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  1. You Are What You Eat A Review of Diets for Autism Treatment Erika Koelsch

  2. Search Critera • PsychInfo, Academic Search Premiere, ERIC, MEDLINE • “autis*” and “diets”, “gluten”, “gluten-free”, “casein-free”, “Feingold”. • Google searches • “Autism and diets”, “gluten-free diets”, “casein-free diets”, “celiac disease”, “Defeat Autism Now”, “Feingold”.

  3. What Diets are out there for Autism Treatment? • GFCF (Gluten-Free, Casein-Free) • Specific Carbohydrate Diet • Feingold Diet

  4. Autism Research Institute • Non-profit founded in 1967 • Bernard Rimland, Ph.D • Conferences about GI disorders “impact a child’s sense of self, behavior, attention, speech, and general health and wellbeing. Our SCIENTIFIC principles and protocols apply to affected children of all ages, and varying conditions.” Jane Johnson, Managing Director, ARI • Credit ABA, OT and Speech however….. • “little true or lasting progress or benefit can be expected.” Autism Research Institute. (2010). Retrieved from http://www.autism.com/ Autism Research Institute Conference. (2010). Retrieved from http://www.defeatautismnow.com/

  5. Defeat Autism Now! (DAN! Project) • Sidney M. Baker, M.D. in 1994 • biochemical, immunologic, and gastroenterological • Point to new biomedical treatments • Dr. Baker, Dr. Rimland and Dr. Jon Pangborn founded Defeat Autism Now! • Objectives of Defeat Autism Now! • Teach about biomedical treatments • Offer conferences about latest research on biomedical treatments for autism • Provides a list through ARI of DAN! Doctors in the US and outside Autism Research Institute. (2010). Retrieved from http://www.autism.com/

  6. DAN! Doctors • From the ARI website, DAN! Doctors must meet these criteria to be placed on the list: • “The clinician is a licensed healthcare provider. • The clinician must attend a Defeat Autism Now!® Clinician Seminar at least once every two years. • Starting in 2010, clinicians must attend a level I and a level II seminar to be listed on ARI's clinician registry. • ARI reserves the right at their sole discretion to not include, or to remove, a practitioner from the Clinician Registry.” • Doctors must also adhere to the Defeat Autism Now! Philosophy • Also lists for naturopaths and homeopaths and nutritionists Autism Research Institute. (2010). Retrieved from http://www.autism.com/

  7. DAN! Conferences • http://www.autism.com/pro_categories.asp?con=Baltimore&Year=2010 • Defeat Autism Now! October Conference Science Sessions • Mitochondria and Autism • Update on Gastrointestinal Topics in Autism • Redox Effects of Gluten/Casein Peptides and Neurotrophic Growth Factors and Their Implications for Autism • All Speakers are MDs or Ph.ds Autism Research Institute Conference. (2010). Retrieved from http://www.defeatautismnow.com/

  8. RED FLAGS of ARI and DAN! • Remark on importance of biomedical without supporting details or evidence website … propaganda? Pseudoscience? • Big names and buzzwords • DAN! Doctors • Red Flag? Autism Research Institute. (2010). Retrieved from http://www.autism.com/

  9. Diets

  10. What is a Gluten Free Diet? • Often called GFCF (gluten-free, casein-free diet) • Removal of all gluten and casein from daily diet • What is a casein? • Casein is a protein found in milk • Gluten/Casein free diet consists of no gluten and no milk/dairy products including casein Gluten-Free/Casein-Free Diets for Autism. (2010). WebMD. Retrieved from http://www.webmd.com/brain/ autism/gluten-free-casein-free-diets-for-autism

  11. What is Celiac Disease? • Damage to the small intestine • Absorption of food difficulties • Gluten- protein in wheat, rye and barley • Gluten found in food or other products • Special considerations • Untreated can cause anemia, and cancer • Sometimes does not show symptoms National Digestive Diseases Information Clearinghouse. (2010). Celiac Disease. Retrieved from http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

  12. Symptoms • Symptoms of Celiac Disease • In Children and Infants: • Bloating or abdominal pain • Diarrhea • Vomiting • Constipation • In Adults: • Anemia • Fatigue • Joint pain • Depression or anxiety • Seizures • Miscarriage/infertility • Co morbidity National Digestive Diseases Information Clearinghouse. (2010). Celiac Disease. Retrieved from http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

