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Claire

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Everything posted by Claire

  1. Claire
    Just saying the word 'chills' gives me chills. I shivered (with simultaneous itching) for 10 years before food intolernaces were identified as the cause. Unfortunately, though wheat, barley and rye were identified - gluten was not specifically identified. Just taking away flour saturated foods cured the severe chills and itching - though I continued to have...
  2. Claire
    jerseyangel - I didn't really want what they were looking for but I do want an answer. I have had years without answers and what once wasn't so complicated now has become a tangle of symptoms that may well not all belong to the same entity. One is lucky if the doctors can sort out two things let alone more than that. I will be ordering up the tests...
  3. Claire
    I have to look in my file. I think I owe you a PM. You were going to Venice and I was thinking to wait until you returned - then forgot it of course. I believe that "anecdotic evidence" is about it at this point though I do see hints in the literature that research is either contemplated or in progress - particularly for MS. I will keep looking for info...
  4. Claire
    I gave my daughter a juicer for Christmas. I will let you all know her evaluation of the Omega 8005 - the 8003 and 8005 are the latest In the Omega line. See Dr. Mercola'a website for a review. It is supposedly quiet, very quick and easy to clean, produces very dry pulp and it handles greens which many juicers do not. Omega is very highly rated. Why hasn...
  5. Claire
    Some here on the forum have heard me talk about being tested at NIH this past October. I was being tested for SCA6 - a rare genetic disorder that causes gait and balance problems as well as other neurological issues. They were very thorough - actually testing for SCA6 as well as 8 other possible forms of SCA. The tests were negative. That is good news...
  6. Claire
    Thanks for posting this. Too many on this forum have been lead to believe that the healing process is fairly immediate. It most definitely is not. Perhaps an authoritative statement like this will insert a little reality here. I was given this two year figure as a minimum. Claire
  7. Claire
    All comments here address intestinal damage done by gluten. Why is it that the neurological damage that is real threat to people with Celiac is rarely ever mentioned. Maybe you can, over time, heal a damaged gut but how do you heal a damaged brain? Is gluten worth the risk? Claire
  8. Claire
    To lightbeam: Please do not misunderstand me. I do not mean to be rude but I question doctors as a matter of principal. I am a no longer practicing Rehab therapist so I have some experience also to back me up. You say "The FINALLY I had an MRI and the cause was found--I have MS too" The brain damage done to Celiac patients by gluten looks very...
  9. Claire
    I have had these tests done three times over a period of 12 years - none in the last three years. I would have the test again in spite of the main problem with them which is false positives. It gives you a starting place. When you see your reactive foods list you will immediately agree with some or many of the items that appear. Others will be doubtful...
  10. Claire
    Why am I not surprised at the initial post in this topic? Because I have been there - many, many times. Some doctors are absolute fools! You seem to have found the fool of all fools. Of course they are wealthy fools. I am sure most everything has already been said here. Celiac is not an allergy. Back scratch tests are for allergies. I was told I was...
  11. Claire
    My own experience tells me that healing takes a long time; that food intolerances that you may not have been aware of hinder the healing process. Generally speaking, I think the info put out on intestinal healing is way way optimistic and healing depends on the individual, on contributing factors known and unknown. Being sick is no fun at all and when...
  12. Claire
    I have never ordered from Miss Robins but have bought her gingerbread. It was quite good. She is located 12 miles from here and her stuff is in our new Natural Marketpace. If you live within driving distance they will prepare an order for pickup. Area is Hagerstown, MD. Claire
  13. Claire
    Hi Sande Here is a website for her: Open Original Shared Link There is a phone number and additional info/ Claire
  14. Claire
    I think this is what you are looking for: Hungarian Bakery: If you haven’t had a chance to sample some of Katya’s creations, you are missing out. Katya is the owner of the Hungarian Bakery, which she operates out of her home. She makes wonderful gluten free baked goods including tortes, muffins, cakes, birthday cakes, cheesecake, cookies and more. ...
  15. Claire
    EdenSoy has a rice/soy blend that clearly states gluten-free. Claire
  16. Claire
    There are differences of opinion regarding food intolerances. I will share my experience for what that is worth. 15 years ago I went the 'testing' route - this after 10 years of total misery with no medical help. Traditional skin allergy testing had shown that I was not allergic to anything! These tests were done by Immuno Labs and identified a...
  17. Claire
    I realize this isn't funny - I have experienced the same thing. I have this mental picture of this little 'Immune System guy" who is looking around for some gluten to attack and not finding ending thinks - "Oh gee, now I can go afterl all those other things I didn't have time for before!!!!!!!! Unidentified reactive foods may still be an issue. I know...
  18. Claire
    Thank you all very much. It seems that gluten sensitivity is not taken as seriously as Celiac - though the damage can be just as devastating - in fact more so. The intestinal lining will heal. A damaged brain will not. For people with gluten induced brain damage the best to hope for is that the process can be interrrupted and halted. Claire
  19. Claire

    ARCHIVED Pa Restaurants

    Claire replied to Jamielee's topic in Gluten-Free Restaurants

    Don't know of a PA location for Carrabas (specializes in Italian food) - this is owned by the Outback people as is the Bonefish Grill. If anyone knows PA locations for any one of these three please post. Thanks. Claire
  20. Claire
    I am looking for a Lab that does genetic testing for Gluten Sensitivity. I do not have Celiac. I need a lab that will be covered by insurance. Thanks for help. Claire
  21. Claire
    I have a recipe for scones that calls for, among other flours, corn, almond or bean flour. I cannot eat any of these flours. Any ideas what type of flour to substitute? Would buckwheat or brown rice flour be comparable> Thanks for help. Claire
  22. Claire
    One more reassurance. I will be having my third test very soon. It's a lot better than a mammogram! Totally painless - you are lying down all the time (in different positions). It takes a half hour or more. No big noise like the MRI. Go for it! Claire
  23. Claire
    Consider also that what is being described here by so many may well be an ataxia. Ataxia is a neurological disorder caused by damage to the cerebellum - the part of the brain that controls gait, balance, swallowing, speech, etc. . It can have many causes but is found in both celiac and gluten sensitivity patients. Those with gluten sensitivity appear to be...
  24. Claire
    I know just how you feel. If I had to have anything I really wanted it to be celiac. It sounded a whole lot better than the other possibilities I was being threatened with!!!!!!! I too was tested by Kimball. Unfortunately they do not do the 'gluten senstivity gene' test. That is the next thing I have to do. You too, perhaps. Claire
  25. Claire
    There is a lot of research info on the internet that claims gluten sensitivity and celiac to both be lifelong conditions. I personally consider these to be two sides of the same coin - very subjective. I do not have celiac. I have not yet been tested for gluten sensitivity. I do have a diagnosis of Type II, Delayed Food Reaction to wheat, barley and...
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