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

Thanks to Roy Jamron for the very helpful Medscape links on celiac disease.  Of particular interest to me was the section on neurologic disorders that affect 7-10% of diagnosed celiac patients.

I saw a neurologist last week after several weeks of severe burning pain in my feet and hands occuring simultaneously with a lot of strange buzzing and shocking sensations since last February.  The pain has been bad enough to keep me from sleeping and caused my muscles to bunch up, which caused more pain and stiffness, and loss of mobility (made me walk around like Frankenstein, unable to unflex my ankes).  I have had muscle spasms, strange tics, and a big loss in the ability to get through my normal gym workout.  I kept going in, but had to decrease my efforts by more than 50% in weights and 75% in time on cardio equipment.  I felt deep fatigue, so much that working out precluded my doing much else for the remainder of the day, and I had a painful slow recovery each time.  I was too sore to work out again for 3 of 4 days, and the fatigue persisted.

My neurologist did some tests with pins, and checked my response to cold sensation,  making note of when the sensations changed as he moved from one area of my foot up my leg, and did some other general neurological tests.  He has scheduled me for some sort of nerve path test I can't remember the name of, but it involves being stuck with needles and receiving little shocks to see how I respond.  I don't want to know too much about this one until it is over, however, and prefer not to think about it until I have to. He did say I showed strong evidence of neuropathy, and although he couldn't exclude multiple sclerosis, neither could he diagnose it since one of the criterion for MS is that there be no other possible reason for neurological symptoms, which lets anyone with CD and Graves' disease (which I also have) off the hook, since CD has such a high incidence of neurological manifestations, and Graves' has a very low incidence of antibody attacks on the nerves, but it still exists.

Last Thursday, he put me on a trial course of Neurontin, which is a drug used to control seizures.  Although it isn't specifically designed to relieve neuropathic problems, it has been found to be very effective, and very safe.  Its main overt side effect, for me, has been sleepiness which is very welcome at night, and relieved by a cup of coffee a couple hours after each of the two daytime doses.  I can't believe how much better I feel since I have been on it.  The pain is reduced by about 95% so far, and I am already back up to the amount of weights and nearly up to my previous cardio time before the "attack" in early February. I can also work around the house during the day without getting overly tired or that sick feeling you get from ignoring pain all day.

 I want to recommend that anyone with celiac disease who has strange pain, or other neurologic symptoms such as ataxia (unsteadiness on one's feet) ask for a referral to a good neurologist (mine had just given a talk that included a piece on gluten sensitive enteropathy and its neurologic manifestations!).  My family doctor was unable to do anything to help, and merely smirked at me and told me to take Advil when I asked if there wasn't something I could take for pain.  Presumably, she thought I wanted some sort of pain killer, but I had heard that Neurontin, which is not a pain killer or a narcotic in any way, could help a lot. She didn't know anything about it. That is why I asked to be referred to a neurologist.  I have literally been given a huge chunk of my life back, and am nearly functioning at a normal level now.


Kit Kellison
Activism Chairman
Tidewater Chapter #71
CSA/USA


---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - File online, calculators, forms, and more

*Support summarization of posts, reply to the SENDER not the CELIAC List*