  13. Treatment for Celiac Disease • GLUTEN-FREE DIET

  14. Gluten-Free Diet Video • Elizabeth Hasselbeck • http://www.youtube.com/watch?v=oSJ-nrYETzs

  15. Gluten-Free/ Casein-Free and ASDs • Why are gluten-free casein-free diets relevant to those with ASDs? Suggested that: • These diets reduce symptoms of autism • Assist with children who have a food allergy • Promote skill acquisition • Many parents have stated incredible success in their child with ASDs • Overall consistency between Vaccines and Diets • Biomedical model The GFCF Diet Intervention - Autism Diet. (n.d.). Retrieved from http://www.gfcfdiet.com

  16. How does this occur? • Various GI symptoms in those with autism • Diarrhea, bloating, pain • Associated with abnormalities in small intestine mucous and GI function • In those with autism, the walls of the small intestine are “leaky” and therefore gluten and casein proteins go into blood stream • The dietary gluten and casein in the bloodstream create peptides that are similar to opioid substances • This induces “antigenic” responses which affects the central nervous system • “Opioid Excess” theory of autism • Reaction to pain, hunger and thirst Munasinghe, S. A., Oliff, C., Finn, J., & Wray, J. A. (2010). Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double-Blind Randomized Controlled Trial. Journal of Autism and Developmental Disorders, 40, 1131-1138.

  17. ANDI • Autism Network for Dietary Intervention • Offers information for parents of children with autism on special diets • Newsletters • Sample Letter http://www.autismndi.com/ Autism Network for Dietary Intervention. (2010). Retrieved from http://www.autismndi.com/

  18. AutismONE • AutismOne • Non-profit started by parents of children with autism • Very disturbing website in many ways • http://www.autismone.org/ AutismOne. (2010). Retrieved from http://www.autismone.org/

  19. Talk About Curing Autism (TACA) • Focuses on newly diagnosed children with autism • Most successful combination • Traditional Therapies • Biomedical Therapies • Keeping Family Healthy • Mission: • To speed up time between diagnosis and appropriate intervention • Connect parents and provide support TACA: Talk About Curing Autism . (2010). Retrieved from http://www.talkaboutcuringautism.org/support/autism_intro.htm

  20. The TACA Spokeswoman…. • JENNY MCCARTHY • http://www.youtube.com/watch?v=zVZDPrgwZ78

  21. Julie Matthews • Healthful Living • With husband Martin Matthews created a “lifestyle that promotes the health, healing, and happiness of all living things” • Martin Matthews • Hypnotherapist • Focuses on personal wellness, personal freedom, emotional trauma, and stress reduction • Julie Matthews • Certified Nutrition Consultant • Focuses on ASDs, pregnancy wellness, woman’s health, digestion • Nourishing Hope for Autism Healthful Living. (2010). Retrieved from http://www.healthfullivingsf.com/

  22. Nourishing Hope For Autism Healthful Living. (2010). Retrieved from http://www.healthfullivingsf.com/

  23. Julie Matthews • Holistic Nutrition • Uses basic needs of body • Traditional “Healing” Foods • Addresses the whole person • The Flow-Chart • http://www.healthfullivingsf.com/autism/ • Supports nutrition for healthy living--- AND autism dietary interventions • http://www.prweb.com/releases/2007/10/prweb560337.htm Healthful Living. (2010). Retrieved from http://www.healthfullivingsf.com/

  24. Newsletter • “Reality Sandwich” • Various guests on upcoming radio show • For example: • Hypno-Birthing Healthful Living. (2010). Retrieved from http://www.healthfullivingsf.com/

  25. Correspondence • GFCF website • Ellie Fried ( North Jersey Chapter of R.O.C.K- Raising our Celiac Kids) • "Raising Our Celiac Kids (R.O.C.K.)" We welcome families of children with autistic spectrum disorders who are using a gluten-free/casein-free dietary intervention program.  http://www.gfcfdiet.com/communitybulletinboard.htm

  26. Correspondence • Julie Matthews • Referred me to her book, Nourishing Hope for Autism • Another example of self-citing

  27. Felix • 29 year old • Lives in Denmark • Has Asperger’s Syndrome • Chronicles Gluten-Casein Free Diet journey on YouTube • http://www.youtube.com/user/BumsenDK#p/a/u/0/FEjdCFPK3Jk BumsenDk's Channel. (2010). Retrieved from http://www.youtube.com/user/BumsenDK#p/a/u/0/FEjdCFPK3Jk

  28. What does Gluten-Free, Casein-Free diets claim to do? • By not eating gluten or casein, eliminate the proteins from entering the bloodstream • Eliminating opiod effects and autism symptoms Munasinghe, S. A., Oliff, C., Finn, J., & Wray, J. A. (2010). Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double-Blind Randomized Controlled Trial. Journal of Autism and Developmental Disorders, 40, 1131-1138.

