Subject: Re: Prader-Willi Syndrome
From: (Ron Hoggan)
Date: Tue, 03 Sep 1996 05:33:28 GMT

On Sat, 31 Aug 1996 12:35:35 -0400, Debbie  wrote:

>I am seeking information about Prader-Willi Syndrome.
>I have a patient who has survived long past the expected
>lifespan of a Prader-Willi sufferer. The Prader-Willi
>research center in Pennsylvania has been unable to give
>us any information about what we can expect to see in a 
>patient who has lived this long with the disorder. I 
>would appreciate any information about the disease itself

Hi Debbie,
I am not a doctor. Nonetheless, if you will refer to Dr. Paul Black's 
article in the Nov/Dec 1995 issue of Scientific American: SCIENCE &
MEDICINE, pages 16 to 25, he clearly indicates that opioids will attach at
the HPA axis. Since Prader-Willi is a hypothalmic-pituitary disorder,
opioids may be involved. Since this area of the brain, as Black points out,
is not protected by the blood brain barrier, exogenous opioids might be 
involved. Further, Zioudrou et. al. in "Opioid Peptides Derived from Food 
Proteins" _Journal of Biological Chemistry_ 1979; 254(7): 2446-2449, have 
clearly demonstrated that opioids can be derived from gluten and alpha 
casein. Additionally, Husby et. al. "Passage of Undegraded Dietary 
Antigen into the blood of Healthy Adults" _Scand. J. Immunol._ 1985; 22: 
83-92, have demonstrated the means (permeable intestine) by which such 
opioids enter the bloodstream.

May I suggest that you get antigliadin antibody blood testing? If 
positive, follow-up testing for celiac disease might be in order. 
Regardless of the outcome of the cd test, a gluten-free, casein-free diet 
might aid in this person's survival. 

I hope this is helpful.

Ron Hoggan   Calgary, Alberta, Canada