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sylviaann

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Everything posted by sylviaann

  1. sylviaann
    Greetings Korwyn!!! I want to thank you for posting about your symptoms and experience with myoclonus. You have helped me to solve a MAJOR piece of the puzzle causing my myoclonus symptoms. I was conducting non-stop extensive research this past week after speaking to another celiac friend who also has myoclonus. I discovered that my myoclonus is triggered...
  2. sylviaann
    Are you intolerant to soy or glutamates (MSG)? Check your Kettle chips and see if yeast extract is an ingredient. If it is, this is a derivative of MSG (a very strong glutamate) and many people get ill from MSG. I was glutened by a Kettle chip (lightly salted-no MSG). The company's product PPM level may be too high for you to handle (they test up to the max...
  3. sylviaann
    As far as the Celiac Blood Panel, there can be false negative readings (it is not 100% accurate). Make sure that your doctor includes a blood lab to test you for an IGA Deficiecncy. If you are IGA deficient, it means that you may test negative on the Celiac blood panel..but actually be positive. Many doctors fail to order this test becaue they are not familiar...
  4. sylviaann
    Hi There, I live east of Tampa and encountered the same problem. I have yet to find a GI doctor in my area who is well educated on Celiac Disease. I travel to Atlanta to see Dr. Cynthia Rudert 2 x per year (she was my former doctor and is the only Celiac Specialist in the southeast). Since you have a formal diagnosis and strong family history, you may want...
  5. sylviaann
    Greetings! I am so sorry you have been dealing with these unexplained symptoms and understand how you feel! Celiac Disease can definitely affect the liver and pancreatic functioning. My father had pancreatic cancer (diagnosed in 1998) and lived for five years. I will always suspect that he was a latent Celiac (he was never tested for Celiac Disease)...
  6. sylviaann
    Hi Lisa! Is the lancome lipstick you are using also Soy Free? I would love to try it but I am intolerant to soy. Thanks a million, Sylviaann
  7. sylviaann
    I buy the gala and fuji apples too I grew up in a medical family and like you, was researching extensively for two years when I presented the myoclonus theory to my Celiac Specialist in Atlanta last year. My primary symptoms are GI and the myoclonus. Are you able to eat the gluten free breads, flours and pasta? Is the gluten content (ppms) too high for you...
  8. sylviaann
    This is very interesting! I stopped eating peppers months ago because I read that the waxes sparyed on many fruits and vegetables contain gluten. I only eat organic apples, regular bananas, grapes, blueberries and melon (pre-cut..I wash it). I also canot eat Agave because it causes me to have a lower "GI reaction". I have only made my myoclonus connection...
  9. sylviaann
    Hi Michelle, I am still struggling with my myoclonus symptoms and it has caused me great frustration. I stopped eating all gluten-free bread, pasta, and flours a week ago and am now questioning whether lundberg brown rice glutened me this past Monday. I cannot believe how incredibly super sensitive I am..and starving! Please keep me posted on your results...
  10. sylviaann
    Hi there, I was wondering if you notice a worsening of your myoclonus if you drink a beverage high in suger a few hours prior to bedtime? I drank Welch's white grape juice (diluted with water) last night with dinner and my symptoms worsened at bedtime. I also have several other "suspects" on my list but was wondering if this has ever happened to you? Thanks...
  11. sylviaann
    I realize that this is an old thread but wanted everyone to know that I recently communicated with a regional manager at AfterGlow. When I inquired as to whether the company's Everyday Mineral products (including lipsticks) were actually tested for gluten and soy, the answer was NO. I would love to try their products but I am super sensitive. If anyone who...
  12. sylviaann
    I discovered a thread on this topic from this past July and from a few years back Ravenwood, I hope you see this as I am looking to start a serious elimination diet and hope you can help me. There was an old Thread where you disussed your elimination diet (turkey, sweet potato, rice, and cranberry juice). I am super sensitive and suffer from myoclonus...
