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Thanks so much to all of you who responded with your advice and
support.  As I have not yet met a celiac face to face, it helps
tremendously to know that I am not alone in my first efforts to deal with
gluten-intolerance.  I hope that this summary is helpful to anyone else
with peripheral neuropathy or who is struggling in the first few months
of a gf-diet.

One of the most frequent responses I have received is to listen to what
my body is telling me.  There is probably something I'm still eating
that could be making me sick.  If ANY food is suspect, eliminate it for
the time being.  I spent half a day researching everything I've been
eating and found that the insiduous corn tortilla might be the culprit.
Having subsided on the authentic homemade ones during my travels in
Central America, I guess I've been completely naive and unprepared for
the blasphemous versions of tortillas they make in the States!  I tried
to call the company and guess what?  Their number has been disconnected!
I also learned that amaranth is in the cereal I was eating and that some
people react negatively to amaranth.  I'm also trying to stay on as
bland a diet as possible until I start feeling a lot better.

Secondly, I haven't received reports of a clearly defined "detox period"
for antibodies affecting the nervous system, but one person said that
they,too, tend to get cycling of symptoms even after being gf for years.
One reply was that potentially "leaky gut" syndrome could be causing
the peripheral neuropathy, and high IgG antigliadin antibodies are
sometimes the only abnormal sign.  While searching MedLine, I found
a really interesting abstract:

        Hadjivassiliou, M., Gibson, A; Davies Jones, GA; Lobo, AJ;
Stephenson, TJ; Milford Ward, A.  1996.  Does cryptic gluten sensitivity
play a part in neurological illness?  Lancet, 347 (8998):  369-71.

        The good news is that from my personal experience and from the
other articles I found on Medline, the peripheral neuropathy seems to
responding to a gf-diet.  (side note...if any doctor tells you your
peripheral neuropathy is occurring because you're hyperventilating,
put on your tennies and run away as fast as you can!!!!).

Speaking of doctors, many have recommended that I see a really, really
good doctor because I will just be wasting my time and money on all the
rest.  I'm a trained scientist and frankly I'm appalled at how few
doctors I've seen that seem to believe in Occam's Razor (the simplest
explanation is most likely correct...if one accepts the single condition
that an endoscopy may not be 100% reliable then everything else would
suggest a really bad case of gluten-intolerance)  Also, many
pathologists may not be well versed in reading the biopsies and it might
help to send the samples to Mayo or U. of Maryland.  Furthermore,
sometimes 30 samples need to be taken during the endoscopy to detect CD.

Many have warned me that lactose intolerance doesn't just go away in
the first month or so, sometimes it can take up to 2 years, so I need to
hold off on any milk products for a while.

Many have also suggested I might have an additional food allergy.  Since
my symptoms seem to be "mini-episodes" of my previous gluten-sprees, I
still suspect a hidden food source.  Since I've improved after
eliminating the tortillas and cereal, I hope I've found the culprit and
cross my fingers that I'll have some more relief.

Finally, many have written that I would have to ingest gluten again to
have a positive diagnosis.  Frankly, being one of those with peripheral
neuropathy, I feel that I cannot risk doing that again because who
knows what it is doing to my nervous system?  How well I can keep
recovering from these "episodes"?  At this time I think I will be most
happy if I can get a good doctor who could rule out anything else that
might be causing my symptoms and in the absence of all else,
assume I have CD.

Thank you all for your help and advice, I would like to thank all my
responders individually but it will take some time!  I now realize that
I have to really, really back off on introducing things into my diet,
being "simply" gf (if that's not an oxymoron!) is too harsh on my system
right now until it has a longer time to heal.  I also would like to
report that I had enough energy yesterday to do some shopping and go to
the health food store to post a notice to start a local support group
(since I've learned there apparently isn't one in my town)!


Thanks again,

Carrie, IA