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Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero
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Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Mar 30, 2015

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Page 1: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Elimination DietsThe Gluten and Casein Free Diet

Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero

Page 2: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

What is a gluten and casein free (GFCF) diet? Most popular 8 in 10 children with autism may benefit Consists of eliminating the intake of the

naturally-occurring proteins gluten (found naturally in wheat, barley, and rye) and casein (found in milk).

Page 3: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

The Background… In the 1960s, Dr. Curtis Dohan proposed that an

inherited defect interacting with an environmental trigger of gluten precipitated schizophrenia in some individuals.

The possible relationship between gluten, casein, and autism was first articulated by Karl Reichelt, M.D. in 1991.

Page 4: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Who is Karl Reichelt? A pediatric medical doctor. Director of Clinical Chemistry for the

Department of Pediatric Research at a hospital in Oslo, Norway

Conducts research on the impact of gluten and casein intolerance in individuals with developmental delays.

Page 5: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

The “Leaky Gut” Theory… The theory is that many if not all children with autism

have a damaged intestine/gut. This "leaky gut" allows some food proteins to pass through into the bloodstream only partially digested, particularly gluten and casein. These proteins form peptides which have an opiate-like affect. They can bind to the receptors and cause harmful effects in the brain just like a regular opiate. Opiates can either cause or magnify autistic symptoms.

Page 6: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

How does a GFCF diet improve the symptoms of autism? The opiates travel to the brain, where they

induce a state similar to that of a drug-induced "high.” When wheat and casein are removed from the diet, the child no longer experiences the high, and his or her behaviors and abilities radically improve.

Page 7: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Who is a good candidate for this diet?Does the child: have a "blotchy" complexion over his entire/part of body? seem to be "healthier" and perform better in the summertime? have sessions of "shakiness" (NOT of a seizural nature) in the

hands, etc. when hungry or immediately after eating? need to eat something sweet before he will eat anything else? lick salt off chips, crackers, pretzels, etc.? consume large quantities of liquids over the course of the day? have an irregular stool pattern? have a history of illness in infancy and/or early childhood that

occurs in "cycles?" For example, vomiting, diarrhea or upper respiratory infections, colds, etc. every 3, 6, 8 weeks?

Page 8: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

…continued have a constantly running nose? urinate more at night (quantitatively) than for the same length of time during

the day? suffer from numerous ear and/or sinus infections? have a history of prematurity, postmaturity, hyper-bilirubinemia, or other

neonatal traumas? have psoriasis or eczema, or other "unexplained" rashes? appear to have cycles of dramatic behavioral changes (good or bad) that

recede after 3-4 days? seem to have "headaches?" i.e., like to have his head rubbed or pressed

hard against an object or person, burrowed or be held upside down? have excessive flatulence? jump or bounce for an extended period of time?

Page 9: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

…continued have certain times of the day when he is more "hyper" than others? i.e.,

before or after meals? have a preference for chicken, fish, or pork over beef or lamb? prefer extremely bland or excessively spicy foods? have a history of reflux? (burping up acids, vomitus) have small raised "bumps" similar to "goose bumps" or little white bumps

that remain unchanged all over his/her body? have a "furrow" between his brow? have a "colicky" infancy? have a strong smelling urine or breath? have a thick "inner tube" of fat build-up around his neck? have a history of being extremely "difficult" to burp as an infant? does the child have an excessive wax build-up in his ears?

Page 10: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

What behaviors are supposed to improve? Language Less impulsive behaviors More focused Improved eye contact Socialization Fewer bouts of diarrhea and loose stools

Page 11: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

More claims… Sleep better Less stereotypy Less tantrums Happier

Page 12: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

What’s the downside? Expensive Difficult to find GFCF foods May be hard to find foods your child likes You must be 100% gluten and casein free… no

cheating ever!!

Page 13: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Suggestions… Start the diet gradually. Add more foods to your child's diet that are

acceptable BEFORE you start the diet.  Avoid cross-contamination. Read all ingredients carefully. Tell everyone in your child’s life.

Page 14: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

So what CAN they eat? Rice Potatoes Fruits and vegetables Meat, poultry, and fish Soy, nuts, and eggs http://www.glutensolutions.com/store.asp

Page 15: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Success Stories “Since he has been on the diet, he is a completely

different child.” “After 3 days without dairy, WOW! All of a sudden we had

an alert child! He was talking more, making sense of the world more, and engaging us!”

