a 5-year-old boy diagnosed with severe autism at a specialty clinic for autistic spectrum disorders. After initial investigation suggested underlying celiac disease and varied nutrient deficiencies, a gluten-free diet was instituted along with dietary and supplemental measures to secure nutritional sufficiency. The patient's gastrointestinal symptoms rapidly resolved, and signs and symptoms suggestive of autism progressively abated. This case is an example of a common malabsorption syndrome associated with central nervous system dysfunction and suggests that in some contexts, nutritional deficiency may be a determinant of developmental delay. It is recommended that all children with neurodevelopmental problems be assessed for nutritional deficiency and malabsorption syndromes.

BACKGROUND: Anecdotal reports and parent surveys have shown evidence that dietary interventions have had some success in ameliorating the symptoms of autism.

BACKGROUND: It has been suggested that peptides from gluten and casein may have a role in the origins of autism and that the physiology and psychology of autism might be explained by excessive opioid activity linked to these peptides. Research has reported abnormal levels of peptides in the urine and cerebrospinal fluid of people with autism.

OBJECTIVES: To determine the efficacy of gluten and/or casein free diets as an intervention to improve behaviour, cognitive and social functioning in individuals with autism.

Comment: Additional observations on the content of this study are discussed above. See: Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report

Abstract

Impaired social interaction, communication and imaginative skills characterize autistic syndromes. In these syndromes urinary peptide abnormalities, derived from gluten, gliadin, and casein, are reported. They reflect processes with opioid effect. The aim of this single blind study was to evaluate effect of gluten and casein-free diet for children with autistic syndromes and urinary peptide abnormalities. A randomly selected diet and control group with 10 children in each group participated. Observations and tests were done before and after a period of 1 year. The development for the group of children on diet was significantly better than for the controls.

Comment
Each year that this survey is updated, the percentage of parents that see beneficial effects in their children continues to increase. This may be that newer parents have the benefit of learning from experienced parents that have implemented the diet and that the range of gluten free products are increasing and becoming more widely available.

Comment
What is rather amazing with this survey is the percentage of parents that saw a beneficial effect within one week of implementing the diet. Overall if we look at the benefits for more than a month, 82.1% of parents found some beneficial effect for their child when gluten/casein/soy are removed from the diet. This is anecdotal evidence that cannot be ignored.


Royal Prince Alfred Hospital - Allergy Elimination Clinic. Student Studies

A Whole New World: Diet Modification in Children with ASD. An in-depth qualitative study

Dietary Modification in the Management of Autistic Spectrum Disorders (ASD).
A non-randomised Intervention Study.

Abstract