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Sorry this was my first post and from the responses I
should have been more clear.

I've had celiac for 4 yrs.  After so long I now have a
great grasp on the diet and haven't been "poisoned"
since Feb.

I also have dermatitis herpetiformis, fibromyalgia,
reactive hypoglycemia, paroxysmal myoclonus
(involuntary muscle movements ie. major jerking and
twiches as in seizures) and peripheral neuropathy.

I live in Milw, Wi and am having difficulty finding a
good doc here!  The doc who questionably the quack is
Dr. Conrad Soergal at Froedert  Hospital.  The only
doc that I have ever respected and trusted with my
health in regards to celiac is Dr. Murray at the Mayo
clinic.  The problem is he is over 4 hrs away and I am
on state health which does not pay for out of state
docs unless you go to the emergency room.

The problems I'm having are numbness/burning which
begins in my head/neck and radiates down my back and
arms.  Headaches, sweats, shaking, weakness, hot/cold
flashes, and my jaw jacks.  This started out of the
blue one Wed night and has not let up except with this
neurontin med my doc gave me.  This has totally
stopped my symptoms but when I miss a dose they are
back in full force.  This all began in the middle of
the night while sleeping and woke me up and could not
go back to sleep.  Every night this would happen and
when up during the day my symptoms would lessen and
sometimes go away totally until that night .  If my
night symptoms were less my day symptoms would also be
less but as the days passed my day symptoms would last
longer and be more intense.

My pain doc wants to rule out MS and diabetes, and so
does my neurologist.  But both think it is due to my
celiac but neither knows barely anything about celiac.

  When I told doctor Soergel he did not care to hear
my symptoms and said that since my celiac was in
remission that these problems had nothing to do with
celiac.

In 4 yrs all of my tests came back normal ie.
vitamins/minerals  and biopsy.

Get this, Dr. Soergal also said the only reason to go
on the gluten free diet is to stop my DH symptoms and
not for the internal problems!  This blew me away
since the Dh is nothing compared to the pain and
misery I go through for a week when I get gluten.

I've had DH my whole life but was diagnosed at 24.  I
did not go on the diet until I began getting deathly
ill every time I ate.

Sorry so long, but I hope this clears things up.

Thanks
Melissa in Milw