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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Hi Greg and welcome to the board. I don't think that celiac in itself is going to be something that will qualify you for social security. However many of us have conditions that are related that may be. The best folks to talk to would really be social security themselves and your doctor. What sort of problems are you still having? If you have been...
  2. ravenwoodglass
    I am soooo glad for you that they finally figured it out. I did wonder why noone had given you a script for prednisone other than the mouthwash. Hopefully with that and the lidocaine and pain killers the end will soon be in sight. Good for you for continuing to find the cause and not giving up.
  3. ravenwoodglass
    Glad to hear your feeling better and I hope it continues.
  4. ravenwoodglass
    Those lost and their families will always be in our thoughts and hearts. They say time heals all wounds but some wounds never heal. 9/11 created one of those.
  5. ravenwoodglass
    I fully understand your reluctance to put him on the gluten-free diet without a doctor saying officially that he has it. However, and this is a REALLY BIG however, in children under the age of 4 blood testing for celiac has an even higher rate of false negatives than it does with adults. That is why countries that routinely screen asymptomatic folks retest...
  6. ravenwoodglass
    Celiac is much more than just a GI disease. For some it can have a very strong neuro component that shows for years before the GI stuff seems like anything more than an annoyance. During this time the antibodies are coursing through your blood and into all your other organs. For some this will attack the joints and muscles, some the gallbladder, some the...
  7. ravenwoodglass
    They also fail to ask if a person is taking supplements with folate when they do test. Folate can give a false normal reading to the B12 even if the person is not able to utilize the vitamin at all. It can take a long time for blood B12 levels to go down and some doctors when they do test don't bother to look at what the reading was a year ago. My B12...
  8. ravenwoodglass
    Or at least they haven't seemed to have showed up in your little one yet. Your right to be afraid of using wheat flour in your home. It can take up to 48 hours for the dust from the flour to settle completely out of the air and you will be breathing it in. Not a good thing. There are many good gluten-free mixes for cakes and muffins and other goodies...
  9. ravenwoodglass
    I avoid distilled grain vinegar unless I know for sure that it is derived from a nongluten grain. I also have to avoid gluten grain distilled alcohol. I break out in DH sores and get a gluten effect from them. I am fine with any other form of vinegar. I like to make pickles and I use Heinz distilled (from corn). As mentioned a lot of the distilled is...
  10. ravenwoodglass
    Yes. When I was newly diagnosed DH breakouts would occur within a few hours of exposure. If you want to have it checked to see if it is DH for sure then a trip to a derm would be in order. Make sure the derm understands the biopsy procedure, he would need to biopsy the tissue next to the lesion to look for antibodies in the surrounding skin. A positive...
  11. ravenwoodglass
    I don't know if it might be something you could use but I have used a product called 'Surgeon's skin secret' The main ingredient is beeswax with light mineral oil and lanolin. The beeswax provides a barrier that keeps the skins moisture in and outside moisture out. I found it quite helpful when I had to have my hands in water a lot. I haven't checked...
  12. ravenwoodglass
    I also am sensitive to gluten grain distilled items and I have had no issues with Hellman's. I use the new Canola variety since I avoid soy oil and it does say gluten-free right under the ingredients. I believe the vinegar is derived from corn but you may want to call the company just to get used to checking. Not all distilled vinegar is from corn though...
  13. ravenwoodglass
    It does sound like you are having an adverse reaction to that sanitizer and or whatever you are doing the dishes with. Is there some way you can use disposable medical (these would be nonpowdered) quality nonlatex gloves and eliminate or at least cut down on the use of the sanitizer?
  14. ravenwoodglass
    Here are a couple of studies: Mayo Clinic Discovers Potential Link Between Celiac Disease And Cognitive Decline Open Original Shared Link Alzheimer's and Celiac - are they related? Open Original Shared Link Many have severe memory and thought problems related to gluten. Whether these are Alzheimer's or whether they fall into another...
  15. ravenwoodglass
    The odds you both are gluten intolerant are really pretty good. Everyone in my family assumed it was inherited from me until I pointed out that both children showed up on blood work. I don't. That prompted my ex to get tested and guess what? He was positive also. You both show symptoms of gluten intolerance even if it is not full blown celiac. After...
  16. ravenwoodglass
    Have you checked all your personal care products like shampoos, conditioner, lotions, makeup etc? Have you recently started doing home remodeling or have you started do any kind of arts and crafts project? Drywall compound and sheets for example are not always gluten-free, many glues and clays are also not safe. You also need to reaccess the processed...
  17. ravenwoodglass
    How about gluten-free pretzels. I like the Wylde ones, they are also soy free but there are others available. Ener-g makes some and Glutino. I like to make my own 'trail mix' with raisens, pretzels, Rice Chex, and gluten-free chocolate chips.
  18. ravenwoodglass
    Welcome to the board. Isn't it great when that knawing pain in the gut goes away? Without a pill!!!!!!! I am sure you will continue to improve although it is a bit of an adjustment in the beginning. Ask any questions you need and feel free to vent. I hope your soon over the hump and feeling great. One thing though, if the headaches and blurry vision...
  19. ravenwoodglass
    There are unfortunately a lot of false negatives with biopsies. We have 22 ft of small intestine and the damage can be patchy and if the right place is not biopsied then a false negative results. There are also changes that precede the total villi destruction that not all doctors recognize. With an antibody level of 241 that is pretty conclusive. No matter...
  20. ravenwoodglass
    I would go ahead and call and ask. Are you and your DH having health issues of your own? If so that might make it easier to get them to order the test. If you have the kind of doctor who does evening call backs I would ask to have him call and ask him directly. That way you could explain why you really want the tests done ASAP. Even if your not having...
  21. ravenwoodglass
    I suffered from severe cyclic bouts of depression and also had a sub-illeal seizure disorder that caused out of the blue, for no reason rages. I have also been formally diagnosed with post traumatic stress disorder, PTSD. The celiac diagnosis did away with the depression and the seizures. The only time I get the depression now is when glutened, it hits...
  22. ravenwoodglass
    If you had positive blood work when you were diagnosed it can be helpful to see how much the levels have gone down. It is hard to ferret out all gluten sources and at times this can let folks know if it is sneaking in somewhere. If you did not have postive blood work, 30% of us don't, then the retesting would be of no value. It is a good idea even then...
  23. ravenwoodglass
    I so agree.
  24. ravenwoodglass
    Yes problems like the ones you mentioned can occur. Along with a lot more. The fact that she improved during a short time gluten-free is a good sign that that is what you need to do. However do not make her gluten free until after you are done with all testing. This can cause a false negative. Also be aware that testing is far from conclusive with celiac...
  25. ravenwoodglass
    "Just recently I had a large area on my shin that was itchy and I scratched and it broke out =- It looks awful. " You may have been doing that scratching as the blisters were forming and not noticed them. If you have a derm look at it he can biopsy BESIDE the lesions and if it is DH he will find antibodies in the adjacent tissue. As mentioned DH leaves...
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