“On the second day he started making eye contact. Within a week he could recognize and recite the entire alphabet.”

“Significantly less difficult tantrums and sleeping well through the night for the first time in his four year old life. His language has increased greatly and echolalia is virtually gone.”

Page 16: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

More success stories… “Within 4 months of starting the diet, he was potty

trained, started reading, started saying long and sophisticated sentences, he lets us cut his hair without any problem, hand flapping has gone down to a minimum.”

“He started talking ten days after we began the diet.” “On the second day, he looked me straight in the eyes

and smiled, as if he had never seen my face before!” “Just last week he told me ‘I love you’.” “We cured our son's autism.”

Page 17: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchThe Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial Jennifer Harrison Elder, Meena Shankar, Jonathan

Shuster, Douglas Theriaque, Sylvia Burns, & Lindsay Sherrill

Journal of Autism and Developmental Disorders, Vol. 36, No. 3, April 2006

Page 18: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchPurpose:

This study tested the efficacy of a gluten-free and casein-free diet in treating autism using a randomized, double blind repeated measures crossover design.

Page 19: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Participants: 15 children aged 2-16 yrs with ASD (Autism

Spectrum Disorder) 12 boys and 3 girls 13 of the children completed the 12- week protocol

Page 20: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Method: Used CARS (Childhood Rating Scale) & Autism

Diagnostic Interview- Revised (ADI-R) to describe subjects

The following instruments were used to measure dependent variables: CARS, Urinary Peptide Levels (UPL), Ecological Communication Orientation (ECO) Language Sampling Summary, & In-Home observations

Page 21: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Method cont.: In-home observation:

A research assistant trained in videotaping techniques & maintaining unobtrusiveness during home visits, videotaped each child interacting with his/her primary care-taking parent for 15 minutes during unstructured sessions.

Page 22: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchMethod cont.:

In-home observation cont. Trained coders obtained behavioral counts

of parent and child behavior. Coders did not know the status of the subjects with regard to treatment phase.

Data were collected at 3 points in time: immediately before diet began, at the end of 1st dietary condition (week 6) and at the completion of study (week 12).

Page 23: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchMethod cont.:

GCRC (General Clinical Research Center) data manager randomly assigned participants to either the GFCF or a placebo diet

Children, parents, & all of the investigative team except for the data manager and dietician were blind to dietary order

Participants were provided all meals & snacks from the GCRC’s Metabolic Kitchen for 12 weeks

Page 24: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchMethod cont.:

Each participant’s regular diet was provided during baseline and for 6 weeks as the control diet

The experimental diet consisted of gluten- and casein-free counterparts food items in the control diet to insure parents & observers were blind

Page 25: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchDesign:

Randomized, double blind repeated measures cross over design of 13 children comparing two diets (regular diet vs. GFCF diet) in terms of autism symptoms measured by the CARS, ECOS, frequencies of social initiating, social responding, intelligible words spoken, and non-speech vocalizations

Page 26: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchDesign cont.:

Primary measure of efficacy was the CARS, which was measured at baseline, week 6 (at the end of regular diet) and week 12.

Urinary peptide levels were measured at 5 points (day 1, week 3, week 6, week 9, week 12)

Page 27: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchResults:

No significant differences in grouped data for urinary peptide levels of gluten and casein

No significant differences with CARS, ECOS, or behavioral frequencies

No statistically significant differences in observed parent behaviors

Page 28: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchResults cont.:

Some anecdotal reports varied from the non-significant findings

Parents of 7 children reported that there were marked improvement in child’s language, decreased hyperactivity, & decreased tantrums

Parents of 9 children decided to keep their child on the GFCF diet even though there was no empirical support for continuing

Page 29: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Results cont.: Before unblinding, parents were asked to

comment on whether they thought their child was on the GFCF diet the 1st or 2nd 6 weeks:

5 were correct 2 had no idea 6 were in correct

Page 30: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchConclusions:

Statistically non-significant findings may be the effect of small sample size, and/or large with-in group variance

