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rumbles

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by rumbles

  1. rumbles
    CeeCee, You might want to check out the East Florida Celiac Support Group (Open Original Shared Link), they meet in Cocoa Beach; their next meeting is in January. I've been to a few of their meetings (a bit far to drive for me), - they're a great group of people with a lot of information. Pat Sebastian FL
  2. rumbles
    Thanks, Lola! I will be looking for new health insurance coverage in the next few months, and have heard that some companies won't issue a policy with celiac, - but I wasn't sure if the same was true with DH, since it's now known to be celiac disease. I was diagnosed when I was very young, but was told it's something I would grow out of, - it's been so...
  3. rumbles
    Has anyone had any problems getting medical insurance after being diagnosed with DH? (If you have run into problems with this, and if it's allowed, please list the first initial of the ins.co.) I'm concerned about my dermatologist listing DH on records if it means trouble switching insurance companies. ~ Thanks, - I really appreciate the help on this...
  4. rumbles
    Casey, If your husband is on a strict rice diet, he probably isn't getting the vitamins and minerals that he needs. Especially if he does have celiac disease, - celiac disease creates a problem in absorbing vitamins and minerals in the lower digestive tract; especially with B vitamins, iron and folic acids. His energy loss may well be due to vitamin deficiency...
  5. rumbles
    Having suffered for many years with the symptoms of beri beri (hello, U.S. medical community, are you listening? - Listen to this: for over ten years, you insisted that I had fibromyalgia, and you insisted that I had Lupus . . . exactly how much did all of those drugs help me, and exactly how much did all those drugs and multiple office visits every week...
  6. rumbles
    Depends on how sensitive you are. After getting sick last month, I called Johnsonville, and they confirmed that all of their products have potential cross contamination; they advised me that since I'm so sensitive, that I should not consume any of their products.
  7. rumbles

    ARCHIVED P. F. Changs?

    rumbles replied to Jo.R's topic in Gluten-Free Restaurants

    You might want to call in advance to make sure that they are prepared. I love PF Chang's, - have been to a few of them in different parts of the U.S., - a couple of months ago I went to one in the Miami area, - they didn't have the gluten free soy sauce, and didn't know that they offered a gluten free menu - after a two hour drive, it was a major disappointment...
  8. rumbles
    I am extremely sensitive, and react to minute amounts of cross contamination that don't seem to bother most others. I contacted Johnsonville a few weeks ago because I was reacting to their product. Initially they advised that the products that I purchased were not made on dedicated lines and that they could tell this by the package UPC, but advised that...
  9. rumbles
    I was sooo excited, - I read this post on Saturday evening, went to the Delphi Forum web site, joined, found the list of gluten free products, found Johnsonville sausage listed, went to the Johnsonville web site to confirm the gluten free products, went to three supermarkets to find the product, buying enough to last for weeks, made them yesterday morning...
  10. rumbles
    Hormel meat Au Jus has cross contamination issues. I got sick from it multiple times (I tried it a few times, even though there wasn't anything else in my diet that would cause a reaction, - just to be sure that that was what I was reacting to), - I called Hormel, who told me I couldn't possibly get cross contaminated because they wash their equipment twice...
  11. rumbles
    . . . as for the negative blood test, - that is not definitive. Blood tests are not 100 percent accurate. There are many of us here that tested negative on blood work and positive on biopsy. Are you gluten free? - If so, has that reduced or alleviated symptoms? If you are having symptoms, and going gluten free gets rid of the symptoms, for many of us...
  12. rumbles
    You might want to ask for a more thorough definition, and a second opinion. If it's anything other than a normal state or condition, it has a cause. It could be nothing, or it could be something that needs to be researched, defined and corrected, - you owe it to yourself to find out exactly what the doctor meant, and to verify the finding through a second...
  13. rumbles
    Allele's, genetic markers are not complete for Celiac disease, - they know what they believe are the main or prominent markers, but researchers know that they do not have all of them yet. The blood tests are not 100% accurate, - not close, - they can be predictive, and they also can give false positives. Even the "gold standard," biopsy can be wrong if...
  14. rumbles
    I did have the nausea/vomiting problem before I knew what was causing the rash and other symptoms (I had both DH and Celiac symptoms before going gluten free). Although never tested for it, I had most of the classic symptoms of beriberi - vomiting, poor concentration, drowsiness, fatigue, apathy, neuritis, paresthesias (numbness, tingling sensations, shooting...
  15. rumbles
    The timing of this topic is almost scary! I've been having a pretty persistent twitch / spasm in my left upper eyelid for almost three weeks now, ~ most annoying! I realized a couple of days ago that it's getting worse, and seems to be at it's peak about an hour after taking vitamins, - so I've cut out added vitamins A and zinc the last two days, and it...
  16. rumbles
    "I used to get some brown rice tortillas that were at our health food store, but they have been out for the past two months. They never really rolled very good (quite crumbly), but at least I could use them for quesadillas" To reduce the tortilla crumble, microwave on a paper towel (on a microwave safe plate) for about 35 seconds first. We use corn tortillas...
  17. rumbles
    The Redbridgebeer.com retail locator is working as of late Wednesday night. I was finally able to buy it in my area (central east coast Florida)! For a former Bud and Coors drinker, - not bad! A bit more bitter, but definitely something that I can get use to. Out of desperation, my DH (also gluten intolerant) was brewing his own sorghum beer (same types...
  18. rumbles
    I grew up in central Jersey, but decided on a warmer climate . . . once a Jersey girl, always a Jersey girl.
  19. rumbles
    The East Florida Celiac Support Group is meeting this Sunday in Cocoa Beach if anyone is looking for a support group in east central Florida. Info is on their website at www.eastflceliac.com. I went to their meeting last month - it was pretty informative, and good to meet other folks living with this!
  20. rumbles
    Welcome, SVG! My husband and I (double whammy!) just passed one year gluten-free, and it absolutely does get easier as time goes on! The first thing to accept is that there will be times where he is accidentally glutened, but those times become more and more infrequent as you both get accustomed to the diet, things to look for, and questions to ask (to...
  21. rumbles
    Please don't rule out other possibilities, as there are many. About nine years ago, I was exhausted to the point that I literally couldn't get out of bed, and suffered terribly from Raynauds (cold extremities, often with hands and/or feet turning pure white or varying shades of blue/purple), my Rheumatologist sent me to an infectious disease specialist, who...
  22. rumbles
    Some fruit juices do contain gluten, either from the manufacturer's recipe, or from cross contamination. Albertsons (Acme, Max Foods, Sav-On, Osco, Shaw's, Jewel markets) gluten free product list indicates that their orange juice is possibly cross contaminated, that trace gluten may be present on the manufacturing line (response from Albertsons: April 10...
  23. rumbles
    Cindy, I don't know if it will reach him directly or not, but I just sent an email to Dr. Peter H.R. Green, M.D. at Columbia University advising him of your posts, and requesting his assistance. In the meantime, please discuss with your attorneys about your attorneys engaging the media and your lpolitical representatives. Also please contact your local...
  24. rumbles
    What part of SE Florida?
  25. rumbles
    Keeping a bowl of cut (cubed) fruits, such as watermelon, honeydew and cantaloup in the fridge has definitely helped me break my carb addiction. It became easier and faster to grab a few cubes of fruit than to find the next gluten-free snack to attack. Reading books like Dangerous Grains and The Paleo Diet made me realize that the sodas that I was addicted...
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