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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    If the rash was incredibly itchy and left purplish scars that are slow to fade it might be DH. If you have DH you have celiac, period no more testing needed. You may want to consider eating enough gluten for the rash to come back and then seeing a derm to get it biopsied. Do make sure that the derm is familiar with biopsies for DH as they need to biopsy next...
  2. ravenwoodglass
    It is my understanding that yes if that test it positive it is pretty certain the person has celiac even if the TtG is negative. There are newer tests, DGP, that have been developed because of a high rate of false negatives on the Anti-gliadin but when it is positive it is positive. If your doctor will diagnose so your child will be kept safe in school without...
  3. ravenwoodglass
    I don't know what the place may serve but if you feel you have to eat there might I suggest that you eat before you go and then pick at (or push around) a salad and perhaps some fruit. Haven't you told your family you are celiac? If you have people that love you will understand if you go with a full belly and just enjoy their company. If you haven't told...
  4. ravenwoodglass
    I stopped dyeing my hair around six months ago but before that I used Garneir products. They are free of gluten ingredients last time I checked.
  5. ravenwoodglass
    Simply put welcome to the gluten-free family. You are in the right place to learn what you have to do to heal and keep safe. Ask any questions you need to ask. You should also advise all your first degree relatives to be screened for celiac.
  6. ravenwoodglass
    What are the ingredients?
  7. ravenwoodglass
    I would advise waiting on the oats until you have been feeling better for at least a couple of weeks. When you do add them back in eat them every day, if possible 2 or 3 times a day, for a week. If you are still feeling fine then keep them in.
  8. ravenwoodglass
    It will get better. Something that helped me was seeing a physical therapist. It was a big help in regaining my balance. He had a machine that simulated a surfboard and it was a big day when I was able to stand on that without holding on to anything. You might find a PT helps the healing process along. Hopefully it won't be long until you are back to teaching...
  9. ravenwoodglass
    Sorry this happened to you. It is frustrating. Generics can change binders at will and gluten ingredients don't have to be disclosed on meds or supplements. So those need to be checked at each refill. There is also the issue that wheat starch would be considered gluten free so I always ask if there is any wheat in the med rather than asking about gluten...
  10. ravenwoodglass
    I go to the movies once or twice a year. When I first went to one I asked to see the popcorn oil and they were nice enough to bring it out for me. Long story short the popcorn oil was safe but I do skip the butter flavored stuff that gets poured on it. We can't get a real person on the phone just a recording so I went in early before they got busy to ask...
  11. ravenwoodglass
    I had severe ataxia at diagnosis. It does take some time to heal but I could walk unaided by about 6 months. For a couple years after diagnosis I would be off balance for a couple weeks after a glutening. I have been gluten free now for almost 10 years and now recover much quicker and the ataxia isn't as severe on the rare occasions that I do get glutened...
  12. ravenwoodglass
    The couple of days before you reacted are not unusual for a gluten reaction. If you do want to do more celiac testing stay on the diet you are now on, with all the kashi and whole wheat bread etc. for a couple to 3 months more and then get the celiac screening done. You could still have a false negative though. When you say your first panel was only slightly...
  13. ravenwoodglass
    Sorry you are going through so much. Perhaps it may be time to find a new doctor?
  14. ravenwoodglass
    So sorry for your loss. My thoughts are with you. ((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))
  15. ravenwoodglass
    I think you are feeling better now because you need to be gluten free. Low carb and gluten free are not the same. This is particularly the case if you are eating the prepared foods that are sold for these diets. While some might be gluten free many are not.
  16. ravenwoodglass
    Will your Ped diagnose with the Enterolab testing or give you a note for school? If not do get her blood work done before you take her gluten free as she will need accomodations at school.
  17. ravenwoodglass
    With people who have gluten ataxia a brain MRI will show what are called UBOs or Unidentified Bright Objects that are similiar to the lesions seen in MS but not in the same places. Not all doctors are aware of what UBOs signify and you may hear that they are meaningless. They are not. I would have been diagnosed 5 years before I was if my neuro hadn't been...
  18. ravenwoodglass
    You mentioned in your other post that you have started the diet and are feeling better. With that combined with positive blood work it sounds like you are one of us. Since the biopsy can have false negatives and positive blood work trumps negative biopsy I think you have a good doctor who caught this early. Please note that if you do decide to do more tests...
  19. ravenwoodglass
    I can't say the same is true for you but in my case the protein and also trace blood is from kidney damage from undiagnosed celiac. For myself there has been no further progression since I went gluten free but it hasn't gone away either. I should note that if I consume soy it does cause an increase in 'bubbles' and bleeding along with other reactions. This...
  20. ravenwoodglass
    One reason to get it done it that children and young adults with celiac need special accomodations at school and college. Do not have the child go gluten free until after all testing is done as that will for sure cause a false negative.
  21. ravenwoodglass
    First welcome to the board. People with any national background can get celiac it doesn't exclude Asians or Russians. Have you had an endoscopy? If not it would be a good idea to have one and tell your doctor you suspect celiac and ask him to take at least 6 to 8 biopsies from different areas. When all testing is done do give the diet a good strict try....
  22. ravenwoodglass
    Best way to find out is to call the company. I usually say that I am allergic to wheat rather than gluten since if they do use wheat starch that would be considered gluten-free and sometimes folks that don't have celiac think we can't have corn (it also has gluten but a different kind). Open Original Shared Link Tel: 1-800-631-2174
  23. ravenwoodglass
    There can be a link to seizures and other brain dysfunction. I don't have a lot of time to post links but if you go to a search engine and type in the words celiac and neurological you should find a lot of info. I have posted info before so a board search might be helpful also. Be aware most doctors are not informed about the possibility of celiac having...
  24. ravenwoodglass
    How did your body react when you had the eggs? If you want to add them back you might want to eat them, in pure form not in anything else, for a week and see how you feel. When you do this don't cheat with anything else that you are not supposed to be having or you won't know if your reacting to the eggs or the other items. If after a week on ONLY your safe...
  25. ravenwoodglass
    I have a feeling the list would be pages long. Plus there is the issue that companies may change who the get different stuff from on a frequent basis so the ingredient may be fine with one batch and not with another. Makes me glad I don't care for brown rice. And here we all thought going with brown rice was the healthiest option!
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