  29. Special Carbohydrate Diet • Dr. Haas pioneered the Haas diet in 1951 • Fungi and Bacteria in GI track • Renews toxin removal system • Supported by Dr. Sidney Baker • Removal of starches and complex sugars • “This removal helps kill major yeast and bacterial overgrowth. Mal-absorption decreases, rebalancing gut flora and encouraging healing.” • http://www.pecanbread.com/ http://www.The Scientific Diet for GI Problems, Autism, and Other Conditions. (n.d.). Retrieved from http://pecanbread.com/ .pecanbread.com

  30. What does Special Carbohydrate Diet claim to do? • Heal GI tract by removing starches that damage it over time • Deal with gluten/casein intolerance rather than resolve symptoms • Combat celiac disease by curing intolerance http://www.The Scientific Diet for GI Problems, Autism, and Other Conditions. (n.d.). Retrieved from http://pecanbread.com/ .pecanbread.com

  31. Feingold Diet (Feingold Association of the United States)

  32. Feingold Diet • Dr. Ben F. Feingold • Linked diet and behavior in 1960s • Later in life, he travelled the US to spread the message of the Feingold Diet to those areas that were not yet exposed. Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  33. What is the Feingold Diet? • Originally used for ADHD, however now used for other disorders/conditions • Elimination of artificial additives • Artificial (synthetic) coloring • Artificial (synthetic) flavoring • Aspartame (NutraSweet, an artificial sweetener) • Artificial (synthetic) preservatives BHA, BHT, TBHQ • http://www.youtube.com/watch?v=Uptp94xLchk Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  34. What is involved? • Program materials ($82.50) • Food and shopping list • Feingold member book • Supplement guide • Mail order guide • Fast Food Guide • Pure Facts Newsletter • Members section on website • Help-Line • Email alerts • http://www.feingold.org/DOCS/brochure.pdf Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  35. What does the Feingold Diet Claim to do? • Commonly helps • Behavior • Learning • Health Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  36. Behavior • Marked Hyperactivity • Inability to sit still • Wiggling • Running • Impulsive Actions • Poor self-control • Disruptive behavior • Abusive behavior (e.g., unkindness to pets) • Destructive behavior • Excessive, loud talking • Inappropriate noise • Compulsive Actions • Aggression • Perseveration • Excessive touching • Picking skin • Workaholic habits • Emotional Concerns • Attention • Irritability • Mood swings • Depression • Panics and nervousness • Suicidal thoughts Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  37. Learning • Short Attention Span • Impatience • Distraction • Inability to listen • Inability to follow directions • Inability to complete projects • Cognitive and Perceptual Disturbances • Auditory memory deficits • Visual memory deficits • Difficulty in comprehension • Difficulty in Spatial Orientation • Difficulties in reasoning • Neuromuscular Involvement • Accident prone • Poor muscular coordination • Difficulty writing and drawing • Dyslexia • Speech difficulties • Difficulty with sports • Eye muscle disorders • Tics • Seizures Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  38. Health • Frequent Physical Complaints • Ear infections • Asthma • Bedwetting • Daytime wetting • Stomachaches • Headaches • Hives/Rashes • Eczema • Leg aches • Congestion • Seizures • Sleep Problems • Resistance going to bed • Difficulty going to sleep • Restless erratic sleep • Nightmares Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  39. MORE on the Reputable Feingold Website… • Research • Many references for different disorders/conditions • A list of references published by Dr. Feingold himself • The Feingold Shop • Totes • T-shirts • Mugs • Christmas stockings • “I’m 100% Natural” • “Artificial Colors are Good for Crayons” • “If you love me, please don’t feed me junk” Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/

  40. Research to Support these Claims? • Few studies however, none with statistical significance • Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double Blind Randomized Controlled Trial • Munasighe, et al. • The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial • Elder, et al. • Review article: the concept of entero-colonic encephalopathy, autism and opiod receptor ligands • A.J. Wakefield, et al.

  41. . Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double Blind Randomized Controlled Trial • Purpose: • Does digestive enzyme supplement (Peptizyde) improve expressive language, behavior and other symptoms in ASDs • Participant • 43 children, 3-8 years-old, with ASD • Method • Two groups- • Sequence 1- Enzyme, washout, Placebo • Sequence 2- Placebo, washout, Enzyme Munasinghe, S. A., Oliff, C., Finn, J., & Wray, J. A. (2010). Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double-Blind Randomized Controlled Trial. Journal of Autism and Developmental Disorders, 40, 1131-1138.

