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Claire

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Everything posted by Claire

  1. Claire
    Thanks so much for this reply. I started this topic and am most grateful to hear from you. I live in Chambersburg, PA - about an hour away from Gettysburg. I will contact you. Claire
  2. Claire
    It's nice to have a place to ramble, isn't it? Have you read a post that I put up about what my neurologist said about gluten? Essentially what he said was that gluten should come out of the diet of any patient with a neurological disorder - regardless of the diagnosis. He went on to say that it definitely mediated in cases of MS, Lupus - also fibromyalgia...
  3. Claire
    Contrary to public opinion. dementia ia rather uncommon among the elderly. I worked with the elderly for several years and know for a fact that much of the confusion and disorientation that we see is drug induced. In one facility where I worked a psychiatrist called in to do evaluations refused to do so. He said he would come back in two weeks if all the...
  4. Claire
    Villi are visible - don't need 'scrapings' if you can determine the condition of the villi from pictures. Claire
  5. Claire
    that is strange - medical reviews have been very positive. I will see what else i can find about it. My daughter said it was recommended to her friend as the most comprehensive test available. Hopefully your doctor isn't like some around here who take at least 10 years to accept something news. Claire
  6. Claire
    Yes diary symptoms could be the same as gluten. Even other foods that trigger reaction can produce the symptoms you have associated only with gluten. I have a specific gluten reaction - but I have had it a few times when I know there was no gluten - eating at home - nothing different. I have intestinal reactions to some of my no-no foods and some to gluten...
  7. Claire
    Sorry I got a name wrong. Tiredofdoctors - not nofaithindoctors. Claire
  8. Claire
    Me too. I stagger most to the left, don't really weave much and so far have not fallen. My issues are complicated by a serious eye problem caused by a negligent surgeon. This effects depth perception and convergence. Now the ataxia has nastagmus on the sidebar so that just makes bad matters worse. Ataxia - from almost any cause - certainly looks a lot like...
  9. Claire
    That certainly sounds like a therapist's dream. You did get to do it - even if not for the long haul. Stop and think real hard. Is there any way you can reconstruct the dream? You wouldn't be able to do it alone but with another dedicated therapist and you as a guidiing hand you might still be active in helping others - and yourself as well. Claire
  10. Claire
    I wonder if it beats swallowing a tube. They say this is no small pill. Claire PillCam Can Help Doctors Diagnose Gastrointestinal Disorders Open Original Shared Link
  11. Claire
    In my case it did not. No indication in anything that I have read that this neuropathy is any indicator. Many people with ataxia do not have neuropathies at all. Claire
  12. Claire
    The following is an excerpt - source is at the bottom. Claire from: Alba Therapeutics initiates trial in celiac disease Alba Therapeutics has begun testing AT-1001, an orally administered zonulin receptor antagonist that is being developed for the treatment of celiac disease. The double blind, placebo controlled dose escalation study will evaluate...
  13. Claire
    I am adding this excerpt to what I have already posted on this subject. This is a very good article - something to give to newly diagnosed celiac patients and to family members etc. The website source is listed below. Claire Is AT1001 the Answer? (from Celiac Disease: Living Gluten Free) Alessio Fasano, MD, was recently appointed director of...
  14. Claire
    It looks like celiac and type 1 diabetes are the initial candidates for study but the implications are related to all autoimmune diseases. Keep watch - I am posting additional information and comments. Claire
  15. Claire
    Cheers! Reread Bobcatgirl's post more than once. You have to take charge if you want to win the battle. What's the worst thing that can happen if you challenge a doctor? He can tell you to find another doctor. Now that's not such a bad idea! Claire PS - you say you can't walk? Is this ataxia?
  16. Claire

    ARCHIVED Kinnikinnick

    Claire replied to Claire's topic in Coping with Celiac Disease

    Our local health store just starting with gluten free foods. Likewise local Giant. No Kinnikinnick anything, Whole Foods may have something - will see when I go again. I don't care about bread/ Woud; like to find a good scone. Claire - Canadian born, now in PA.
  17. Claire
    Hi again - think you are right. What I put up is a about the same 'drug' you are thinking of. Here are some interesting sites on the subject -- one is an earlier date and one is dated in the last few days. RESEARCHERS FIND INCREASED ZONULIN LEVELS AMONG CELIAC DISEASE PATIENTS Open Original Shared Link (several years old) Some Random Thoughts on Zonulin...
  18. Claire

    ARCHIVED Kinnikinnick

    Claire posted a topic in Coping with Celiac Disease

    I read here so many people buying from Kinnikinnick. I went to the website and found that they are not compatible with Mac computers. They say you can use a basic version but I found that I could not. It wouldn't allow me to do anything. Quite amazing. I have had a Mac for years and years and never encountered a website I couldn't use. Too bad...
  19. Claire
    Once upon a time I could have explained this far better but I am removed by years from the technicalities of things like this. Simply put there are receptors on the cells - little guys that are there in take in 'their' stuff when it arrives on the scene. If the receptor for gluten was somehow fixed so it didn't recognize gluten then 'perhaps' the reaction...
  20. Claire
    I do not think this is the same one but I am not sure. I only found this last night and I will be looking into and get back to the thread if I find out anything more. Claire
  21. Claire

    ARCHIVED Energy Please.

    Claire replied to lorka150's topic in Sports and Fitness

    Just another vote for CoQ10 - 200-400 mg per day. Claire
  22. Claire
    Some of you may have seen this. It is in the Celiac.com newsletter under Celiac news items. Alba Therapeutics Announces Phase I Trial for Zonulin Antagonist AT-1001 Alba Therapeutics Corp. today announced that it has begun first human dosing of AT-1001, an orally administered zonulin receptor antagonist that is being developed for the treatment of...
  23. Claire
    Have you tried him on the Tinkyada pasta. Thanks to this group here I just found this and it is very good. I find it needs to be cooked longer than regular pasta to get it to a nice el dente. Sorry to hear that your husband or anyone would not go gluten-free if they know they have Celia. Does he not realize what can happen to him down the road if he...
  24. Claire
    Hi - I guess you went 'back on gluten' so you could be tested. This may work for you but it is a tough way to go to get test results. The damage - both seen and unseen - that is done to the body by just a grain of gluten is so significant. Do get back gluten-free just as quickly as possible. I know whereof I speak - have gluten induced neurological damage...
  25. Claire
    Another curious. Pamela's are labeled gluten free, no gluten containing ingredients on the label and sold in the Gluten Free section of my Health Store - likewise at Whole Foods. Is someone making the buckwheat mistake here? Claire
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