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still tiredofdoctors!

Member Since 11 Oct 2008
Offline Last Active Apr 12 2010 05:46 AM
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About Me

I was diagnosed with "Sprue-Related Ataxia" in January 2005. it is now called "Neurogenic Celiac"(!) This was while I was developing several other autoimmune diseases, including what we now know is Rheumatoid Arthritis, Hashimoto's Thyroiditis, Sjogren's . . . and then a trickle down from there. That includes Raynaud's, Autonomic dysfunction - including autonomic bowel dysfunction and autonomic heart dysfunction, occulomotor apraxia, oromandibular dystonia that turned into multi-focal dystonia, malabsorption syndrome, and then I eventually epilepsy.

What we NOW know is that it all started from a tick bite I sustained when I was in New Hampshire in October 2002. I developed four tick-borne diseases including Lyme, Babesia, Bartonella and Erlichia. My physician said that the neurogenic celiac should coupled with other autoimmune diseases should have raised red flags with ALL of my physicians. It seems that a "watershed" of autoimmune diseases accompanies chronic Lyme.

I had an MRI 9 months after being incredibly dedicated to living a gluten-free lifestyle in August of 2005. Since that last MRI, there is no detectable cerebellar degeneration. Prior to that, each MRI would show continued degeneration. I will not EVER ingest anything that I know contains gluten. I also am INCREDIBLY careful about the places in which I choose to eat.

Community Stats


  • Group Advanced Members
  • Active Posts 85
  • Profile Views 6,151
  • Member Title Advanced Community Member
  • Age 52 years old
  • Birthday March 31, 1962
  • Gender
    Female Female
  • Interests
    gluten-free Cooking (!), Sewing, Gardening, Scrapbooking, Research -- I guess I'm one of those "life-long learners"!!
  • Location
    Southern Indiana

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