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darlindeb25

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Everything posted by darlindeb25

  1. darlindeb25
    Subject: [CeliACTIONetwork] Contact legislators about Celiac Disease The American Celiac Disease Alliance makes this easy. Please take the time to take action... <<Disclaimer: Verify this information before applying it to your situation.>> Many of you waited a decade or more to FINALLY be diagnosed. We can't wait a decade for...
  2. darlindeb25
    Open Original Shared Link This link has a guide to gluten free dining in NYC and I think it even said it has a map. It was sent to my support group with pics from our vendor fair. I thought those of you asking about places to eat in the city may find it useful.
  3. darlindeb25
    Does anyone know about water softener tablets? They're supposed to be salt, but do they put gluten in as a binder? I had a water softener for years in Michigan and I used different brands of salt, was never glutened by it. You can always call the company to be sure. Salt should be 100% salt.
  4. darlindeb25
    When doing bloodwork, you must ask for a B12 count or they don't even check it. Then, if the doctor tells you it is in the normal range, then you probably need more. The normal range is much lower than your B12 should actually be. You can't really get too much B12, your body eliminates what you do not need daily. I take 2400mcg daily, the recommended...
  5. darlindeb25
    Generics are fine, but, you must all the manufacture before taking any drug, just to be sure it's gluten free. I take Celexa which is made my Forest Labs, the generic brand is Citalopram HBR, which is also made my Forest Labs, at least here on Long Island, it is. My pharmacist calls and makes sure meds are gluten free before he will let me have them, isn...
  6. darlindeb25
    Terry, a gluten free diet can not hurt him and you may just be surprised at the results. I think you are on the right track. Good luck!
  7. darlindeb25
    I too, have celiac disease. My PN symptoms began before going gluten free. My PN progression greatly slowed after going gluten-free. My symptoms did not go away and now, after 7 yrs gluten-free, my PN is progressing slowly. I too, take B12 daily, 2400mcg daily. In Oct of 05 my B12 level was 1277, yet I was taking 1200mcg daily of B12 then and I was not...
  8. darlindeb25
    Sometimes panic attacks have nothing to do with anything that happened in your past. Panic attacks also can be caused by chemical imbalances in your brain. Celiac disease causes chemical imbalances, when you do not absorb your vitamins and minerals properly, then things can happen to your thought processes. Sometimes you need medication to "rewire" your...
  9. darlindeb25
    I think my sister and I both had mild symptoms for years and years. As a child, she ate dirt and the doctor said it was a vitamin deficiency, she was given some medicine to take everyday and no further mention. I had tummy aches often, motion sickness, anxiety. When I was pregnant over 30 yrs ago with my 2nd child, my symptoms worsened. Each pregnancy...
  10. darlindeb25

    ARCHIVED Dr. Green

    darlindeb25 replied to justme's topic in Doctors

    I'm sure they do accept some insurances. Dr. Green was asked by a woman Sunday why he doesn't take medicare and he said he does work with medicare. Just call the office and ask what insurances they participate with or just ask if they take yours.
  11. darlindeb25
    Most teas are gluten free. Red Rose, Tetley, Nestea. As long as it says, 100% tea, it is ok. Be careful of some of the flavored teas, they may contain gluten--some even state if they are gluten free or not.
  12. darlindeb25
    I feel that flatten villi is the final stages of celiac disease, yet it is celiac disease no matter what. For now, for most doctors, it's celiac disease only if they see flatten villi. I feel they just have not developed testing methods to know it's celiac disease before the flatten villi happen. We should not have to wait to be that sick before knowing...
  13. darlindeb25
    A friend of mine who is a sports medicine doctor swears by her chiropractic for carpal tunnel, as do several violinists I know....They all say that the chiropractor fixes it in 1-3 visits, as opposed to surgery and months of PT. Might be worth checking out, Darlindeb! FiddleFaddle--that would be great, I wonder if they can do full body repair! ...
  14. darlindeb25

    ARCHIVED Scared

    darlindeb25 replied to shan's topic in Coping with Celiac Disease

    Has your husband's love for his daughter changed just because she is celiac? I doubt it. Celiac's are normal people too, we look the same, when we are happy we smile, when we are sad we cry, when we get cut we bleed--we eat differently. When a celiac goes gluten free, we feel better and we decrease the chances of so many other problems. Would you leave...
  15. darlindeb25
    I do belong to a great support group and we are all so happy that so many people had a great time. It was great to meet those of you I did meet--was a good day. Thank you.
  16. darlindeb25
    It's like Carpal Tunnel syndrome. You stop typing on the computer so much, it goes away, you forget about it... Gluten is the same way.... This may be true of some, but not true of me. My carpal tunnel has been with me for 10 years now and I never forget I have it.........and gluten is not something I have forgotten about since being gluten free. I...
  17. darlindeb25
    Joel--Did I meet you? I met so many people, my head is spinning. So many out here who have so many questions. I really like Anne Lee, yet I was very disappointed when she told at least one lady that it doesn't matter if her make-up contains gluten as long as she doesn't suffer from DH. That just so isn't true for so many of us. Dr. Green shook...
  18. darlindeb25
    On May 20, 2007, there will be a walk in Queens (Whitestone/Bayside). It's "The L Lodico Walk for Celiac Disease. The walk is being held in honor of Lina Lodico's daughters (6 & 4 1/2 years old). Lina also has celiac disease and wants to make her daughter's adulthood and easier one. She isn't charging any fees for vendors to come. For any info, please...
  19. darlindeb25
    The vendor fair was today, April 29th. A good time was had by all. Every vendor came except for one and they all brought lots of goodies. Dr. Peter Green signed many of the books we were selling, written by him, "Celiac Disease, The Hidden Epidemic". Two of you came up to me and said, "I found the lady with the long hair!" Tinkerbellswt, aka Stephanie...
  20. darlindeb25
    I had not thought about it this way, yet I have another example that I am sure many of you can relate too: If you take normal flour and wash it in lots and lots of water what you end up with is a sticky mess which is almost pure gluten... When I used to make cutout sugar cookies, I used to dread the mess it makes. Flour all over the table--sticky...
  21. darlindeb25
    Meemers, just remember, your doc may tell you it doesn't matter what you use on your hair or skin. The doc is wrong. To begin with, anything your hands come in contact with can cause a cross contamination issue. Shampooing and conditioning your hair can gluten you. I find it very difficult to never get a taste of shampoo or conditioner, as you are rinsing...
  22. darlindeb25
    I was told that even bleach doesn't kill it. The best we can hope for is that we get all the crumbs. Wheat can't be killed by heat. Gluten is the glue that holds things together, the hotter it gets, the stickier it is, in my opinion, anyways. When using a fryer for cooking breaded items, it's not the oil that is the problem, it's what stays in the oil...
  23. darlindeb25
    I tried after 15 years without any exposure to any grains, starting with the "safest" ones and still could not tolerate even rice or corn. (interestingly I got different symptoms from them than from gluten containing grains.)I too, get different symptoms from corn, rice, and soy, than I do the regular glutens. Gluten gives me diarrhea, the other grains constipate...
  24. darlindeb25
    Imodium A-D Caplets: Manufactured by McNeil Consumer Products Company. Gluten free: Yes. Vegetarian: Unknown. Verified: 1/11/07. Yet, this is the caplets and I do know they are gluten free. I haven't used the liquid since before I was gluten free, so I do not know. I just went to their website and read the ingredients, I honestly do not see anything...
  25. darlindeb25
    The word is: hydroxpropyltrimonum and oops, I lied, not 26 letters, it's only 20.
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