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Claire

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Everything posted by Claire

  1. Claire
    I was going to start a new topic with this post but it is definitely related to the subject in this thread - If you want a new topic, I can do that too. This is an excerpt from an article 'FOOD TOXINS, MOLECULAR MIMICRY, LEAKY GUT AND THE MS CONNECTION' Though it is directed toward MS - there is much here for the celiac to digest. This is a great...
  2. Claire
    I do have good luck with Nioxin - not so much restoration as preventing further loss. The loss has diminished dramatically since starting with this product. I cannot say I am comfortable with it and am actively looking for a gluten-free 'close second' is there is one. I will post anything on the subject i find. Hugs for Ella. Claire
  3. Claire
    Many labs do this work. My tests were done by Immuno Labs, Fort Lauderdale, FL Order IgG Immuno 1 Bloodprint (IgG Elisa Food Sensitivity Assay) 1-800-231-9197 Look back and read earlier post on this issue. Claire
  4. Claire
    You are a 'researcher' after my own heart. I so wish people would read more, search more - there is so much to learn. I took L-glutamine for a year and when the subject of endoscopy came up I was told to forget it - that in a year any evidence of intestinal damage would be gone. As I have been on a gluten restricted diet (not free) for 15 years...
  5. Claire
    Check out the Going Overboard thread that appeared Friday. There is discussion there and in other threads as well on this topic. The jury is still out on this subject. Read it carefully, search the threads of the subject of topicals containing gluten. I have not yet given up Nioxin. I am very careful with it - wash hands thoroughly during each step of...
  6. Claire

    ARCHIVED Itching...

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

    My 'history' began with dermatographism - a rare skin disorder that causes deep welt like ridges in the skin and the skin retains marks for hours. It also itches and sometimes turns very red. Details of this are unimportant for this post except to lead into a response to your question. When this weird stuff went away I began a 10 year long nightmare of itching...
  7. Claire
    I know I have documentation (somewhere!) for what I say here. I think you are getting bad advise regarding "She told me I need to experiment elminating the different foods and that just b/c I am highly reactive to one food, doesn't mean its actually harming me." If your immune system is being stressed then you are doing yourself harm. Look up the subject...
  8. Claire
    Doctors as well as patients get the wheat and gluten thing mixed up. Gluten is a protein found in wheat, barley and rye. The protein of oats is different but must oats in the US is too gluten contaminated to be safe to eat. Gluten is used in thousands of common products. I saw the other day a statement that 90% of the food in the supermarket contains gluten...
  9. Claire
    And a good heads up it is. This is such a great example of how little gluten it takes to effect a reactive individual. Hopefully this will be read by everyone on the forum who tends to be of the 'just a little bit' persuasion. Claire
  10. Claire
    Open Original Shared Link I was trained in a pilot program for OT/PT. I came to that as an undocumented Recreation Therapist - long story there. The Occupation and PhysicalTherapy training has a lot of overlap so this was a wonderful concept- one well received in the Rehab community. However there was a lot of politics in the national organizations that...
  11. Claire
    Hi George. Thanks for the message. What you say about Kimball is true of course. I must admit to trying to do this 'on the cheap' I can get insurance coverage for Kimball and not for Enterolab. I know I have a gluten problem. The grain issue was found a long time ago. If this test does not show DQ2 - DQ8 markers then I know the issue is sensitivity. ...
  12. Claire
    I said I would tell you about the neurological testing experience at NIH. I had the great NIH excursion yesterday. It was, as I expected, the medical version of the Inquisition. Initially you read and sign all the paperwork that acknowledges that you are now a research subject. I was questioned endlessly --first by individual interviewers, then by the...
  13. Claire
    Not being much into alcohol this post prompts a question. Aren't scotch or bourbon (or whatever you like) grain based alcohols. I know fruit based alcohols are okay but I thought these were not. Claire.
  14. Claire
    This disease can wreck your life if you don't COMPLETELY change your earing habits. No cheating - no "just this once". How do I know? I have not yet been diagnosed as Celiac. I have a diagnosis of spinocerebellar ataxia - in English that means the brain is damaged in an area related to motion, balance, swallowing etc. We know that gluten has played...
  15. Claire
    Your story and mine quite alike except my symptoms were different and it took, for me, a lot longer than ten years. I got half way there in 1990 when I was diagnosed with the Type II, Delayed Food Reactions - to a whole lot of food but to all grains except rice and oats. It was 1990 - no mention of gluten. So I cut out bread and most everything with flour...
  16. Claire
    Me again. I hope I didn't leave the impression that I am against testing for celiac disease and or non-celiac glutem sensitivity. I am absolutely passionately opposed to the gluten challenge. If either of these two conditions are present, the body is being damaged with every grain of gluten consumed. Not a very wise way to test for anything. I do believe...
  17. Claire
    Not a bad article but as usual the focus is on the GI symptoms of celiac. There was no mention here of the disabling neurological damage that is the symptomolgy of many with Celiac and with non-celiac gluten sensitivity. I provided info to my GP who was astounded - never knew there were any neurological implications - it was a tummy and D thing! Claire
  18. Claire
    Plenty of reaction to this thread! What can I say? Grrrrrrr! The question disturbs me that much! I am one of a few people on the forum who have the neurlogical damage done by gluten - see posts by tiredofdoctors. Gluten attacks your cells - any cells and promotes the development of autoimmune diseases - meaning that the body's immune system is attacking...
  19. Claire
    So true. That stuff is everywhere! I think you will find, as time goes on, that the temptation diminishes. If you give in to the temptation you may find that the forbidden food doesn't taste nearly as good as you anticipated. It is like being on a restricted salt diet. You get something that is salty and it tastes terrible! - not at all like the wonderful...
  20. Claire
    Glad to hear another voice for gluten-free - not just a little bit gluten free. It must be a total withdrawal from this poison. It is that you know - for those whose are sensitive to it. Those numbers will continue to grow as technology messes with the basic nature of foods and as we move to a diet that is saturated with gluten modified products. By that...
  21. Claire
    I wish these messages came with sound- then you could hear how loud I am saying - a gluten challenge is a bad idea. You are probably on the right track, already helping yourself and now you will be undoing any good you have done. If you do have celiac disease you are doing harm with every grain of gluten you ingest. Enterolab is a way you could go - no...
  22. Claire
    Skip the GP. Remember that even specialists have limited vision and think within the box of their own speciality. It may take more than one specialist - that's not uncommon. Claire
  23. Claire
    You may get different answers to this because different people here may have been told different things. I was told todayby a neurologist that this varies from person to person and that some symptoms disappear in weeks and others take many months. No hard fast rules here. Feeling bad initially is not unusual - after all gluten is addictive for many people...
  24. Claire
    Does sound funny I guess. Are you asking for a serious answer: Silent migraine is a migraine attack without any pain - called acephalgic migraine. These do have symptoms and these do vary. Sometimes there is the aura, there can be dizziness and nausea (in the extreme in some cases). There is also a silent migraine that primarily effects vision - very disorienting...
  25. Claire
    Hi - there. To this question: I do not think so UNLESS you suggest possible celiac. Then they will look closely for cicades changes and nystagmus. I have serious eye problems caused by a negligent surgeon so my vision gets intensive scrutiny yet changes in cicades and end point nystagmus was not picked up until observed by a neurologist. Both of these conditions...
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