Even though grouped data was non-significant for each dependent variable, behavioral & language improvements could be seen in individual children

Page 31: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Conclusions cont.: 8 parents were unable to correctly

distinguish the placebo & experimental diets

This indicates that the study was able to successfully produce & implement a GFCF placebo diet & has important implications for future dietary research

Page 32: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchLimitations:

Sample size was small & heterogeneous

Several reports of children “sneaking food” from siblings or classmates

Labels should be carefully read as there is some indication that soy products may affect urinary peptides and introduce confounds

Page 33: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Limitations cont.: CARS was a useful screening instrument, but it

may not have detected some of the more subtle changes reported by families

Some speculation regarding parental placebo effects related to the GFCF diet effectiveness

Page 34: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchFuture Research:

Use larger, more homogeneous samples

Replicate study in a more controlled educational or inpatient setting and/or extend data collection for a longer period of time

Include a combination of direct observational methods as well as several additional instruments suited to repeated measures designs that have well-established psychometrics

Page 35: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchOther studies:

Effects of a Dietary Intervention on Autistic Behavior (2003). Ann-Mari Knivsberg, Karl-L. Reichelt, Torleiv

Hoien, and Magne Nodland Focus on autism and other developmental

disabilities (2003)

Page 36: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchOther Studies cont.:

Knivsberg, Reichelt, Hoien, and Nodland (2003) and others conducted a randomized single blind study with 20 subjects to assess the effect of a gluten-casein-free diet on children with autistic syndrome and urinary peptide abnormalities.

Page 37: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Other Studies cont. Children in the control & experimental group were matched

according to severity of autistic symptoms, age, & cognitive level

Professionals outside the project randomly assigned participants to diet group or control group

Dietician gave all parents of children in diet group oral and written information about gluten-free and casein-free diet

Experimental period was 1 year, after which observations and tests were repeated

Page 38: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ResearchOther studies cont.:

Changes were observed in both the control and experimental group; however the experimental group showed more significant changes

Experimental group had improvement in autistic behavior, non-verbal cognitive level, and motor problems

Page 39: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Research

Other studies cont.: Limitations

Monitoring compliance with diet was not carried out

When evaluating changes in children’s behavior, it is difficult to decide if changes are due to intervention or maturation

Placebo effect- assumption that diet could have a positive effect could have altered the attitude of parents toward children

Page 40: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Current ResearchDiet and Behavior in Young Children with

AutismThe Autism Research Centers of Excellence: The STAART

Program Primary Site: University of Rochester Susan Hyman, M.D., Principal Investigator Study start: January 2004; Expected completion: April

2008

Purpose:This study will determine whether a gluten- and casein-free diet has specific benefits for children with autism

Page 41: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Current ResearchMethod:

30 children will be following a gluten- and casein-free diet for 18 weeks

All subjects will have 6 weeks of baseline followed by 12 weeks of randomized, double-blind, placebo-controlled, challenge snacks with careful behavioral observation and evaluation

All subjects will receive a standard vitamin supplement

Page 42: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Current ResearchMethod cont.

Receiving uniform educational and behavioral services through their provider

Standard autism evaluation methods, weekly diet and sleep diaries and scheduled laboratory tests will be used to assess subjects

Follow-up assessment will be completed at 30 weeks after the start of study

Page 43: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Current ResearchEligibility: Ages Eligible for Study:  30 Months   -   54 Months Genders Eligible for Study:  Both Criteria Inclusion Criteria:

Autism spectrum disorder or pervasive developmental disorder

Participation in applied behavioral analysis classes for at least 4 months, with at least 20 hours per week of service, and at least 1 hour of service in the home

Page 44: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Current ResearchEligibility:

Inclusion criteria cont. A score higher than 30 on the Mullen Early

Learning scale Ability to maintain a gluten- and casein-free diet

during the study In order to maintain study integrity, and due to

frequent child assessments, enrollment is limited to a select population within the Rochester area

Page 45: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Statistics and the Internet

According to The Clinical Manual for the Treatment of Autism, a Google search for the terms “autism” and “alternative medicine” yielded 600,00 sites.

As of November 16, 2007, my Google search for “diet” and “autism” yielded 1,920,000 sites.

