Posted by jcc on August 6, 2007, at 12:30:42
In reply to pyroluria supps...my experience...it's WORKING !!!, posted by joebob on May 16, 2005, at 20:16:57
I found this by googling "pyroluria". My daughter tested positive for pyroluria many years ago. I had her tested after reading about it on BT, posts by FJ. My daughter had a history of seizures, mood swings, gluten sensitivity and more. Still not sure how the gluten sensitivity fits, but it seems to fit somehow.
I just wanted to add that while it took us a couple of years to connect with a doctor who understood it, my daughter's response to the supplements was remarkable. Her symptoms of anxiety/depression spiraled downward during her first year of college.. and in desperation I contacted one of the experts in this area... who was very gracious in helping us via the Internet.
It is so difficult to find doctors who understand or accept this condition. Our own pediatrican just said, "its very controversial". Well, it may be, but because the symptoms fit, the test results fit, and most importantly, the treatment worked...I believe in it.
There is a new Pyroluria forum opened recently on the Gluten Free and Beyond site. The forum is absolutely free... no ads or anything. I just wanted to let others interested in Pyroluria know about that!
http://www.glutenfreeandbeyond.org/forum/viewforum.php?f=30
Cara
poster:jcc
thread:498689
URL: http://www.dr-bob.org/babble/alter/20070601/msgs/774296.html