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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    There can be a number of reasons why we would show a false negative. I would encourage her to give the diet a good strict try after the testing is complete. It sounds like she could identify with my sig. If I had to wait for positive blood work I would be dead. It took a very long time for me to get diagnosed and interestingly my gene is one that is considered...
  2. ravenwoodglass
    Jason did they scope the other end also? I would wonder if they did if you had a reaction to the prep. I would contact your doctor about this immediately and I would not take anything to try and remedy this until after you see the doctor.
  3. ravenwoodglass
    DH is celiac, someone diagnosed with DH needs no further testing for diagnosis. I would make an appointment with a derm and ask them to biopsy for DH. They need to biopsy the area next to the rash not the rash itself. EE is also not uncommon in celiac. If you have symptoms do go ahead and try the diet. False negatives on blood and biopsy are not uncommon...
  4. ravenwoodglass
    Have you tried changing toothpastes? It may not be a gluten issue but a sensitivity to some other ingredient. If you can't find a toothpaste that doesn't bother your mouth baking soda works well. I can't use a mouthwash that contains any alcohol. I use Act mouthwash in the no alcohol formula. That doesn't sting my mouth like listerine or other alcohol based...
  5. ravenwoodglass
    It may be considered gluten free but I know the one time I tried anything with wheat grass it made me just as sick as any other wheat based item. I'm not alone in that many others have also reacted. It is not something I would advise consuming.
  6. ravenwoodglass
    How many biopsies did the doctor do? Have you seen the actual results? If not you should get a copy. Some doctors don't want to diagnose until the villi are totally destroyed and will call a milder blunting normal. You could go with Enterolab and get their antibody stool testing and gene panels done. I would consider that also if the little one shows negative...
  7. ravenwoodglass
    Yea that sounds pretty typical, don't be surprised if you have D at some point in the next day or two.
  8. ravenwoodglass
    Sounds like you found a good doctor. Hopefully he will be able to help you get your remaining issues resolved. I don't know if you have used a home glucose meter before but if you haven't they aren't hard to get used to. I always ran my fingers under hot water for a minute or two to help bring the blood to the surface, then dried my finger throughly for...
  9. ravenwoodglass
    Distilled gluten grains would be in alcohol and distilled vinegar. The vinegar would be used in stuff like ketsup, barbeque sauce, pickles etc. If you live near a Wegmans they will not put a circle G on an item if the vinegar is made from a gluten grain. Heinz distilled white vinegar is made from corn so if you like to make stuff with that type of vinegar...
  10. ravenwoodglass
    You need to go cold turkey. You want to stop the antibodies and even a little bit will keep that antibody reaction active. It is hard at first but you can do it. Ask any questions you need to, read as much as you can and feel free to vent if needed.
  11. ravenwoodglass
    It took about 6 months or so for me but I still had bad days until I eliminated soy also. For me that was the final key to complete resolution. I think it takes a while for the antibodies and the inflammatory reaction to resolve. I also had to become super strict, including dropping anything with distilled gluten grains and I also have to avoid 'natural...
  12. ravenwoodglass
    I only tried an item with wheat and barley grass once, I'll never do it again. I might as well have stopped at Dunkin Doughnuts.
  13. ravenwoodglass
    That's great news about the CT!
  14. ravenwoodglass
    Garnier, Suave and Dove will all clearly label gluten ingredients. I use the Garnier hair care products including their color. Suave makes some nice lotions, although you could call the company about the one you are already using. Don't ask if it is gluten free, your liable to have them tell you not to worry because your not eating it, tell them you need...
  15. ravenwoodglass
    Jason have you ever thought of looking into a celiac specific singles group? I want to get back out there myself but have the same fears because of this disease. I did a search a short while back and found a couple groups that are just for us. Even if you don't find the 'love of your life' you may find a few dating possibilities, penpals or friends that...
  16. ravenwoodglass
    If your doctor accepts the celiac diagnosis and will do the follow up nutrient level and other testing that should be done in my opinion that would be enough. If you are now gluten free you also would need to go back to a full gluten diet for at least 6 weeks to 3 months to try and get the most accurate biopsy possible. Even then a chance of false negative...
  17. ravenwoodglass
    I haven't ever had an issue with Kinnie's products and I am very senstive. They are one of the few brands I can eat because they don't load everything with soy. I am not at all familiar with the meat brand you mention so I can't answer for that. If it is fresh unprocessed meat there should be no issue as long as no broth has been added.
  18. ravenwoodglass
    Gluten or no gluten the last thing you should be drinking if you have stomach pain is alcohol of any kind. It irritates the stomach lining. If you can do without it for at least a few weeks it will likely help. One note about the marshmallow, if you do take supplements or any type of meds make sure that you have some time between taking them and the marshmallow...
  19. ravenwoodglass
    I just noticed in your sig that you have been doing a gluten challenge. How has it been? Have you reacted?
  20. ravenwoodglass
    I used to get those type dreams also. I usually would be standing over the sink washing up and my teeth would be falling like marbles into the sink. I also used to grind my teeth, especially in my sleep which of course contributed to TMJ, fractured teeth and jaw pain. I always attributed the dreams to the grinding, which I don't do any more since I went...
  21. ravenwoodglass
    It sounds like you also have an allergy to wheat in addition to celiac. I would talk to an allergist about this as you may want to get and carry an epi pen just in case.
  22. ravenwoodglass
    The test is pretty simple. Most doctors will give you a sedative or do a 'twilight anesthesia'. You will not likely remember anything from the test. Some folks have a bit of a sore throat afterwards but not everyone. Do make sure your doctor is taking lots of biopsies and you should start a trial of the diet after the biopsy is done, you don't have to wait...
  23. ravenwoodglass
    Have you checked your toiletries, shampoos and conditioners, makeup, all medications need to be checked, generic scripts need to be checked every refill. Supplements need to be checked, some will say gluten free but still have wheat or barley grass so they are not really safe despite the label. Do you drink Rice Dream rice milk? It says it is gluten free...
  24. ravenwoodglass
    It's good that now you know. With her having a double dose of the same gene it is important that family members on both sides be tested whether they think they have symptoms or not. They may not do it but they should know that it is something that should be done. I hope things improve quickly.
  25. ravenwoodglass
    That is true but there are a few celiacs who will react to distilled gluten grains. They seem to usually be ones who have either DH or significant brain impact.
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