Page 46: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Alternative Therapies and Autism One important caveat must be noted when dealing with

theories that are not supported by scientifically derived empirical data. Hype changes over time.

www.greatplainslaboratory.com/conference/Laidler.html

www.autism-watch.org/about/bio2.shtml

Page 47: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

The Elimination Diet – From One Who’s Been There & Done That The most well-known proponents of the elimination diet

are: ARI – via the DAN! Protocol, first published in 1994; Karyn Seroussi (parent); Lisa Lewis, PhD (parent).

Page 48: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Autism Research Institute

“The Autism Research Institute (ARI), a non-profit organization, was established in 1967. ARI is primarily devoted to conducting research, and to disseminating the results of research, on the triggers of autism and on methods of diagnosing and treating autism. We provide research-based information to parents and professionals around the world.”

-ARI website, autism.com

Page 49: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Dr. Bernard Rimland

Degree in Psychology from San Diego State University; Degree in Experimental Psychology, Penn State

University Son, Mark, born in 1956, “with obvious developmental

problems” diagnosed as autistic at age 2 Was a naval psychologist until retiring in 1985.

Page 50: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Rimland, continued

Early champion of Applied Behavior Analysis as initially developed by O. Ivar Lovaas.

By the early to mid-1960s, believed autism to be a biological disorder caused by external insults.

In 1967 founded ARI with Drs. Sid Baker and Jon Pangborn to investigate alternative interventions.

- The Independent, London ( November 28, 2006): autism.com

Page 51: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Jon Pangborn

Jon Pangborn, Bachelor’s degree (1963), Ph.D. (1967) in Chemical Engineering from Syracuse University. Parent of an autistic son.

Until 1981, Dr. Pangborn employed full-time in researching alternative fuels and catalytic processes involving natural gas.

In 1981, he left to engage full-time with ARI on autism and metabolic processes.

-Pangborn, J., Baker, S. (2005; 2007 Supp.). AUTISM; Effective Biomedical Treatments .

Page 52: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Sidney MacDonald Baker, MD

Sidney Baker, MD (Yale University). Residency in Pediatrics. Full-time faculty post as

Professor of Medical Computer Practices. 1971 began full-time family practitioner. Director of Gesell Institute of Human Development

becomes interested in biomedical aspects of chronic illness.

1978 returns to private practice.-Pangborn, J., Baker, S., (2005) AUTISM: Effective

Biomedical Treatments.

Page 53: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

DAN! Protocol

http://www.autisminfo.com/DAN!Protocol1_raster.gif

What is a DAN! doctor?

www.autism.about.com/od/alternativetreatments/f/dandoc.htm

Page 54: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Insert from p. 183 of DAN! Protocol guide

Page 55: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

DAN! Tools

The DAN! Protocol is contained in 318 pages of Autism: Effective Biomedical Treatments, ARI (2005) plus another 56 pages in a 2007 supplement.

The original protocol was first published in 1995. ATEC, ATEC Internet Scoring Program

Page 56: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

DAN! Protocol

Among its many biomedical interventions, the DAN! Protocol advocates the use of the GFCF diet (as well as chelation, vitamins, enzymes, and many other interventions.) www.autism.com/treatable/diet/reichelt.htm

Page 57: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ARI Guidance on Efficacy of Treatment ARI article on “How to Determine If a Treatment

Really Helped” www.autism.com/treatable/determine.htm

Page 58: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Karyn’s Journey

Karyn’s book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder, A Mother’s Story of Research and Recovery, (Broadway Books, New York, 2000 & 2005) chronicles the interventions she used with her son, Miles.

Page 59: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Seroussi’s Background

Karyn Seroussi, formerly the owner of two retail businesses, is now a freelance writer, and the cofounder (with Lisa Lewis) of ANDI, the Autism Network for Dietary Intervention.

Her husband, Alan, was a scientific researcher in clinical diagnostics in the Ortho division of Johnson & Johnson.

Page 60: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Miles’ History

Miles was born in January 1994. According to Seroussi, he develops normally

until 11 months old, although he has a history of reflux and chronic ear infections.

Page 61: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Miles &Vaccinations

Miles’ health “had never been vigorous”,; had severe reactions to his vaccinations, particularly the DPT and MMR

About 12 mos. Old, Miles has a bad virus after which he is “chronically cranky”

At 15 months, after his MMR, Miles begins to slip in development.

