<<Disclaimer: Verify this information before applying it to your situation.>>
 
RE:
<<<It is my personal opinion that the post by Len B. of the Discovery Group
with the above subject heading is outrageous and innappropriate for the
celiac list. >>
 
I could not disagree more and would like to thank Len profusely for
alerting us to an important developement in an area that is fundamental to
the health of those with malabsorption symdromes.
 
The only reason that I do NOT have REFRACTORY celiac is that I take large
(much more than the RDA) does of vitamins.     On each and every occassion
during the last 17 years when I, for whatever reason, either ceased, or
merely reduced dosages too much, on the vitamins I experienced a rapid
return of defficiency sympotms.      This is NOT medically unknown!   A
number of articles in medical journals dealing with prisoners of war who
had suffered from marked malabsorption noted that many of them developed
vitamin "dependencies"   i.e.:   they enjoyed normal health so long as they
took large (in some cases very large) doses of vitamins but developed
serious defficiences if the supplements were discontinued.    Most of these
were able to gradually reduce the dosages over many years but some were
never able to entirely eliminate the "dependency".     This certainly was
MY experience.     I shudder to think what my life would become if I was
not allowed to purchase vitamins without a prescription!        Given the
frequent appallingly ignorant attitudes toward vitamins displayed by many
physicians even today,  I know that it would be very difficult to justify
(to THEM) my needs for large amounts.    Thus, even though they are
exceedingly safe and non-toxic (far more so than virtually all drugs),  I
might be forced to emmigrate to a more tolerant governement rather than
suffer the extreeme but totally preventable health problems I would
experience without appropriate supplementation.  (I suppose that I would be
classifed as "refractory" celiac and that would be that!
 
THANK YOU, Len for alerting us to this critical development!
 
RE:  << I suspect that the people who
suffered severe and irreversible neurological damage from taking tryptophan
are all supportive of their rights to take anything they please and will
write to their congressmen in support of the Discovery Group. >>
 
The problems caused by tryptophan supplements were NOT due to tryptophan
but to a CONTAMINANT in the supplements.   That could happen with ANY
product, even a drug.    That tryptophan continues to be banned years after
the cause of the problem was discovered is inexcusable and, in my opinion,
justifies concerns about having the government regulate things that are NOT
the appropriate object of regulation.   The people damaged from taking the
tryptophan spplements were NOT damaged by the FDA's failure to ban
tryptophan  (no more than the people who were poisioned eating hamburgers
at the Jack-in-the-Box were damaged by the failure to ban hamburgers!).
They were damaged by the failure of the FDA to unsure that the product did
not contain toxic contaminants.
 
The extent of the government's hypocrital double standard in relation to
vitamins and food labeling is exemplified by the insistance that all
products containing phenyalanine (which are toxic to those few (far fewer
than celiacs!) with phenylketonuria) be labeled as such (as they should be)
but NOT requiring labeling for gluten and continuing the ban on
tryptophan when there is no justifiable reason for doing so.
 
<< In a more
serious vein, I do think the FDA should be invited to reply to the Discovery
Group post.  I think list subscribers might be surprised by what they learn.>>
 
I would be VERY interested in hearing what they have to say about the ban
on tryptophan (as well as some other safe and therapeutically useful
substances).
 
Jim Barron
Chapel Hill NC
[log in to unmask]