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still tiredofdoctors

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Everything posted by still tiredofdoctors

  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. 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...
  5. 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...
  6. 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...
  7. 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!
  8. 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...
  9. 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...
  10. still tiredofdoctors
  11. 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...
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. still tiredofdoctors
    Gemini, I started on this forum back in 2004. I was in denial of "Neurogenic Celiac" until August of 2005. The people who were on this forum were the most loving, kind, caring supportive folks I had ever met. I met my best friend on here. I live in Louisville, KY -- she lives in Ontario, Canada!! The frustration you are feeling is so natural --...
  17. still tiredofdoctors
    Hey -- I actually asked my vet that if I had something the doctors couldn't figure out -- and they were rolling their eyes at me again -- could I come see him for a consultation!! He said, "I can't do that! I'm not licensed to practice on humans!" I said, "Pretend I'm a dog . . . the other doctors treat me like one!"
  18. still tiredofdoctors
    Tiffany, you are SOOOOOO right! Did you know that ten years PRIOR to "people" physicians finally acknowledging that h. pylori causes ulcers, veterinarians were already treating cattle with antibiotics for ulcers? Veterinarians ALSO knew for years prior to "people" physicians that gluten caused gut difficulty AND neurological symptoms. My Erlichia (which...
  19. still tiredofdoctors
    Bea, I have had some pretty awful experiences with physicians. The reason I sero-converted to the neurogenic celiac vs. gluten sensitivity (which I didn't know I had) was because in October of 2002, while hiking in New Hampshire's White Mountains I was bitten by a tick. Evidently, I must have looked like a delicacy! AND a good place for this little...
  20. still tiredofdoctors
    Because of several diseases I have, my MD (prescribed) -- although it is OTC -- Magnesium Taurate. The company that manufactures it has been able to incorporate the benefits of magnesium as well as taurine and compound it into an entirely NEW supplement. I have found that it has really helped the bloating my upper (because of other issues) and lower...
  21. still tiredofdoctors
    Here, here! I agree completely. I posted about my son -- who began experiencing some EXTREMELY similar "gut" difficulties that I had --- but also some neurological symptoms that are VERY new. Thank goodness, he found a GI doc who, when he mentioned that I had neurogenic celiac -- knew exactly what it was and initiated what can only be considered "Project...
  22. still tiredofdoctors
    Roda, I think we are limited as to how many personal messages we can send per so many hours! I just sent one, so I'm cut off at the knees right now! If you would like some information which is a little more . . . ummmm . . . graphic in nature, please let me know via personal message. I am a Physical Therapist, and when I was able to practice, I treated...
  23. still tiredofdoctors
    Given that my reputation somewhat precedes me , I simply tell it like it is. If someone says, "Oh, you have that food allergy." I say, "No, actually, it is an autoimmune disease. Like Rheumatoid Arthritis or Lupus. It is very serious and potentially very dangerous." If they say it is a fad, I say, "Yes . . . Like Diabetes." When I asked...
  24. still tiredofdoctors
    From what I have learned, yeast is a very hardy organism! Even introducing sugars that aren't refined can cause them to proliferate. If there is just one little bugger hanging around, feeding it with any type of "sugar" can cause it to multiply. I am on VERY long-term antibiotics. At one point, my DH and I were passing yeast back and forth to one another...
  25. still tiredofdoctors
    I can't remember which newscast aired this, but researchers have discovered ANOTHER gene that when tested showed significant implication of its contribution to Celiac. I'll have to do more research to find the journal citation. Wish me luck, because I am NOT the master of the internet that Beverly, Karen, Patti, Peter et al are! From what I remember...
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