At 19 months, psychologist advises Miles is ASD and suggests a formal evaluation and Karyn begins researching autism.

Page 62: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Finding the Diet

While awaiting outcomes of Speech and Hearing evaluations Karyn finds books A Parent’s Guide to Autism by Charles Hart, Fighting for Tony by Mary Callahan, Is This Your Child? By Doris Rapp, and Let Me Hear Your Voice by Catherine Maurice.

Meanwhile, Alan, her husband, finds something called “Lavois”.

Page 63: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Beginning of the Diet

First, Karyn reads the Callahan and Rapp books. Both are based upon the allergy to milk theory. Tony had a rare “cerebral allergy” to milk. Rapp suggests that allergies result in behavioral as well as physiological symptoms.

Karyn immediately removes dairy from Miles’ diet and reports that within 3 weeks she sees less screaming & better eye contact. “We could really see a difference.”

Page 64: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Diet Continued:

Karyn now begins to contact the opiod theorist, Dr. Stephen Bauer.

Miles begins Sensory Integration Therapy, Speech Therapy, and is evaluated for Early Intervention services from the county.

Then, Karyn reads Let Me Hear Your Voice.

Page 65: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ABA

Karyn immediately adds a “Lovaas” based ABA program to Miles’ therapies.

Page 66: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Seroussi Finds Lewis

Karyn’s internet research brings her into contact with Dr. Paul Shattock, University of Sunderland, England, who subscribes to Reichelt’s theory of opiods.

Shattock mentions Lisa Lewis.

Page 67: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Seroussi - Lewis Connection

She also comes into contact with Lisa Lewis, another parent who advocates gluten free, casein free, phenolic free diets plus digestive enzymes and Gamma Linoleic acid supplementation.

Page 68: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Seroussi and ARI

Karyn links up with Dr. Bernard Rimland at ARI. (Dr. Rimland earned his Ph.D. in experimental psychology and research design from Penn State University). Dr. Rimland who is putting together a collaboration of like-minded scientists to create the first DAN! (Defeat Autism Now) Conferences and to generate the DAN! Protocol Manual.

Page 69: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Diet Continued:

Karyn also researches Dr. William Crook, author of The Yeast Connection (1983) and William Shaw, Ph.D., who later authors Biological Treatments for Autism and PDD (1998).

Page 70: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

MD from the University of Virginia Fellow, American Acad. Of Pediatrics; American

College of Asthma, Allergy & Immunology; American Academy of Environmental Medicine

Dr. William Crook

Page 71: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

William Shaw, Ph.D.

Ph.D. in Biochemistry, board certified in Clinical Chemistry & Toxicology.

Founder of The Great Plains Laboratory in Kansas that tests for IgG food allergies, and for blood and urine peptides.

Page 72: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Karyn’s Journey continued: Over the next three years, Karyn’s research

takes her into the area of gluten free diet, the yeast connection and supplements.

Her husband, Alan, uses J&J facilities to isolate “dermorphin” in addition to gluten and casein opiod urinary peptides. Posits that diet is not enough, need anifungals, and other biomedical interventions as well.

Page 73: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Karyn’s Journey continued:

Miles continues with the GFCF diet, ABA, multivitamins, Nystatin, Flagyl, DMG, EFAs, probiotics, SI, and, (after meeting Dr. Andrew Wakefield) Secretin.

By age 4 ½, Miles enters a neurotypical kindergarten. All his biomedical interventions, however, continue.

Page 74: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Karyn’s Explanation For Miles’ “Recovery” “As much as the discrete trial therapy and the

physical therapy helped Miles to catch up, neither of them would have been one-tenth as effective if he had not been on the diet. I simply knew this to be true. “

Page 75: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Why Did Maurice Children “Recover” Without Diet? Seroussi (and Shattock) believe that the Maurice

children “recovered” with only ABA and no diet because it might have been triggered by mumps virus, with temporary damage reversible by intensive therapy, or if measles based, the missing enzymes are somehow triggered “and the problem goes away. This would explain the ‘spontaneous recoveries you sometimes hear about without use of the diet.” (p.191).