  13. sylviaann
    Hi there, I can totally relate to your myoclonus!! I started the gluten-free diet last October 2007 but it took me six months to discover many products I was using or consuming were not truly gluten-free or cross contaminated. I had already been suffering from myoclonus for almost two years before I returned to my Celiac Specialist for a consultation. Long...
  14. sylviaann
    Hi Ravenwood, I hope you are doing well! I hope you receive this message......I was reading an old post from a few years back where you discussed your elimination diet (turkey, sweet potato, rice, and cranberry juice). I am super sensitive and suffer from myoclonus if I ingest gluten or use cosmetic products containing gluten. I have been truly gluten-free...
  15. sylviaann
    I formerly lived in Atanta (Marietta) for eleven years and still visit 2x every year to see my GI doctor (Dr. Rudert) and family. My husband and I live on the west coast of Florida and I am originally from Savannah. I am always looking for other gluten sensitive or Celiac friends to meet/have lunch with when I visit Atlanta. Do you live on the north side...
  16. sylviaann
    How ironic..I have been doing research on this very issue! My dietician ordered an Organic Acids test for me a few months ago and it revealed that I have been exposed to a Xylene. Xylene is a toxic petroleum chemical found in gasoline, paint, cleaning solvents/household cleaning products, adhesives, upholstery, pillows, water bottles, carpeting and the...
  17. sylviaann
    Hi Michelle, I hope you receive my message..How did your test/procedure with Dr. R. go today?? I found a really interesting article that I thought you would like to read since you and I have been been exposed to toxic chemicals. Check this out...there is a definite link between chemical exposure and gluten intolerance! I am still "detoxing" from my exposure...
  18. sylviaann
    Have you ever heard of a cosmetic company called "Yes to Carrots"? I noticed their products at Target yesterday. I just looked them up and they state their lip balms are gluten-free and soy free. Have you ever heard of them or know anyone who has used them safely? Thanks a million, Sylviaann
  19. sylviaann
    I used to eat Amy's soups and a few frozen dinners until I finally realized that my hallmark gluten symptom (periodic limb movement or myoclonus) would become severe after eating these items. When you don't sleep for several nights, giving up eating these products was not a difficult decision! I am super super sensitive and these products were produced in...
  20. sylviaann
    What brand of almond oil do you use? One other question...have you found a safe all natural body lotion (no gluten soy, parabens or petroleum products). I am using Now's Joba Joba cocoa butter & jj oil but I would really like a lotion (for dry skin) when I am in a hurry. Thanks a million for any ideas! Sylviaann
  21. sylviaann
    Thank you for all the great ideas..Deb, I thought all the Burts Bees lip balms contained soy oil but I hope I am mistaken on the peppermint one. Do you know what the product's source of vitamin E is? Thanks a million, Sylvia Ann
  22. sylviaann
    Attention: Ravenwood or Jersey Angel...........or anyone else willing to help I am having a very diffilcut time finding a gluten-free, soy free, lip balm. I was using Burts Bees but it contains soy. Three weeks ago, I tried a new organic lip balm mnade by a samll company called SANRE chocolate kiss. It is an organic product and I had a reaction to the...
  23. sylviaann
    Hi there, I live in the Tampa area (east of Tampa-Bloomingdale area) and can relate to your frustration with doctors. I feel the same as you about a career helping celiacs. I grew up in Savannah and was raised in a "medical" family. In late 2006, I started experiencing myoclonus and worsening GI problems that were causing me great suffering. I saw approx...
  24. sylviaann
    I understand your concerns. I worked in outside sales several years ago and back then..noone had even heard of Celiac Disease ot gluten intolerance! There are so many people who visit the DC area from all over the world. I feel confident that many nicer restaurants are frequently accomodating gluten sensitive and celiacs daily. Here are a few ideas but ultimately...
  25. sylviaann
    I am so sorry you have been dealing with this and can relate somewhat. Ihave suffered from myoclonus (limb movement and twitching) only at sleep onset for almost three years. A few years ago (prior to going gluten free), there were times when my entire body would shake (as if I were having a seizure (but never confirmed). I recently sought the consultation...
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