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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    From your other post it is your total IGA that is elevated. It is good that your doctor is addressing that as in some instances that can be caused by something serious although many times the cause is benign. I hope you get some answers soon.
  2. ravenwoodglass
    Yes it is the DQ test that I am referring to. I had been diagnosed 5 years before that with celiac so I didn't do the gluten testing. Enterolab can do testing for gluten antibodies, if you want it done simply contact the web site for information. They do not diagnose celiac but they can tell you if you are making antibodies to gluten.
  3. ravenwoodglass
    Unless your willing to go back on gluten for about 3 months there isn't any test that can tell you for sure and even if you do you could still have a false negative. The best test IMHO is your response to the diet. Your body is alreay giving you the answer.
  4. ravenwoodglass
    I almost died because his criteria was what was my doctors considered to be needed for diagnosis. I almost was because I am seronegative and no doctor would even endo for celiac with negative blood tests. I also have to disagree with the need to have '(HLA)-DQ2 or DQ8 genotypes' since there are celiacs that don't carry those two genes and new celiac associated...
  5. ravenwoodglass
    Since false negative testing for celiac is not uncommon many of those who have symptoms but are not diagnosed could well be celiac. I had the IBS diagnosis for most of my life but because I test negative for celiac in blood tests no one would look any further. My new GI stated that he advises folks who test negative to give the diet a strict try for at least...
  6. ravenwoodglass
    I am sorry that was such a dismal experience for you. I had the same awful experiences when I first went out to dinner after diagnosis and they were really top shelf restaurants so we spent a fortune for meals I couldn't eat. One even has a 5 star rating but they were clueless. Do bring something with you whenever there is a chance you might need to eat...
  7. ravenwoodglass
    I forgot to mention that one of the most effective things for me was a topical rather than something I took orally. Tiger Balm seemed to help a great deal if you can find it. Stuff like BenGay also gave some relief along with hot compresses.
  8. ravenwoodglass
    Well everyone is different but for me that would mean a migraine that lasts for days, a bout of severe, and I mean suicidal depression, followed by a few weeks of increased anxiety, a flare of my joint and muscle pain, severe stomach pain followed by severe painful D a day or two later with bleeding for three days after, a breakout of blistery lesions, brain...
  9. ravenwoodglass
    Are the Tums you are taking gluten free? Not all versions are. Pepto Bismal name brand liquid is safe. Are you being careful about cross contamination and going with mostly whole foods? If not you should be. It is a good idea to avoid dairy for a bit while healing and some of us are sensitive to soy. Soy gives me incredible stomach pain which pepto helps...
  10. ravenwoodglass
    I used Enterolab. That was back when they were allowed to ship to NY state, they aren't now. I didn't have it done as part of my diagnosis. I had it done 5 years after because my blood and biopsy positive daughter, who had great success with the diet, decided to get retested in college. She was tested at a very well respected hospital where she went to school...
  11. ravenwoodglass
    The ensure may also have soy which is another protein we are also sometimes sensitive to.
  12. ravenwoodglass
    What you really need to do is to get strictly gluten free. I know it's hard but that is your answer. You may need to make the house gluten free to do that but your health is more important than the kids having cheerios. It won't hurt the rest of the family to be gluten free in the home and will help you end your pain.
  13. ravenwoodglass
    A tubal ligation will not effect your periods. They are not removing your ovaries they are blocking or cutting the tubes. A person will still have periods after a tubal unless the ovaries are removed. Then the person would go through menapause. Celiac can mess with our hormones and can cause an early menapause but some women will have their menses resume...
  14. ravenwoodglass
    Yea it is a pretty easy test. Basically you go in, go to sleep, wake up and go home. You do have to have someone drive you there and they have to wait and take you back home again.
  15. ravenwoodglass
    This is the place to whine when you need to. If anyone can understand those feeling we can here. I know it is hard to look at your diagnosis as a good thing but once you are on the diet you will be staving off a lot of issues that those of us who went undiagnosed for years have had to deal with. Read a few signatures and be glad they won't be yours in ten...
  16. ravenwoodglass
    I'm glad you have access to a place to cook as that helps. Do get your own pans and make use of tin foil. If you need any ideas for stuff you can cook easily just ask and someone is sure to have an idea for you. Some of my favorite non cook snack stuff is gluten free pretzels, Snyder makes good ones and so does Glutino, raisins, nuts and chocolate chips all...
  17. ravenwoodglass
    Will your dorm let you use a toaster oven? Some will some won't and you can cook a lot of stuff in one of those. Are you able to at least have a toaster, hot plate and microwave in your room? If you are that will help. If you have insurance can you at least get the blood testing done before you start the diet? Some schools will make some allowances for someone...
  18. ravenwoodglass
    I hope the allergist deals with intolerances as well as allergies. You may want to ask that when you talk to him. My allergist literally saved my life, no exaggeration. He guided me through a very strict elimination diet which pinpointed the gluten reaction and then refered me back to my useless GI for confirmation. I have a feeling, but I could be wrong...
  19. ravenwoodglass
    It is hard at first and it does take some time to heal. What are you eating? Stuff like steak or chicken with potatoes and veggies and fruits are going to be safe and are easy to cook. If you have nonstick pans that are scratched do get a new one to cook. Chicken cooks easily in the oven and you can just put it on a piece of tin foil to prevent any CC issues...
  20. ravenwoodglass
    Celiac and gluten intolerance are autoimmune disorders. Your body makes antibodies to gluten and even a very small amount of gluten will keep those antibodies active. To really get benefit from the diet you can't just cut back on gluten you have to eliminate it completely. That means avoiding wheat, rye, barley and oats and taking care to prevent cross contamination...
  21. ravenwoodglass
    I had this issue at my daughters wedding not too long ago. While the person that catered the wedding said everything would be gluten free since I had a long drive the next day I wasn't sure I wanted to risk it. I ate before I went and made sure I had something in my room at the hotel and then ate mostly the fruit cup at the wedding. They were more than happy...
  22. ravenwoodglass
    It is not a bad idea to have an emergency supply of stuff you can use. I live in an area that gets a lot of snow and sometimes loses power, once for a week. I always make sure I have pnut butter and crackers and some tinned fruit and veggies as well as water etc. One thing you do want to do is rotate out the stuff in the kit periodically. You don't want to...
  23. ravenwoodglass
    What led you to think you might be celiac to begin with? I am assuming you must have had symptoms or you wouldn't have done any testing. If you were gluten free or gluten light then of course your tests would be negative. Even on a full gluten diet some of us have false negative tests. I don't agree with the doctor that if you are gluten free that insures...
  24. ravenwoodglass
    I think I agree with your doctor. Go on the diet, get him to do testing of your vitamin and mineral levels to check for deficiencies and a Dexta scan to check for osteoporosis and heal. Your response to the diet is the best test there is and you must be tired of seeing obnoxious doctors by now that are clueless at best and nasty at their worst.
  25. ravenwoodglass
    Please call your doctor and ask him to give you a lab slip for a complete celiac panel. Unless you have been gluten free for a while and if I remember correctly you haven't been. There is no reason for him to hold off on at least the blood test. I understand how overwhelming it is as I waited sick for years before they even thought to test and more very painful...
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