Page 76: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Karyn’s Diagnosis of Miles Now

“’[A]utism’ describes behavior. I am not afraid to say that my son has a [biologically based] disease [‘autistic enterocolitis’ as a result of ‘persistent measles virus infection of the ileum’] that causes autism, but it would be inaccurate to say that he is autistic. He is not.”

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Lisa Lewis, PhD

Biography www.autismtoday.com

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ANDI

Seroussi and Lewis found ANDI, the Autism Network for Dietary Intervention.

www.autismndi.com

Page 79: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Lewis’ Journey With Sam

Son, Sam, has normal development, but by 2 years, lagging badly. At age 3 ½, a neurologist confirmed husband’s diagnosis of Sam as PDD-NOS, and an evaluation by the Eden Institute recommends an educational placement more specific to autism than Sam’s current pre-school handicapped program.

Sam placed at the Douglass Developmental Disabilities Center the following fall.

Pending his start at Douglass, Sam becomes aggressive. Lewis decided to remove dairy, and although behavior improved, it remained a “significant problem”.

Page 80: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Journey Continued:

Sam does “very well” at Douglass with ABA, including mild aversives to eliminate aggression.

Lewis not comfortable with use of aversives “and felt that they in fact escalated the behaviors”, so permission for their use if withdrawn.

Sam’s aggressions increase.

Page 81: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

How Lewis Treats Sam

“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.”

Shortly thereafter, she finds Reichelt’s and Shattock’s papers and determines that gluten is the culprit and eliminates them.

Page 82: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Lewis’ Results:

Result – “Within a week”, Sam’s language improves, his attention span increases, and he responds “more quickly” to lessons at Douglass, home, in private speech and occupational therapy.

Sam is then placed on strict anti-yeast diet. Dr. Sidney Baker orders extensive blood, urine, saliva and stool testing. He adds vitamins, calcium, and zinc. Lewis later adds molybdenum, magnesium, EFAs, DMG, L-Carnitine, probiotics, inositol, ginkgo extract, pycnogenol, and octocosanol.

Page 83: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Diet Continued:

No benefits seen from DMG, L-Carnitine, pycnogenol or octocosanol, so removed.

Sam continued at Douglass, and this year was transitioned into “regular” school. He is in a self-contained class for academics with a 1:1 aide trained by Douglass.

Page 84: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Lewis’s Explanation:

“Sam’s diet and nutritional supplements are certainly not the only things that have helped Sam. He spent four years at an excellent school [Douglass], and attended weekly speech and sensory integration therapy for five years. For two years he wore yoke prism glasses and visual therapy prescribed by Dr. Melvin Kaplan of Tarrytown, New York.”

Sam also takes Risperidal during the winter to combat increased tantrums and difficult behavior seen on a seasonal basis.

Page 85: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Lewis Second Son & Diet:

Sam’s brother, Jake, was born when Sam was 3 (pre-Sam diet).

At 9 months, Lewis concerned about his “little pre-verbal development”. Milk made him fussy so she substituted soy. Within days she reports he was saying “Mamammamama” and “dadadada” and the like and his development has since been normal.

“Did I ‘save’ him from autism? From some other developmental disability? I’ll never know.”

Page 86: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Nonfalsifiable Hypothesis Karyn Seroussi is careful to point out in her book that a

professor of hers who taught “Pseudoscience and the Paranormal” warned about “Nonfalsifiable hypotheses” and emphasized the need for careful scientific experimentation. Seroussi credits this emphasis in causing her to be “objective” in her evaluation and assessments of changes in her son.

Page 87: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Deficits in Seroussi & Lewis Evaluations: In the case of the elimination diet, neither Seroussi nor

Lewis, nor anyone else, for that matter, can scientifically prove or disprove its impact.

Neither Seroussi nor Lewis limited their interventions strictly to diet. There was no way to account for maturation, history, or any other variable, given so many things were done at once.

Page 88: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Nutritional Dangers: Elimination of dairy and gluten runs the possible risks of

inadequate proteins, minerals and vitamins in the diet. Preliminary scientific research studies have shown that

the diet has been associated with decreased bone density. (Brudnak et al. 2002 Hediger et al. 2005).

Page 89: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Dangers continued: Parents may be unsupervised by physicians and/

or nutritionists in implementing the diet.

