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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I think the gluten content would vary depending on how many other ingredients were in them. Even small amounts of gluten are an issue with us. More gluten doesn't always mean a stronger reaction. You do need to keep in mind also that gluten reactions can be delayed. You might have that gluten-free pasta for dinner but not react for a couple days.
  2. ravenwoodglass
    I agree completely. OT That kitty in your avatar looks sooooooo comfy and relaxed. All he needs is a remote to go back and forth between the game and Animal Planet
  3. ravenwoodglass
    Have you tried to find an allergist who deals with food intolerances as well as true allergies? Mine saved my life since I show up false negative on celiac blood work. The allergist will start you out with 5 or 6 foods in pure form and then have you add in one food a week, in pure form, to see if you react. Although it is boring and time consuming it can...
  4. ravenwoodglass
    Yes you can go gluten-free after the endo is done. You don't have to wait for the doctor's results if all of your celiac related testing is finished. Do be aware that false negatives are not uncommon especially if you were gluten free before testing and your challenge was a short term one. Since the challenge has given you a reaction your body has already...
  5. ravenwoodglass
    I had to have oral surgery a couple years ago and the surgeon prescribed Hydrocodone-APAP 5-500 the generic for Vicodin 5-500. It was made by Mallinkrt Pharm and at that time it was gluten safe. I had no problems with it but only needed it for the first two days after surgery. Doc prescribed 1 -2 every six hours but one was all I needed. I agree you should...
  6. ravenwoodglass
    That feeling of constant hunger is not all that unusual for us. It can be caused by the body not being able to absorb the nutrients it needs from the food we are eating.
  7. ravenwoodglass
    He sounds like a great doctor. You may want to ask him what he usually prescribes and call your pharmacey and get the maker if the drug. Then you can call the maker yourself to be sure. When I had my oral surgery the doctor gave me a prescription a week ahead so I could take it to the pharmacy and check it before it was filled. He said that way if they...
  8. ravenwoodglass
    I also like Tom's of Maine. One thing I like about them is they show the source of every ingredient they use on the box. Don't know if it is available where you are. Keep in mind also that just because an item doesn't say it is gluten free that doesn't always mean it isn't safe. It just means they don't test for gluten.
  9. ravenwoodglass
    If she has been ill and has improved greatly on the diet your ped may give you the documentation you will need without having to take her to a GI. The ped has seen her issues and will see them resolve on the diet and be sure to mention the reactions she suffers when glutened. Since celiac is really not solely a GI disorder it is not just a GI that can give...
  10. ravenwoodglass
    Thanks guys. The thermos idea is a good one and I don't know why I didn't think of it before myself. He's a good freind and I don't think I have made it clear enough how severe my reactions are and I really should 'buck up' and do so. It is hard for people not in our shoes to understand how sensitive we can be and I guess I need to grow a spine and be frank...
  11. ravenwoodglass
    I know there isn't really an answer for this but I just need to vent I guess. I have a close freind, really my only freind, who eats out for just about every meal. When we get together he always wants to stop and get coffee or something to eat. I am incredibly sensitive to CC and rarely eat out. I have tried getting coffee a few times but I hate it black...
  12. ravenwoodglass
    Even though she tested negative she could still be celiac but even if she is what they term 'gluten sensitive' she could still be that sensitive to CC. I am a double DQ9 and didn't show up in blood work even when close to death. I was finally firmly diagnosed celiac. I am very, very sensitive to cross contamination. In addition to the possible CC issues...
  13. ravenwoodglass
    If you haven't been tested for celiac you should do so. However you have to be eating gluten regularly for the tests to have a chance at being accurate. Even a short time gluten free can throw them off and some folks will have a false negative even when they have never been gluten free. After all celiac related testing is finished give the diet a good strict...
  14. ravenwoodglass
    Yes. Mostly hands and lower arms. Sublingual B12 helped me quite a bit even prediagnosis.
  15. ravenwoodglass
    To see if soy is an issue it is best to eliminate it completely for a bit and see if she improves or if issues get worse when you add it back in.
  16. ravenwoodglass
    Do keep him on gluten until the endo is done otherwise you risk a false negative. There can be false negatives even on a full gluten diet though. If the celiac panel wasn't redone on the recent tests call your ped or the GI's office and demand they redo them. Just because they were negative a year ago doesn't mean they will be now. After his repeat blood...
  17. ravenwoodglass
    Celiac causes inflammation. Your doctor IMHO is wrong. For me the only thing that gets rid of gluten induced inflammatory pain is time although I do find asprin to be helpful. I hope your painfree soon.
  18. ravenwoodglass
    Some of us will never show up positive on tests. I am one of them and was close to death by the time I was diagnosed. You have done the best 'test' there is which is dropping gluten and then challenging. You are clearly reacting so go with what your body is telling you. I hope you will listen to your body. Read as much as you can here and ask any other questions...
  19. ravenwoodglass
    I had DH as a child and had to have surgery on each leg that required long term casts. Back then plaster casts were all they had. They use a sleeve under the cast and I had no issues from them other than muscle atrophy. Nowadays there are many forms of casts including some that are removable to bathe the areas. IMHO it is not a concern.
  20. ravenwoodglass
    Glad you found something to use that you know will be safe. Just have to ask... what is the costume idea?
  21. ravenwoodglass
    Is this an adhesive? If so is it meant for use on the skin? If not then maybe check into eyelash adhesive instead.
  22. ravenwoodglass
    The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test...
  23. ravenwoodglass
    Many celiacs with DH need to delete iodine to have the antibody action stop in the skin. Many can add it back in after the DH has calmed down. I just had to drop iodized salt for a while but now am able to tolerate it. My doctor will not allow me to have any testing that requires it to be injected though and like Rose if I use it on my skin my skin blisters...
  24. ravenwoodglass
    Those lesions you speak of are called UBO's or Unidentified Bright Objects. They are found in folks that have gluten ataxia. Many neuros are clueless about them. Folks that have neuro issues from gluten often need to be very strict with the diet. The neuro issues can also show up long before the usual gut symptoms strike. I had neuro problems and DH from...
  25. ravenwoodglass
    There is also the possibility that Mom herself is an undiagnosed celiac and just doesn't have the energy at the end of the day to do much other than go with what is quick and easy and what the family is demanding. There are times when the poor diet leads to feeling unwell and unable to cope with just day to day existance and it ends up being a vicious circle...
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