Rare Disorders  
Linda Blevins, Division Director
The MAGIC • Touch Fall 1998
Vol. 9, Issue 3 		  Reprinted with the permission of The MAGIC Foundation
1327 N. Harlem Avenue, Oak Park, IL 60302-1376
1 (800) 3 MAGIC 3
(708) 383-0808 Fax: (708) 383-0899
E-Mail: mary@magicfoundation.org
CONVENTION
     The convention was a huge success!!!! Over six hundred adults and children attended the conference. Educational sessions were offered on Saturday. Leading experts in Thyroid, Growth Hormone and specialist in Turner's Syndrome and Russell-Silver Syndrome and precocious puberty were there to share new information and the latest studies. In the afternoon group networking sessions allowed families to discuss personal situations and concerns.
     Evening events allowed families to network and bond. For some of us this was our third convention! What a joy to see the children singing karoke and doing line dancing. The children also loved "carnival" night. The older children enjoyed the field trip.
     Thursday evening the pharmaceutical companies and home health companies exhibited. What an opportunity to garner trade information and the occasional free gift. Thank you Eli Lilly for the marvelous elephant back pack. My son just loves it.

GLUTEN, CASEIN AND AUTISM
     The University of Florida is conducting a study looking at behavior and autism as it relates to allergies that develop from the inability to break down gluten and casein. Participation in the study is FREE.
     Gluten is a protein peptide that is found in wheat, oats, barley and rye. Casein is a protein peptide that is found in all milk and dairy products. These peptides are unique in that they have a morphine like structure. The body then has the ability to convert them to caseomorphin-7 and gliadorphin-7. The researchers then hypothesize that these peptides bind to the opioid receptor sites in the brain causing either schizophrenic or autistic type behavior.
     Dr. Cade at the University of Florida speculates that the intestinal mucosa is sensitive to gluten or casein and allows these peptides to enter the blood. The researchers recommend a gluten and casein free diet. Most participants see and improvement in behavior.
     TESTING To participate in the study is free. Contact:

Dr. Cade The University of Florida, Health Science Center
PO Box 100204, Gainesville, FL 32610
(352) 392-8952
FOLIC ACID AND DOWN SYNDROME STUDY
     Dr. Jill James, PhD, Senior research investigator at the National Center for Toxicology Research is conducting a study with the University of Arkansas to investigate the implications of the folic acid reducing enzyme MTHFR.
     Some recent scientific evidence suggests that abnormalities in the metabolism of dietary components such as the vitamin folic acid, may be present in mothers who have a child with DS. Problems with the body's use of folic acid compounds may be a risk factor for chromosomal abnormalities which are a major cause of DS. In addition, problems with the body's use of folic acid and related compounds may also be responsible for some of the medical problems seen in individuals with DS.
     The blood will be tested in the laboratory for their ability to metabolize nutrients, such as folic acid and certain amino acids. If abnormalities are found, other nutrients will be added to the lymphocyte culture to normalize the metabolic pathways. The DNA will also be evaluated for abnormalities. Dietary recommendations will be made to the participants.
     The cost of the study is free. You will be asked to fill out a nutritional questionnaire.
Jill James, PhD
National Center for Toxicological Research
(501) 320-2966
 
  Revised: February 21, 1999.