  42. Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double Blind Randomized Controlled Trial • Rating Scales- completed monthly • Global Behavior Rating Scale (GBRS)- effects of synthetic secretion on behavior and communication. • Ordinal scale- 1) much worse, 4) no change, 7) much better • Additional Rating Scale (ARS)- GI symptoms • Quality of stools, Abdominal pain, diarrhea/constipation • Therapist Rating Scale • Teacher rating • Language Development Survey • Results? • No significant difference!! • Food variety score, parent behavior score, GI symptoms, Sleep quality, therapist engagement, Vocabulary score, sentence length score. Munasinghe, S. A., Oliff, C., Finn, J., & Wray, J. A. (2010). Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double-Blind Randomized Controlled Trial. Journal of Autism and Developmental Disorders, 40, 1131-1138.

  43. The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial • Purpose: • Study gluten-free, casein-free diet in treating autism • Participants • 15 children, 2-16 years-old with ASD • Method • 2 Groups • Group A- Baseline, Diet 1 (regular diet), Diet 2 (GFCF diet) • Group B- Baseline, Diet 2 (GFCF), Diet 1 (regular diet) Elder, J. H., Shankar, M., Shuster, J., Theriaque, D., Burns, S., & Sherrill, L. (2006, April). The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial. Journal of Autism and Developmental Disorders, 36(3), 413-420.

  44. The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial • Rating Scales • CARS- Childhood Autism Rating Scale • ADI-R- Autism Diagnostic Interview, Revised • In home observations • UPL- Urinary Peptide Levels • ECO- Ecological Communication Orientation (Language Sampling Summary) • No statistically significant difference on any of the rating scales Elder, J. H., Shankar, M., Shuster, J., Theriaque, D., Burns, S., & Sherrill, L. (2006, April). The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial. Journal of Autism and Developmental Disorders, 36(3), 413-420.

  45. Review article: the concept of entero-colonic encephalopathy, autism and opiod receptor ligands • Gut development and autism • Reported: • 46% of children out of 385 with autism had GI symptoms • 10% of children 385 typically developing • Description of autism…? • Described many studies with autism and GI symptoms • Connection between Opiods and CNS • No real research or connections, just review of previous research Wakefield, A. J., Puleston, J. M., Montgomery, S. M., Anthony, A., O'Leary, J. J., & Murch, S. H. (2002). Review article: the concept of entero-colonic encephalopathy, autism and opiod receptor ligands. Ailment Pharmacological Therapy, 16, 663-674.

  46. Are Diets Worth It? • NO! • For autism Treatment, no! • No scientific evidence to prove its effects • Healthy lifestyle? Vs Diets for treatment • To quote Dr. Sharon Reeve…

  47. In Conclusion… • http://www.youtube.com/watch?v=3zEXgQIYCWU&feature=related

  48. Any Questions? THANK YOU!

  49. References • Autism Network for Dietary Intervention. (2010). Retrieved from http://www.autismndi.com/   • Autism Research Institute. (2010). Retrieved from http://www.autism.com/   • Autism Research Institute Conference. (2010). Retrieved from http://www.defeatautismnow.com/ • AutismOne. (2010). Retrieved from http://www.autismone.org/   • Elder, J. H., Shankar, M., Shuster, J., Theriaque, D., Burns, S., & Sherrill, L. (2006, April). The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial. Journal of Autism and Developmental Disorders, 36(3), 413-420.   • Feingold Association of the United States. (2010). Retrieved from http://www.feingold.org/   • Glutein-Free/Casein-Free Diets for Autism. (2010). WebMD. Retrieved from http://www.webmd.com/brain/ autism/gluten-free-casein-free-diets-for-autism

  50. References Cont. • The GFCF Diet Intervention - Autism Diet. (n.d.). Retrieved from http://www.gfcfdiet.com   • Healthful Living. (2010). Retrieved from http://www.healthfullivingsf.com/   • Munasinghe, S. A., Oliff, C., Finn, J., & Wray, J. A. (2010). Digestive Enzyme Supplementation for Autism Spectrum Disorders: A Double-Blind Randomized Controlled Trial. Journal of Autism and Developmental Disorders, 40, 1131-1138.   • TACA: Talk About Curing Autism . (2010). Retrieved from http://www.talkaboutcuringautism.org/support/ autism_intro.htm  The Scientific Diet for GI Problems, Autism, and Other Conditions. (n.d.). Retrieved from http://pecanbread.com/   • Wakefield, A. J., Puleston, J. M., Montgomery, S. M., Anthony, A., O'Leary, J. J., & Murch, S. H. (2002). Review article: the concept of entero-colonic encephalopathy, autism and opiod receptor ligands. Ailment Pharmacological Therapy, 16, 663-674. • YouTube. (2010). Retrieved from http://www.youtube.com