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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I know what you mean about walking like your drunk. I used to compare it to walking on a ship's deck in the high seas. I got so bad I needed canes for support. For some reason I used to always feel like I was falling to the right. The one good thing about hyper hearing is the birds in the woods. So many little voices singing pleasent tunes. I love being...
  2. ravenwoodglass
    Welcome to the board. Your gliadin IGA and IGG are both coming down nicely. How are you feeling? Have most of your symptoms gotten better? Since they aren't giving any numbers other than over 100 for the TTG it may be actually coming down as we don't really know how high it was to begin with. Others have more knowledge about the TTG than I so hopefully...
  3. ravenwoodglass
    I have had 'superman hearing' since I was a child and still do. I keep the TV on whenever I am awake and do the sleep feature at night so it turns off after I go to sleep. Otherwise I startle over every little noise. I won't keep a regular clock in my house anywhere because I can hear it even if it is downstairs and I am upstairs. That hasn't changed going...
  4. ravenwoodglass
    I was the first one diagnosed and kids were tested 6 months later. Although my doctors firmly diagnosed me celiac I did have false negative blood work but the second challenge the GI doctor demanded almost killed me. I have no doubt my Mom had celiac as she also had DH and died very young of a excretory system cancer. My Dad also had many of the same symptoms...
  5. ravenwoodglass
    Yea thyroid seems to be the general idea from folks. Can you have false negatives on the thyroid testing? I had some thyroid testing a couple years ago that came back fine but things do change. Could my long term, 9years, of iodine avoidance have caused thyroid damage? If so would my adding more iodized salt back in help? I did start using iodized salt a...
  6. ravenwoodglass
    US doctors are just as clueless. It took over 40 years for me to finally get a diagnosis. As to the pain I am unfortunately all too familiar with it. Do make sure you are strict with the diet and do avoid the products that have Codex wheat starch. My pain did resolve once I had been gluten-free for a few months but it does return when I get glutened or...
  7. ravenwoodglass
    Thanks for the info. I do have to agree that you and the others are most likely right about the nutrition issue. I am going to make a trip to the health food store tommorrow and get some other supplements. I suppose I should also start following my own advice and do more cooking on the days that I do have the time so that I don't end up just making a pnut...
  8. ravenwoodglass
    Can you go back to this for a bit? Since time is an issue for you maybe spend some time on the weekends doing as much prep for the week as you can. Cook up a large quantity of meat and then package in meal size portions for the rest of the week. It takes just a little more time to make a big batch of something as it does to do a one meal size one. Things...
  9. ravenwoodglass
    Thank you everyone for your replies. I have copied down the tests and appretiated your listing them. I had melasma (sp) when I was pregnant and that was a darkening of my skin on my face. I think they call it the 'mask of pregnancy' and the skin thing is not like that. It is more a reddening like a sunburn or bruising. I also have a circular spot or two...
  10. ravenwoodglass
    Okay great minds here maybe you can help. I know I should see a doctor but I have no insurance. I am going to see if I can get a sliding fee scale at a clinic next week if I have the time or energy but it will have to be a real big sliding scale for me to afford it. I know I am not getting glutened or soyed as I don't have any symptoms of that but I am...
  11. ravenwoodglass
    I could be wrong as I read a lot of posts but didn't you test positive on blood tests? If you didn't then you have a sound plan but if you did have positive tests then staying off gluten would be a good idea. The decision is yours to make either way though and if you do need to be gluten free you may find that having the occasional gluten item makes you sick...
  12. ravenwoodglass
    Your doctor needs to have a serious talk with his staff. If you don't have an appointment soon send him a letter (do mark it personal and confidential so the staff doesn't open it and toss it) or ask for a call back from him. Your doing a great job on the diet. Congrats on getting those numbers into the normal ranges.
  13. ravenwoodglass
    It is the same way here in the US. It seems to depend on what country you are in as to what genes are recognized. Research is showing that at least 9 but possibly many more genes are involved. My genes are not celiac associated genes here in the US. They are thought to be genes associated with RA. Oddly enough some folks with RA respond quite well to the...
  14. ravenwoodglass
    This was my thought also. If you have an intolerance your issue may not show up quickly but appear a up to a week later. So if you are eating something you have an intolerance to a couple times a week it could make you feel ill constantly because you are still reacting when you add in another dose of it. You may want to go with a very clean, unprocessed...
  15. ravenwoodglass
    Did you contact the companies? It might be helpful to them if you take a couple of digital photos of the tests and email them to the companies along with the notification and see what they say.
  16. ravenwoodglass
    I have had gallbladder attacks when glutened. It is very painful and thankfully haven't had one in years. IMHO doing a cleanse is not a real good idea. If the pain continues please contact your doctor as there are many things that may cause that type of pain.
  17. ravenwoodglass
    I agree with Karen. Do get her strictly gluten free for a bit and see if stuff resolves. Being gluten free will not have any impact on any other testing. Do be sure to eliminate rye and oats also. Also be careful about CC and stuff she may play with like play-doh.
  18. ravenwoodglass
    Have you ruled out other intolerances? Soy is one that gives me the issues you are describing but others may find those issues with casien or nightshades. I did find Pepto Bismal liquid to be helpful. If you haven't tried it you may want to. One dose stops that pain in it's tracks when I get soyed. It might not help with associated C or D though. If you...
  19. ravenwoodglass
    Sorry you are feeling so bad right now. I think many of us can identify with lonely hours on the john in the middle of the night. You can feel free to post your misery here rather than on facebook. We understand but folks that don't deal with it really don't want to hear the gory details. Tell your friends that have blocked your news feeds that you are not...
  20. ravenwoodglass
    Unless your intestines rupture or are cut through some sort of trauma stool itself is not going to leak into your abdominal cavity. If it does that is a real life threatening emergency and you would have no doubt about your needing to go to the ER. There is such a thing as a 'leaky gut' where the proteins from food can 'leak' into your system but it is not...
  21. ravenwoodglass
    A few of us, myself included, react to distilled gluten grains. I use Heinz products because they don't use distilled gluten in their products. I don't know about Hunt's. Since technically distilled gluten is gluten free companies would not be doing anything wrong by using them but wouldn't always put it on the label. Malt vinegar would always be listed as...
  22. ravenwoodglass
    The first thing you do is go to the doctor and get stool testing to make sure you actually have parasites. The doctor can then prescribe the proper medication to rid you of them.
  23. ravenwoodglass
    You need to have active lesions for the biopsy so it depends on how quickly the antibodies leave your system. Be sure the derm knows how to correctly biopsy as they need to biopsy intact skin next to the lesion not the lesion itself and they need to be looking for DH. Whether you choose to go through more testing or not is up to you. In some cases a formal...
  24. ravenwoodglass
    I watched it until he called our reaction an allergy and then went on to tell folks to 'just try the diet for a couple of weeks'. We all know we need to be on gluten for testing and two weeks off it is enough to skew the results.
  25. ravenwoodglass
    Now is when you give the diet a good strict try for a while. Don't assume that because the tests were negative that you don't have celiac. There are many reasons why false negatives occur in blood or biopsy. Doctors going by my negative blood work cost me many years and almost my life. Give the diet a try you have nothing to lose but your pain.
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