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On Sat.Sept. 9th. Tina Chandler said:
Any information concerning your experience with arthritis and possible
connections to celiac disease is appreciated.  Suggestions for RELIEF would be
greatly appreciated!  Also any information about Celiac disease as auto immune
disease(not sure exactly what that means) is welcome.
 
I planned on sending a private message to Tina but Linda Jones also was
looking for info on Fibromyalgia so I decided to post it to the list.  Maybe
it will help others also.  I would be interested to know how many others
are diagnosed with Fibromyalgia  If you send a note to me I will get a count
and let the list know.
 
I also went undiagnosed for 37 years.  I was told as a child it was Colitis
and IBS but looking back I'm sure it was Celiac.  Seven years before being
properly diagnosed I developed another auto immune disease called Interstitial
Cystitis (IC).  It is an inflammation of the bladder wall which causes severe
pain.
 
When I started losing a lot of weight from the Celiac it still took 2 years to
get a diagnosis.  I guess with all my other symptoms I was a real mystery to
doctors. Anyway, I also started experiencing muscle pain in my arms, legs and
neck.  I was diagnosed with Fibromyalgia and put on Elavil.  I too feel this
is totally unbelievable that I have 3 chronic conditions.  I don't even tell
people because I'm sure most would not believe me.  Anyway, I was finally put
on a gluten free diet and my Celiac symptoms greatly improved but it
did not help with my other symptoms.
 
I tried conventional and holistic medicine.  I went to Chiropractors, tried
Acupuncture and Acupressure.  Two years ago at age 40 I was working, raising 2
children and in a great deal of pain.  I was told to try Biofeedback for my IC
and since I tried everything else I decided to give it a try.  I don't
remember when the neck pain stopped.  I would guess within the first 3 to 6
months.  I rarely get the pain that I felt in my arms and legs (still
experience burning in my legs).  The IC is much better but I still struggle
with it.  I think it is very rare for someone to spend two years in
Biofeedback but it is working for me so that is exactly what I did.
 
If anyone wants more info you can E-Mail me privately.  Hope it helps.
 
Ginny
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