<<Disclaimer: Verify this information before applying it to your situation.>>

Yup - type 2 that came on after shingles and a series of medical treatments 
where I had to go off my anticonvulsant meds (Triliptal mainly) for the 
treatments.  Once I was back onto it the pain went away - which was on the left 
side of my face.  I am already on a higher dose of a Fentanyl Patch ( 
Fentanyl is 8 times more powerful than morphine) and that did not touch it - only 
going back on the anticonvulsant which was originally being used for pain 
treatment of my peripheral neuropathy from a spinal injury.  I do not have 
epilepsy.

I hope that helps!  

Please do not post my name associated with this if you are going to post 
this information.

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Wow, I too have fibromyalgia as well..are you on Lyrica for that?  I am 
taking that as well and Vicodin with that..I guess between the 4 meds I am 
managing most of the pain.  I had heard that there is a surgery that can be done 
to alleviate the problem as well..my girlfriends dad had done it and he 
lost his pain..it was done
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Wow, I am amazed that someone out there has this nasty disorder as well!  
It is horrible and painful and I am still trying to get mine under control 
after 8 months after diagnosis.  I am on an antiseizure med as well as 
baclofen for a muscle relaxant.  How are you treating yours and are you having any 
success?  Not sure this is related to Celiac Disease though.

Yes, I have been diagnosed with this painful condition.  You and I wrote 
back and forth
years ago about "problem teeth".
I was sent to a "pain doctor" who truly spent time trying to help this 
condition.  He
began with neurontin (very difficult at that time to confirm the generic 
was GF, but finally did).  I was started with 100 mg and was told it was a 
starting "baby" dose.  After taking it I had difficulty navigating up the 
stairs and after sitting for a while I fell onto the floor.  I could feel it 
happening but couldn't do anything to stop the reaction.  Doctor told me he had 
patients on it at 1400 mg. but plainly my body couldn't tolerate it.  Second 
med he suggested had a usual side effect of memory loss so I opted not to 
try that.  
Gave the Rx. meds up and live with it---it is  now intermittent.  I protect 
my face from the cold and drafts as much as I can and get some help from 
Advil.
 
I lost a number of teeth until I learned all dental pain is not from decay 
and infected roots. Some times it is just there and the dentist can't "fix" 
it.
 
I hope you find a medication that helpa
++++++++++++++

I have known two celiacs who had trigeminal neuralgia. One had an 
operation in Edmonton, Alberta, Canada, in which a neoprene sheath was 
used to surround the trigeminal nerve. it worked quite well and she had 
substantial relief from her problem for the several years I was aware of 
her. (Her son was a friend and colleague.) The other celiac with 
trigeminal neuritis endured considerable pain. She stopped eating dairy 
products but got no relief from that. She got ELISA testing for common 
food allergies but I do not believe that she ever eliminated all the 
foods that were identified as problematic. She would briefly follow the 
diet then say it wasn't helping and go back to eating  what she wanted. 
She was elderly and died from other causes the following year.

I'm not sure if that is the kind of information you wanted but I hope it 
helps.
++++

have the atypical type -- 3 month long migraines, instead of facial 
sensitivity. But going gluten-free all but eliminated it. I get the 
occasional episode, but it's much shorter, and it's rare.
+++++

I have had it and I can almost still feel the pain 30 years later.  
Recently I saw a 60min segment about a woman who had it so bad she was on tons of 
pain meds and was totally miserable.  Her doctor cut a small square of felt 
fabric and wrapped the nerve.  WaLa, the pain is totally gone.  You may want 
to look for that segment of 60 Min.  It was very recently, maybe two, three 
weeks ago. 


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