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sylviaann

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Everything posted by sylviaann

  1. sylviaann
    I have Ulcerative colitis (12 years) and I tested negative on two occasions for Celiac Disease. My current physician is a Celiac Specialist. She knows that there is a "Spectrum" of Gluten problems ranging from mild sensitivity to full blown Celiac Disease. Many patients fall into the category of "NO Man's Land", meaning they test negative and thye go back...
  2. sylviaann
    Your feelings are totally normal and I have felt your pain and frustration (I still take one day at a time). After suffering repeated "glutenings", I found myself eating mainly unprocessed food. The only safe snack product I eat is called RiceWorks brown rice chips (plain with sea salt). You can find them at Costco or Wal-mart. There are so many products...
  3. sylviaann
    I would strongly suspect the Trix, the coffee, and possibly the chicken. I had no idea that Trix was a gluten-free product..is that a recent development? Mainstream food companies have high potential for product cross contamination because they produce so mnay different products on the same production line. They clean the production lines in between runs...
  4. sylviaann
    Does anyone know of a basic over the counter gluten-free nasal SALINE spray (no prescriptions) that has been confirmed by the product manufacturer, that there is no CC possibility (i.e. CC potential from raw materials purchased from ouside suppliers? I was using "Ocean" brand but their FAQ page indicates that they cannot guarantee it is totally safe...
  5. sylviaann
    I react to the slightest amount of gluten and recently decided to eat all unprocessed food to steer clear of any possibility of gluten ingestion. Recently, I purchased three bags of dried beans marketed by a major grocery chain in Florida (their generic brand). I decided to contact the grocery store's corporate office to make sure there were no cross...
  6. sylviaann
    Hi there! Which gluten grain alcohols can you safely tolerate?? Did you tell me in a previous post that you could tolerate Bacardi regular rum?? Are you able to tolerate any wines?? I drank 2 glasses of white wine last night and my neuro symptoms (periodic limb movement at sleep onset) occurred. I am keeping a food/medication/cosmetic diary and normally...
  7. sylviaann
    As many of us have encountered major challenges finding gluten-free cosmetic products, I need some suggestions. It took me six months to truly discover that a gluten-free shampoo and conditioner can have hidden gluten in the product's Fragrance. When I was a gluten-free rookie, many product manufacturers would advise me that their product was gluten-free...
  8. sylviaann
    FYI..Most Boost nutrional drinks are gluten-free EXCEPT the chocolate MALT. If you read the side of the bottle, make sure it reads gluten free ad lactose free. Sylviaann
  9. sylviaann
    Hi there, A Celiac Speciialist is a Board Certified Gastroenterologist (GI doctor) who has specilized in diagnosing and treating patients with Celiac Disease, gluten sensitivity, and gluten intolerance. There are a limited number of CS in the United States. My doctor is located in Atlanta and I was blessed to meet her eleven years ago. I lost approximately...
  10. sylviaann
    I used their Garlic & Herb seasoning for the first time in over two weeks, this past Monday night! I was twitching all night. At first, I was thinking it might have been the coconut Larabar I ate that evening but now......maybe the seasoning was my problem!! I called Larabar before I purchased the product and they told me it was manufactured in a gluten...
  11. sylviaann
    I did my own personal research on blood labs and most standard blood labs do not test for "Intracellular levels". In other words, standard blood labs do not measure your true nutrient levels and are not truly accurate. The Intracellular Vitamin Analysis by Spectracell Laboratories is a special patented blood test that reveals a person
  12. sylviaann
    Keila, I am so sorry you've had a rough time! You are on the right path for finding answers and treatment options. If you are able to travel to Atlanta, I really think you would love my doctor. There is a nice Holiday Inn Express close to her office and some rooms have a full kitchen. Whole Foods is less than 5 minutes from the hotel. My husband...
  13. sylviaann
  14. sylviaann
    Thank you..I totally understand about the constant planning, prep work, and cleanup! I stand and look at the refrigerator too! I was eating Larabars but now I am apprehensive (I ate a coconut one recently and twitched all night). I can't eat potato chips anymore. I heard that Lays Stax are supposed to be safe but I am scared to attempt eating any because...
  15. sylviaann
    Thank you Lisa I read your recent post about the spices and I have started looking closely at mine, since a have a closet full of McCormick's. What spices are you using now? Are there any safe spices out there?? I am frustrated about snacks..I love fruit but I crave something more. I stand at the pantry and stare, thinking there is nothing safe I can...
  16. sylviaann
    I do not think it is weird that you got sick from kissing your husband, since the same thing happened to me!! I was jerking & twitching for two nights-which kept me up with no sleep!! from my husband's beer residue last Friday night. I wish I knew about casein..since my more immediate reaction (myoclonus) occurs when I am drifting off to sleep (day...
  17. sylviaann
  18. sylviaann
    I have been working on it for the past few months and already have figured out that I am intolerant to corn tortilla chips and gluten-free corn tortillas. I have also eliminated soy (i.e. worchester sauce, gluten-free terriyaki & soy sauce), Soy lecithin (wrong spelling) as it appears to bother me (found in many chocolates). I have not had regular milk...
  19. sylviaann
    You are very welcome! A friend of mine sent me the report (he is a celiac and subscribes to Dr. Blaylock's monthly reports). I have forwarded copies of the full report to several friends who are suspicious they may have family members who are having symptoms. I also intend to copy and send to a few of my doctors. If you would like me to forward the full...
  20. sylviaann
    I am from originally from Savannah, Georgia so I guess I will have to start purchasing bags of pecans and break out the old nutcracker!! What childhood memories that will bring back! I will also check with Whole Foods to see what they might have. Thanks again Patti, Sylvia
  21. sylviaann
    Thank you Patti, I believe we have similar sensitivities. I was glutened by my husband's beer residue last Friday night and it triggered my myoclonus for two nights and I had a horrible headache all day on Sunday. Every person is different and I believe that many Celiacs can eat Amy's and other mainstream products safely. I have come to realize during...
  22. sylviaann
    Are you familar with the "Blaylock Wellness Report" written by a prominent neurologist? It is a monthly on-line publication and a friend of mine recently sent me this month's copy because Dr. Blaylock's feature article is about celiac disease..here is an excerpt from it.... When Immune cells Attack..... Celiac disease can be at the root of neurological...
  23. sylviaann
    I agree with you. I already know the cause-Celiac Disease. It has been 2.5 years of myoclonus Hell, a stack of tests that I managed, extensive reserach and nine doctors later, I have confirmed this problem because I pursued returning to my former physician in Atlanta (a leading Celiac Specialist) and diaried an elimination diet. Google this... The neurology...
  24. sylviaann
    Many thanks for sharing info on your safe cereal product! I have been searching for a safe, nutritious cereal and will check into this for myself. As you can relate, I never imagined that I would be so sensitive to gluten.. I never had reactions to food products in my life until this illness was triggered. My doctor educated me on this disease in 1998, so...
  25. sylviaann
    Thank you for your concerns. I was retested for Celiac Disease in 2007 by an endocrinologist in Florida and tested negative. My Celiac Specialist in Atlanta (who is nationally recognized as an authority on Celiac Disease) could clearly see that my symptoms (weight loss, iron deficiency anemia, myoclonus, high thyroid autoantibodies, etc.) all pointed to...
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