Page 90: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Dangers continued: Parents may be easily convinced that they need to use

additional interventions: e.g. enzymes, supplements (regulated and unregulated), homeopathics, etc.

www.autismone.com/uploads/Devin%20Houston%20AO%202007%20presentation.ppt

www.sagemedlab.com/ads/autism.html?_kk+autism&_kt+4692ee9e-5838-4bc8-81

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Dangers continued: Parents have unrealistic expectations about the

purported effects of alternative treatments. Parents ignore validated interventions or dilute

commitment to validated treatments.

- The Road Less Traveled: Charting a Clear Course for Autism Treatment;

Page 92: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

The ABA Community and The Biomedical Community At least one ABA based website has taken a position

with respect to Biomedical Treatments. Does not discredit biomedical notions, encourages

scientific designs; however, allows for concurrent interventions.

www.centerforautism.com

Page 93: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

Epilogue

The skepticism raised in this presentation is not to suggest that there is not some biologically based cause or confluence of causes (genetic or otherwise) resulting in Pervasive Developmental Disorders. However, it has yet to be empirically demonstrated with scientific rigor.

Page 94: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

The Parent Trap – False Hopes Can Be Deadly

The danger in all the “hype” created by unproven treatments can best be seen in a recent article in The New York Times.

www.aapd.com/News/education/060606nyt.html

Page 95: Elimination Diets The Gluten and Casein Free Diet Presented by Jennifer Wertalik, Diana Kelly, and Cindy Romero.

ReferencesElder, J. H., Shankar, M., Shuster, J., Theriaque, D., Burns, S., & Sherrill, L.

(2006). The Gluten-free, casein-free diet in autism: resluts of a preliminary double blind clinical trial. Journal of Autism and Developmental Disorders, 36, 413-420.

Green, V., Pituch, KA, Itchon J., Choi, A., O’Reilly, M., Sigafoos, J. (2006). Internet survey of treatments used by parent of children with autism. Research in Developmental Disabilities, 27, 70-84.

Hollander, E., Anagnostou, E. (2007). Clinical Manual for the Treatment of Autism, Virginia: American Psychiatric Publishing, Inc.

Jacobson, J. W. , Foxx, R. M., Mulick, J. A. (2005). Controversial therapies for developmental disabilities: fad, fashion, and science in professional practice. New Jersey: Lawrence Erlbaum Associates, Inc.

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ReferencesKnivsberg, A., Reichelt, K., Hoein, T., & Nodland, M. (2003). Effects of a

dietary intervention on autistic behavior. Focus on Autism and Other Developmental Disabilities, 18, 247-256.

Lewis, L. (2005). Special diets or special people. Texas: Future Horizons, Inc.

Pangborn, J., Baker, S.M.,(2005, Supp. 2007). Autism: Effective Biomedical Treatments. California: Autism Research Institue Publications.

Seroussi, K. (2002). Unraveling the mystery of autism and pervasive developmental disorder. New York: Broadway Books). [originally published 2000, New York, Simon & Schuster].

Shaw, W. (1998). Biological Treatments for Autism and PDD. Kansas: The Great Plains Laboratory.

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Referenceswww.sagemedlab.com/ads/autism.html?_kk+autism&_kt+4692ee9e-5838-

4bc8-81...www.centerforautism.comwww.aapd.com/News/education/060606nyt.htmlhttp://clinicaltrials.gov/ct/chow/NCT00090428www.autismtoday.com www.greatplainslaboratory.com/conference/Laidler.htmlwww.autism-watch.org/about/bio2.shtmlwww.bbbautism.com/beginning_the_gfcf_diet.htmhttp://www.glutensolutions.com/index.asp

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Referenceswww.autism.about.com/od/alternativetreatments/f/dandoc.htm

www.autismndi.com

ww.autismone.com/uploads/Devin%20Houston%20AO%202007%20presentation.ppt

www.sagemedlab.com/ads/autism.html?_kk+autism&_kt+4692ee9e-5838-4bc8-81...

http://autism.com/www.gfcf.comen.wikipedia.org/wiki/Gluten-free,_casein-free_dietwww.autismweb.com/diet.htmautism.about.com/od/ specialdietsandautism/a/startgfcf.htm