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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    The advice to go with whole unprocessed foods is a good one. I don't know where you are but if you have a Wegmans nearby they label all their gluten-free stuff with a circle G. They make shopping for prepared stuff a lot easier for me.
  2. ravenwoodglass
    I have, well had, severe DH. In the beginning I avoided it in supplements in any form. I also avoided shellfish and of course got rid of my iodized salt. I didn't worry about it in things like chips or what is added to canned veggies. I didn't have any issues with those and they didn't trigger a reaction. I could be wrong but I don't think companies...
  3. ravenwoodglass
    I have had a dental phobia for years. What finally got me able to even call another one was a bit of therapy and an antianxiety med. It isnt easy but bad teeth can lead to bad issues elsewhere. Since I had one front tooth that was abcessed and I know that can spread to the brain I decided I just had to go. You might want to check into sedation dentistry...
  4. ravenwoodglass
    Pepto Bismal works really well for me. Usually I only need one dose. The only side effect I get from it is that it makes the stool very dark.
  5. ravenwoodglass
    Different folks have different views on this issue. I am someone who has eliminated it from all topicals as well as food in part for the reasons you state. Try some gluten free hair products and see if things improve.
  6. ravenwoodglass
    It doesn't matter whether you label it gluten sensitivity or celiac. Both require a strict adherence to the diet. Both cause antibodies that attack your system. IMHO the terms gluten senstivity and gluten intolerance need to be abolished. Many think unless the label says celiac they can get away with small amounts of gluten. They can't.
  7. ravenwoodglass
    I was firmly diagnosed celiac 7 years ago. After getting gene testing done 5 years post celiac diagnosis I was found to have two genes that many would consider gluten intolerance genes but my doctors still consider me celiac. Prediagnosis I was thought to have fibro that was causing the muscle pain and arthritis with the joint pain and swelling and was...
  8. ravenwoodglass
    Did you ask if the cream sauce was gluten free? Some chefs will do a reduction where they only add cream and reduce it but others may use a roux, which is a butter and flour mix. You could just be reacting to the dairy that you are not used to. I can only speak for myself but even 7 years in my glutenings still follow basically the same pattern. The...
  9. ravenwoodglass
    I don't think you have been misdiagnosed. Your diagnosis for MS is conclusive with the bands they found with the spinal. I hope you didn't have a headache like I got when you got yours. The lack of those bands were the reason they decided I didn't have MS after all but they still didn't know it was celiac until Years later after my symptoms almost totally...
  10. ravenwoodglass
    Enterolab can test you for the other genes if you feel the need. That was how I figured out which ones I have. Some would call me gluten intoelrant because I don't have those 2 genes, but my doctors firmly diagnosed me celiac years before I had genes tested.
  11. ravenwoodglass
    You have to stop cheating. This isn't a diet that you can take a day off from, as you are finding out. You have reactivated the antibodies and your body is telling you in no uncertain terms that it doesn't want you to do it again. For me the problems you are having from being glutened last about 3 weeks. I hope it doesn't last that long for you. I find...
  12. ravenwoodglass
    Yes your regular doctor can order the bloodwork. IMHO you don't need follow up unless you are still having issues. Some do like to get reendoed to see how their healing is progressing but not all feel it is needed.
  13. ravenwoodglass
    How was your MS diagnosed? Did they do an MRI and a spinal tap? Celiac can cause brain lesions that are very similar to the lesions found with MS, they are often not in exactly the places where MS lesions would be though. I was thought to have MS for quite a while. Lesions were found in my MRI and many doctors would have simply diagnosed MS then based...
  14. ravenwoodglass
    I am glad to hear that he is at least still eating gluten bread. Do take him back to a full gluten diet, go back to wheat pasta and give him any other gluten items he will eat. You want the best chance possible for an accurate test. As soon as the biopsy is done get him completely off of gluten. You don't need to wait for the results. Keep him gluten...
  15. ravenwoodglass
    I do hope the results are conclusive. I think your plan to stay gluten free for now is a good one. Even if it turns out it is not DH there are other skin issues that we sometimes have resolve gluten free. Keep us posted as to the results.
  16. ravenwoodglass
    The gluten free diet is not a sentence to a life with no goodies, french bread, cookies, pizzas, muffins, pies, etc can all be made gluten free. I really don't feel I am sacrificing anything. Was it a bit tough to get used to in the beginning? Sure it was but I didn't have all the great folks here to help and guide me along. You do. Just the fact that...
  17. ravenwoodglass
    I get the NOW brand all the time. The only problem for me is I like them so much that I'll eat the whole bag at times in one day. The NOW brand are undyed which I prefer. They are just roasted and salted.
  18. ravenwoodglass
    If you can't see a doctor for testing then just give the diet a good strict try. However if at a future time you do want a doctor derived diagnosis it will mean you will need to go back on gluten for at least 3 months to redamage enough for an 'official' diagnosis. I am not saying you shouldn't try the diet I just want you to be aware that you have to be...
  19. ravenwoodglass
    Thanks for posting this. The list of gluten-free products including their UPC codes will be very helpful.
  20. ravenwoodglass
    I do understand your frustration. I am a seronegative celiac and my double dose of celiac related genes were not recognized as being celiac related until very recently in the US and many doctors are still unaware of any other genes related to celiac other than DQ2 or 8. I did get an 'official' diagnosis but I was close to death before that happened. I...
  21. ravenwoodglass
    If you have an active lesion 3 days gluten free will not effect the test. I tried to get the link to the NIH's Celiac Awareness Campaign but it wouldn't open. You could try doing a search with the words NIH and Dermatitis Herpeformis and see if it will come up. It should give you the info you need. I would ask the derm if he has ever biopsied for DH and...
  22. ravenwoodglass
    I am sorry you are having such a rough time. Did you check on the Tums to make sure they were a variety that are gluten free? Last time I checked not all of them were but that was quite a while ago. The suggestion for an elimination diet is a good one. You may want to see if you can find an allergist who can help you with one. Ask when you call for an...
  23. ravenwoodglass
    My advice to you is to start the diet as soon as the endo is done. I would call the office and make sure that they ordered a celiac panel for you and if they didn't request one. It won't do any harm to give the diet a shot after all the testing is over and you don't need to wait on the results.
  24. ravenwoodglass
    Start the diet now. You are done with the celiac testing and your body may give you the answer before you even go back for the results. You have nothing to lose.
  25. ravenwoodglass
    If you absolutely need to have a doctor tell you what your body is already then you have no choice but to go back on a gluten diet and redamage your body so your doctor can get the proof you want. The gene test is not a diagnostic test and there are more than just those two genes associated with celiac. It sounds like you know gluten is a big issue for...
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