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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Happy Birthday. Have a wonderful day!!!!!
  2. ravenwoodglass
    You can now go gluten free to see if it helps as long as you have had celiac blood work done. If you haven't had the celiac panel call and request one and then go gluten free to see if it helps. False negatives on both blood and biopsy are not uncommon at all but your body knows the answer.
  3. ravenwoodglass
    I have my tag on my car keys. If you have multiple allergies yours could tell an emergency responder to check for a card in your wallet. You can also get a form, perhaps from the Red Cross, that can have your medical info that can be posted on your frig at home. If you want one to wear go to your local jewelry store and find an ID bracelet or tag in a metal...
  4. ravenwoodglass
    Yes this is why it is not required to be on the label as it is not an ingredient and the wrapper is not meant to be consumed. I would call the maker and ask as it could be the mold used and not flour.
  5. ravenwoodglass
    If your symptoms have improved gluten free then no one can force you to challenge for the 3 to 4 months needed for a biopsy. Did you have positive blood work? If you did then personally I would only challenge until I reacted and skip the biopsy.
  6. ravenwoodglass
    In addition to the iron and sublingual B12 also add in a biotin supplement and make sure that anything you are using on your hair is free of gluten. It usually takes at least 3 months to see any noticeable regrowth. I know how disheartening it is to lose so much hair but it should grow back. Do be very strict with the diet though as for some of us the hairloss...
  7. ravenwoodglass
    They would not have to disclose if it is flour because it is not an ingredient in the salami and yes it was either flour or mold. Here is a link to learn how salami is made and cured. Open Original Shared Link "The curing process is determined by the climate of the curing environment and the size and style of casing. After fermentation, the sausage...
  8. ravenwoodglass
    Well your in the right place to gripe so feel free to vent all you need to. It is a big adjustment at first and if folks are not celiac it is hard for them to understand that it means a lot more than just not being able to eat wheat bread. We all have moments when we want to deck someone. Take a deep breath or grab a pillow and scream into it and then come...
  9. ravenwoodglass
    They hopefully took your poison meal off the tab. Do drink plenty of water and I usually take Pepto Bismal liquid and asprin. Hopefully your reaction will be over soon. If you feel like sleeping do sleep and a hot bath or shower may help with the inflammation in your joints and muscles. I also find something like Tiger Balm or a heating pad to be helpful...
  10. ravenwoodglass
    I know what I have is ataxia because I have the brain lesions that are diagnostic of it. For me the ataxia is a balance issue. I will get a sense that I am falling to the right within a short time of injesting gluten. I also have trouble with speech but both are now rare occurances. It turned out my parathesias were due to vitamin deficiencies and those...
  11. ravenwoodglass
    I am a blood test negative celiac. No doctors wanted to biopsy because of that. I am a firmly diagnosed celiac though. When gluten was an issue when a doctor guided elimination diet caused a severe reaction I was referred back to a GI doctor who demanded a second challenge. Well I had such a severe reaction to the challenge, including a severe GI bleed I...
  12. ravenwoodglass
    This is what I would advise also. Do you personally know the hostess? She could be a real witch and have blown things out of preportion with your nephew. If you are not comfortable attending then don't. You are not obliged to. If you do want to go perhaps contact the restaurant itself and explain your need for something gluten free if it is available. I...
  13. ravenwoodglass
    Both blood tests and biopsy have high negative rates so if one or the other is positive you do have celiac. Not all doctors will require a biopsy if the blood tests are positive. It is overwhelming at first so do read as much as you can here and ask any questions you need to. As far as how much recovery folks have a lot depends on how long they went undiagnosed...
  14. ravenwoodglass
    Actually false negatives are far from rare. The rate is close to 20 to 30% and may be even higher in children. When all testing for celiac is done a trial of the diet is always advised.
  15. ravenwoodglass
    The Progresso soup also likely has soy in it. That can also be an issue for some of us.
  16. ravenwoodglass
    I don't know if it will or not. For me it helps with stomach pain but not with the cramping. The only thing that helps the cramping with me is a D episode. I hope you get some relief soon.
  17. ravenwoodglass
    You could try Pepto Bismal liquid if that is something you can take. It is gluten free and helps a great deal for me when I get CC'd by gluten or soy. Glad your testing is soon but don't go gluten free until all celiac related testing is finished. I also had symptoms that came and went for years before things became constant and I don't think that is unusual...
  18. ravenwoodglass
    Glad you caught the mistake. I try to be very clear when I am in a restaurant, which is very rare. Generally I tell them I am allergic to wheat rather than gluten as they seem to understand that better. Hope your evening was a good one despite the disappointment with the lamb. You should also ask if the fryed potatoes are done in a dedicated fryer or if they...
  19. ravenwoodglass
    Does it have soy sauce in it? If it does then it would not be gluten free as soy sauce is made with soy and wheat.
  20. ravenwoodglass
    That sounds like a wise thing to do. I hope everyone is feeling better soon.
  21. ravenwoodglass
    Your celiac and your doctor is misinformed (as most are) about how many of us don't have one of those 2 genes. We have a lot to learn about the genetics of celiac but we do know that there are celiacs without one of those 2 associated genes. I am one of them. Do stay strict with the diet as the result of 'cheating' is liable to make you very ill. It would...
  22. ravenwoodglass
    If your going gluten free I don't think you can use that bread. The ingredients I bolded are not safe for us. INGREDIENTS: Organic Sprouted Whole Wheat, Filtered Water, Organic Malted Barley, Organic Sprouted Whole Millet, Organic Sprouted Whole Barley, Organic Sprouted Whole Lentils, Organic Sprouted Whole Soybeans, Organic Sprouted Whole Spelt, Fresh...
  23. ravenwoodglass
    Sorry your having to go through this. Yes you should eat gluten daily and at least 3 to 4 slices of bread worth. If you are reacting to gluten you have an issue with it so after all testing is done you should go strictly gluten free no matter what the test results are. False negative testing is not uncommon for both blood and biopsy. The DGP is one test you...
  24. ravenwoodglass
    What were your levels for the B12? Some doctors consider anything above 250 normal while they are realizing now they need to be over 500. If you are below 500 then do try sublingual tablets for a bit. If your skin issues are DH then you also need to limit iodine for a while. While you don't have to be injesting both iodine and gluten to have a DH ourbreak...
  25. ravenwoodglass
    First off your friend is flat out wrong. If you have been gluten free then the endo is unlikely to positive. We do need to be on a full gluten diet and if you have been gluten free for any length of time then you would need to do a gluten challenge for around 3 months. Have you had the celiac panel done, hopefully before you went gluten free? Celiac is...
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