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tiredofdoctors

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by tiredofdoctors

  1. tiredofdoctors
    Thanks, Claire! It's true, having loving, supportive people around you is probably the most important part of all this. Last night, my husband went out to get ice cream for us -- checking the labels so that I can have each kind -- because we only had Gluten-containing junk food here! Touche' with regard to the pizza! I really do think that I have a...
  2. tiredofdoctors
    The fact that you're making gluten-free brownies for your girlfriend scores HUGE points with me! Maybe I can shed some light on why your girlfriend is doing what she's doing, because I'm doing the same thing. I don't have Celiac, but I have been diagnosed with Gluten Ataxia. Basically, the antibodies to gluten, combined with some other antibodies, are...
  3. tiredofdoctors
    Dear Mel, I was very lucky that, through a web of multiple specialists, I was referred to a Gastrointerologist who was empathetic, kind and thorough. I saw him on a Thursday, he did the bloodwork for Antigliadin antibodies, Antiendomysial antibodies and Antitransglutaminase antibodies that day, and scheduled my small intestine biopsy for the next Wednesday...
  4. tiredofdoctors
    Hi Guys -- Claire, thank you for the info about the blood test -- my doctors are finally listening to me, and I feel pretty certain that one of the two of them will order it. Also, good luck with the Frenkel's exercises. My biggest problem is that I have about 12-14 minutes in which my muscles will function prior to turning to jello -- it's just not...
  5. tiredofdoctors
    Great info -- thank you. I, too, am a medical professional -- I am hoping that someone out there will have developed alternate neuropathways in the cerebellum which restores normal function. There are exercises "Frenkel's Exercises" which were developed in the late 1800's for patients with Parkinsons -- they are also used for patients with ataxia, but very...
  6. tiredofdoctors
    Reflex Sympathetic Dystrophy is a condition in which they sympathetic nervous system goes into "hyperload". It really isn't the same as fibromyalgia. The earliest written cases of RSD were during the Civil War -- it was known then as "Shoulder/Hand Syndrome". Soldiers who were shot in the shoulder would have this irretractible pain in their arm and hand...
  7. tiredofdoctors
    Thanks for all your input. I read the biopsy of the intestinal villi -- they are pink, healthy, and plump. B12 levels are great -- I just had them checked again. I've tried chiropractic, as well -- no luck there, so far. My biggest concern, I guess, is whether the ataxia and neurological pathologies in my muscles are reversible. If you stumble across...
  8. tiredofdoctors
    I have been off the Celiac forum for several weeks. I am pretty frustrated. I have no antiendomysial antibodies, no transglutaminase antibodies, and my small bowel biopsy was negative. Hence, no celiac disease. The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum. I...
  9. tiredofdoctors
    Marianne, thank you VERY much. As one of my topics stated, a second eye doctor was the one who was critical in facilitating the blood tests and the scope. He also said that I needed to have much more blood testing. I told him that I had had 37 immunological tests. His response was -- not that -- I think you need genetic testing. I'm oddly comforted by...
  10. tiredofdoctors
    Thanks for the advice -- talked to my neuro -- he still wants me to go gluten-free, so you're right on the money. There are worse things that being gluten-free: namely, not being able to walk, talk, or move. I hope that it makes a difference. At minimum, I hope it keeps the destruction from continuing. I'm already in a wheelchair. I'm still going to...
  11. tiredofdoctors
    Well, the testing is over -- blood tests negative, and the small intestinal villi look perfect. The GI surgeon said there is no way it's celiac. I was REALLY hoping that this was the answer. Now we still don't know what's destroying my brain and spinal cord. My neurologist wants me to go gluten free to stop the antigliadin antibodies (they're 1.1 units...
  12. tiredofdoctors
    I am totally in the dark with regard to the links of celiac disease and ADHD. I do know, however, that Vincent's information with regard to the need for neurostimulants is correct. If found early enough and treated, children with ADHD have a chance to have their reticular activating system (the portion of the brain which affects ADHD) jump-started, often...
  13. tiredofdoctors
    That is REALLY interesting. My mom was telling me about when I was young -- I had diarrhea ALL the time, but they thought it was because of all the antibiotics I took. She said that they put me on a diet of jello, bananas, baked boneless, skinless chicken breast and rice for three months in order to get my GI tract "calmed down" -- Celiac diet, or what...
  14. tiredofdoctors
    This one is for the books. I went to my ADHD doc for my check-up, started crying about this stupid cerebellar disease among other things. Told her about my blurred and double vision, despite buying some VERY expensive new glasses (which, after all this medical stuff, we can't afford) because the doctor said that my prescription was to blame. Turns out...
  15. tiredofdoctors
    This one must have escaped me, if I'm a celiac. I had all the classic gut symptoms throughout my childhood, but I'm a 6'1" female!
  16. tiredofdoctors
    I'm sorry your dad acted out toward you. I know that in some experiences with my own parents (I had a broken clavicle that was never diagnosed. Prior to surgery, the MD asked my mother at what age I had fractured it -- she said that I had NEVER had a "broken collar bone" and she would have known it if I had, and was SOOOO defensive.) Perhaps your dad...
  17. tiredofdoctors
    Thank you guys SO MUCH. I have gone completely gluten free -- with little or no decrease in my neurological symptoms. I will re-introduce gluten into my diet until I have the biopsy. That was fantastic advice -- thank you very much. For jknnej --have you had antibodies tested for your thyroid? I had a goiter from the age of 12 or 13, but no one tested...
  18. tiredofdoctors
    Thanks! I'm sorry you're having so much trouble, as well. The majority of the studies which I have read indicate that the antigliadin antibody has a high false positive rate -- I believe there are antiendomysial and anti(something!) which are more expensive, but more accurate. I'm having another brain MRI this week -- if it's negative, I'm going to have...
  19. tiredofdoctors
    Thank you so much for that information. I have so many severe neurological signs -- I'm a physical therapist, had my own practice, but had to close down. I only worked about two days (cumulative total) per week for months, but finally had to realize that I was worse off than my patients. I have been really frustrated about the non-chalant "come back in...
  20. tiredofdoctors
    Hi --my name is Lynne and I am fortunate that I have finally found a neurologist who is proactive with diagnosing my condition. I have read as much as I can about Celiac symptoms, but I have some pretty disturbing symptoms that haven't been mentioned. Has anyone out there experienced a combination of extreme fatigue, blurred and double vision, ataxia...
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