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In a message dated 97-01-16 10:20:31 EST, you write:
 
<< Can someone tell me what neuropathy is and what sort of symptoms it
 produces?  Have you been tested in some way?  Does it include muscle
 weakness, cramping, cold hands and feet, spacial difficulties?  What can you
 do for it besides stay on the diet?  Many thanks in advance for any
 information shared.
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 Caroline
  >>
 
I have had my own version of peripheral neuropathy for about three years.
During the first several months, I read everything I could get my hands on.
One of the most detailed sources was a medical handbook in my public library,
so that's probably as good a place as any to get started.
 
As I recall, there are many, many different forms of neuropathy. It usually
affects the feet and/or hands first, then often spreads slowly toward the
trunk. The first symptoms may be numbness or tingling or pain. It's
apparently not uncommon with advanced diabetes, and is often associated with
poor circulation. In these cases, one also will have cold hands and feet. It
can affect the sensory nerves, the motor nerves, or both. Sometimes it
progresses, ans sometimes it doesn't. Reading about the progression is very
scary and depressing.
 
In my own case, I guess I am lucky, because it has never affected my motor
nerves; it progressed gradually for about a year, then pretty much stopped. I
had many blood tests, to see if I had lyme disease, lead poisoning, plus many
other ailments that could contribute to neuropathy. I also had two "tests"
that were very painful and uncomfortable. First was an "EMG" (don't remember
what it stands for) where they stuck 4+ inch needles in my leg muscles and
twisted them until I thought I was probably an unwitting victim of medieval
torture. They followed this up with increasingly strong shocks in my legs and
feet to see how well the nerves were conducting. They were conducting fine.
The results were all negative. The second test was a spinal tap, where they
slowly draw fluid out of your spinal cord, and then see if it contains
protein, etc. The actual insertion of the needle was painful due the pressure
and due to the nerve the doctor nicked when going in and again when removing
the needle. It took about 15-20 minutes or so. Many people get excruciating
headaches that may last for days afterward. Fortunately, I got none. The
results of this test were also negative. At this point they offered to fly me
to Mayo's, but I was not up for more of this type of test!
 
I was never tested for gluten intolerance. No one I saw ever thought of that
as a potential cause. I found out about it on my own by cruising the WEB. I
stopped ingesting gluten about a year after all my tests, and after my
symptoms had slowly progressed to include pain and tingling all the way to my
buttocks. At this point the progression of the symptoms stopped. I still have
lots of pain and discomfort, occasional numbness in my feet, and I have lots
and lots of ways of coping with this mysterious ailment. The neurologists
have no idea what is causing it, and offer no prognosis or even hope. I have
been gluten-free for nearly a year and take lots of supplements. Recently
some tests showed evidence of severe "leaky gut" and probable candida
overgrowth in my intestine. I'm now on Nystatin (antibiotic which targets
yeast in the gut), which I hope may help the healing, if the damage isn't too
severe.
 
Don Wiss has given me lots of information showing links between gluten
intolerance and peripheral neuropathy. If the link is via "leaky gut," (which
seems very likely), then gluten intolerance or candidiasis or both could
certainly be the culprit(s). My own experience is that there is certainly no
immediate, miracle cure just by following the diet and taking supplements.
Others probably have had better luck. However, I remain optimistic and
patient, and I will continue to remain gluten-free (and now, sugar-free!)
because my days before GF were miserable and frightening.
 
Feel free to contact me privately if you want any more information.
 
Mark Evers
Vancouver, WA
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