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still tiredofdoctors

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  • FoOdFaNaTic

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    gluten-free Cooking (!), Sewing, Gardening, Scrapbooking, Research -- I guess I'm one of those "life-long learners"!!
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    Southern Indiana

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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.

  1. still tiredofdoctors
    Hi Joyce, I agree with Gemini -- your doctor is a moron. Shingles is EXACTLY that -- re-emergence of the herpes virus that causes chicken pox. I had re-emergence last year of mononucleosis (only having found out months before because of a titre done that I had actually HAD mononucleosis in the past) when I was changed from IV Rocephin to IV Doxycyclene...
  2. still tiredofdoctors
    I had the same great effects when I chose to let the derm put my son on Accutane. I didn't realize at the time what it was doing to his self esteem -- when I look back at pictures of him, I notice that at the time his acne was so pervasive and inflammed, he did not raise his head for a single picture. It is strikingly different than the others I have. ...
  3. still tiredofdoctors
    Welcome to the board. I was originally a member beginning in 2005, and I can tell you that I have encountered some of the most supportive, kind, intelligent people through this forum with whom I worked through things just like this. I met some very good friends -- and my best friend -- on here. I have been fortunate that my dietary limitations haven...
  4. FoOdFaNaTic started following still tiredofdoctors
  5. still tiredofdoctors started following FoOdFaNaTic
  6. still tiredofdoctors
    I just read through this thread, and at this point I am literally laughing out loud! My son calls us "The Grammar Police"! Being Southern, I can attest that "bless her/your/his heart", at least when referring to an adult, is frequently nastiness made more "palatable"! When regarding children it is more often than not conveying sympathy. It is usually...
  7. still tiredofdoctors
    I agree with Mtndog. It's a definite read. I DID just post on a thread regarding POTS (Postural Orthostatic Tachycardia Syndrome) - the "root cause" of my sero-conversion to true autoimmune celiac. It may or may not be removed, but if it is there, might be worth reading. The prednisone I took for YEARS along with Methotrexate and Enbrel for Rheumatoid...
  8. still tiredofdoctors
    I have had autonomic dysfunction for five years now. I was also diagnosed with celiac five years ago. Two and a half years ago, a cardiologist -- knowing that I have had was was diagnosed as "autonomic heart dysfunction" by her -- decided to perform a tilt-table test. My neurologist attempted to contact her numerous times to coordinate information, but...
  9. still tiredofdoctors
    I agree with Ravenwood Glass -- sometimes the changes ARE amazing. I think you may find, as time goes on, that you will recognize that more of these "subtle" side-effects of celiac resolve. Best of luck to you!
  10. still tiredofdoctors
    I am so sorry that you are going through this. Although awareness of celiac disease in general has increased dramatically since I was diagnosed in 2005, I think the actual understanding of it as an autoimmune disease -- and some of its ramifications -- still has a way to go. I have "Neurogenic celiac" -- or "Sprue-Related Ataxia" -- or "Gluten Ataxia...
  11. still tiredofdoctors
    I've lived a gluten-free life for four and a half years. My antibodies are checked fairly frequently, so I'd say it's less than five. The only liver problem I have had was just recently - I'm being treated for a variety of diseases and developed Mononucleosis on top of it -- it makes your liver enzymes skyrocket. No. Won't do it. The damage it...
  12. still tiredofdoctors
  13. still tiredofdoctors
    Just before I got online, I heard my mother talking with my daughter. She is going BACK to the GI doctor. She has been tested for everything from A to Z. I asked her if she had told the GI doc that I had celiac disease. She said, "No." I said, "Have you been tested for it?" She said, "No." She has the big D all night long -- but didn't disclose to...
  14. still tiredofdoctors
    Kristi -- Thanks for the information! You are the FIRST person who has actually informed me about that. The primary neurologist I saw for the longest time DID note the cerebellar degeneration. The neurosurgeon he sent me to said that there wasn't. I saw another neurologist for a second opinion because my sister -- a workers' comp adjuster - didn...
  15. still tiredofdoctors
    In retrospect, it is hysterically funny that I DID say that to my veterinarian! At the time, though, I was so frustrated, so angry and so TIRED of being treated as though I was a hypochondriac Physical Therapist with too much knowledge. Now? I do laugh that I told him that. Every time I see him with one of our dogs, I say, "Are you willing to take...
  16. still tiredofdoctors
    I had debated as to whether I was going to post this, but as a lot of people know -- I can't control my impulsive fingers! Approximately 20 years ago, I had a friend whose two year-old was diagnosed with Celiac disease. It was confirmed with all three blood tests, endoscope and diet elimination. With ALL OF THAT, the pediatrician diagnosed my FRIEND...
  17. still tiredofdoctors
    I was doing some research re: gluten-free hair-care products. I found an ingredient I didn't recognize, researched it, and found this in the Journal of Pharmacology and Experimental Therapeutics: Open Original Shared Link I found this website that publishes products containing Methylisothiazolinone Open Original Shared Link It's worth looking...
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