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I am new to this list.  If anyone has any support I would love to receive
e-mail from them, every day has been a challenge.  I apologize if this
message is long.

Background- I strongly suspect I am gluten intolerant .  Only one of my
antibodies was positive (IgG AGA +, the IgA AGA and EMA were -) and I
took the upper-GI endoscopy/biopsy.   The endoscopy came back
negative and I was told the antibody test must have been a false
positive.  Problem is, I cannot abandon a GF-diet because I
discovered that I get intestinal bloating and excruciating peripheral
neuropathy within 2 days of abandoning the diet.  I've tried to abandon
the diet twice and it happened both times.  The second time was
during the Christmas holiday after going on a 3-day, gluten-loaded
spree (after being told I didn't have CD).

The reason I am writing is, although I feel better on the GF-diet, I am
continuously cycling through this series of "episodes" (which was
much, much more severe when I tried to abandon the GF-diet): 1)
intestinal bloating, with pain in my lower right abdomen (the pain has
occurred with less intensity and frequency recently), sometimes with
"twitching" occurring in my leg and arm muscles, 2) suddenly the
bloating/pain dissipates and I get peripheral neuropathy within
minutes, and a patch of skin on my face feels "fuzzy".  These two
stages are perpetually alternating and each cycle seemed to be a little
less severe (except for today, they all got worse).  At worst each stage
lasts for a whole day.  At best I only experience a half a day here and
there with minimal symptoms and get the two stages over the second
half of the day.

I have not able to get any useful advice at this time from my
gastroenterologist, neurologist, or general physician on this.

1)  Am I "detoxing" or is there a chance I am still eating something that
is causing these symptoms?  The last time I ate anything I discovered
for sure contained hidden gluten was Dec. 31.  The only foods I've
eaten in the past 2 weeks that I think are o.k. but not sure about are
red wine, blackstrap molasses, Woodchuck Cider (Amber), Aztec
cereal, Metranidazole pills?  I seemed to get worse yesterday after
eating the cereal.

2) Or perhaps these are not symptoms of gluten intolerance and could
be something else?  I still wonder if the endoscopy was negative
because out of desperation to improve my health and return to work I
tried a gluten-restricted (not quite gluten-free) diet for a month before.

Currently I'm trying to get hooked up with a m ore knowledgeable doctor
about these bizarre symptoms but in the meantime I'm skinny, worried,
and unsuccessfully trying to return to work.  I'm 5'7", 114 lbs. and
still seem to be dropping weight slightly.

Thanks,

Carrie Morjan
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