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ravenwoodglass

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Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    I have better luck with calling companies than with emailing them. Here is their phone number Phone Number: 877-729-2229 When you find out could you post the answer since I am also someone who reacts to distilled gluten. Not many of us do and it is so annoying that they don't have to list the source on distilled items.
  2. ravenwoodglass
    I second the suggestion to see your eye doctor. If you can get in while this is happening that might be a good thing to do. I used to get migraine auras without the headache at times but it was more like a halo of sparkles. Not saying what you are experiencing isn't an aura though as different folks have different aura effects. Is there any chance you...
  3. ravenwoodglass
    Skylark beat me to it. Double DQ9 here and almost dead by diagnosis because of false negatives on testing. Both my children were positive on blood tests and one on biopsy. The one who was diagnosed by both blood and biopsy then got gene testing done and went back to eating gluten because the tests didn't show either of the 2 most common celiac associated...
  4. ravenwoodglass
    Fasting in itself is not bad when done properly. I fast frequently myself. Fasting as a way to allow yourself to eat gluten is the problem. If you are having reactions to gluten then you need to stay away from it whether you have a formal diagnosis or not. Fasting does not stop the antibodies from their attack. Only being gluten free will do that.
  5. ravenwoodglass
    If your Mom is a diagnosed celiac and you are responding well to the diet you really have your diagnosis IMHO. If you want to find out the genes you have then go ahead and do a gene test. Just be aware that not all celiacs have one of the two most common celiac associated genes. Also since many carry the associated genes but never develop celiac it isn't...
  6. ravenwoodglass
    The poor little guy. Perhaps a second opinion from a different ped GI might be in order. Just throwing the thought out there that maybe they could check and make sure he doesn't also have some sort of connective tissue disorder that is affecting the bowel. The reason I say that is because I have one and have suffered minor prolapse but nothing to the extent...
  7. ravenwoodglass
    There is also the issue of residue being left on your hands after washing the dishes. How many of us wash our hands with a for sure safe hand soap after washing the dishes. My feeling has always been better safe than sorry when it comes to gluten exposure and since there are so many safe alternatives it just makes sense to me to use one of them.
  8. ravenwoodglass
    That's great news! So happy for you all and thanks for letting us know as it gives hope to others whose children might also test negative that yes gluten can still be an issue. Sounds like you have a great doctor.
  9. ravenwoodglass
    There are so many of us who have walked in your shoes. The changes in your health and well being after you have healed will be proof. It took only 6 months before the changes in me were so obvious that it convinced the rest of my family to be tested. I hope you heal quickly. We are here to help you any way that we can.
  10. ravenwoodglass
    There are some folks who consider both to be different presentations of the same disease. Both are just as serious. If you have been gluten free and the challenge you are doing is causing a severe reaction you really have your answer no matter what it is labeled. Have you talked to the allergist about your reactions? My allergist saved my life because I show...
  11. ravenwoodglass
    I agree completely. It sounds like your reaction to the challenge is getting pretty severe. If you got relief from the diet and are reacting this badly to the challenge you have your answer as far as whether gluten is something you should be consuming. Get to your doctor as soon as you can and let them know what is going on. Your doctor may tell you to stop...
  12. ravenwoodglass
    Sounds like you have a good doctor and I hope the issue resolves for you quickly. Thank you for the update.
  13. ravenwoodglass
    If you mean you were accidentally glutened 16 days ago this may well be something else. Swollen lymph nodes in your neck should not impact your breathing, at least in my own experience. All my lymph nodes (neck, under arms, groin etc) were swollen for years and the doctors figured it was from my 'picker's acne' which was really DH and would often get infected...
  14. ravenwoodglass
    If you are still in the process of being tested you should NOT be gluten free or gluten light yet. It will ensure a false negative and then he will really be doing an 'I told you so'. So do go back to eating a regular gluten filled diet until all testing is done. There are a lot of naturally gluten free foods out there, steak and potatoes, chicken, fish...
  15. ravenwoodglass
    Okay, whatever was causing this last night and when I first logged in this morning seems to have ended. Thankfully. I guess Norton must have had a glitch they have fixed. (sigh of relief)
  16. ravenwoodglass
    Norton antivirus is blocking me from coming here saying it is a fraudulent website with security issues. Have we been Hacked?
  17. ravenwoodglass
    If possible you really need to get the complete panel. I don't know why your insurance company won't let the doctor do both endo and colonoscopy at the same time as that is a much less expensive way to go. You might want to call the company and question that. You may find it is the doctor that wants to do it that way as there is more money for him when the...
  18. ravenwoodglass
    I'll have to try the parchment paper next time. I've never used parchment but it is worth a try. I was thrilled to discover these when I had classes at all hours and often didn't have time to cook. They sure do beat peanut butter on toast after a busy day. I have to drive a half hour each way to get to a store that has them but it is worth it to pick up...
  19. ravenwoodglass
    Every other month or so I go to a larger Wegmans that carries these. They are really good for a prepared food. The only problem I have with them is that when you cook them according to directions in the microwave they stick to the paper towel. I just had the pesto chicken and was in a hurry so I didn't wrap it in foil and bake in the oven like I usually do...
  20. ravenwoodglass
    After my gluten challenge which caused such a severe reaction, including a GI bleed, that I couldn't make it to the biopsy procedure. Despite my negative blood work and not being able to do the biopsy my doctor then said, "you are celiac" and apologized profusely for demanding the challenge and only doing a colonoscopy when I first went to him and was still...
  21. ravenwoodglass
    I have a bracelet that hangs from my keychain along with a tag for my allergy to penniclyn (I know that's badly mispelled but don't want to disturb the dog sleeping on my lap to look at the tag).
  22. ravenwoodglass
    I didn't have a biopsy until five years after diagnosis and I had healed well by then. My doctor diagnosed me without a biopsy because he demanded a gluten challenge which came close to killing me. Literally. The day of the biopsy I was laying on the bathroom floor bleeding. If grain free is working well for you then keep it up. You can always try adding...
  23. ravenwoodglass
    And I bet there wasn't even a teeny bit of that pnut butter left on it. This reminded me of a big yellow lab I had. He could gulp down a big bowl of stew and leave every pea in it licked clean in the bottom of his bowl. He wouldn't touch those peas but he would steal all the ripe tomatoes out of my garden when I wasn't looking. I also reminds me of an...
  24. ravenwoodglass
    While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.
  25. ravenwoodglass
    It is a 5 lb bag and since my girl is only about 16 lbs (and a bit chubby) it lasts her about 3 weeks.
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