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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Once all your testing is done do try the diet no matter what the gene and other tests show. Gene tests are only a small part of the picture as folks can have the associated genes and not have celiac and people can have celiac and not have one of the two most commonly associated genes.
  2. ravenwoodglass
    You have had positive blood work so you do need the diet no matter what the biopsy results. Yes there have been folks that were told everything looked fine and then had the biopsy show up as positive but false negatives are not uncommon. You don't need to wait for the biopsy results and should get on the diet today.
  3. ravenwoodglass
    For some of us this will be a hard poll to answer. My D, depression and migraines were gone within about a week but joint pain and stiffness, muscle pain, ataxia took much longer to resolve. Like closer to six months. I would still have occasional issues when I thought I might be glutened but it turned out to be a sensitivity to soy. I do have some damage...
  4. ravenwoodglass
    It is tough at first. It is a big adjustment for you and for them. It will get easier in time when you are feeling better and your family can see the differences in you. (((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))
  5. ravenwoodglass
    I would take 3 small handtowels or washcloths, wet them and put soap on one then seal them in seperate plastic baggies. One to soap, two to wipe soap off. You know they will be safe and freindly to the enviroment.
  6. ravenwoodglass
    If your biopsy is in 3 months go back on gluten now. Eat at least 3 servings a day until the biopsy. Be forewarned that symptoms can be much worse when you add it back in than they were before you went gluten-free. Don't be surprised if it takes a few days for you to start to react. Maybe call your doctor to get your blood test redone before you start to...
  7. ravenwoodglass
    What wonderful news. Things have been so hard for you it is great to hear that you can open your eyes to the morning sun and smile. Thanks so much for the update as post like yours give the newbies hope.
  8. ravenwoodglass
    And you should be. Not a gluten issue though. Make sure you keep windows open or use it outside as you don't want to breathe in the vapor. If I remember correctly the vapors may also be flammable so that ventilation is vital. I think the non-toxic water soluable glues and pastes are the ones more likely to be wheat derived.
  9. ravenwoodglass
    I don't know if it would work for you but I take plain asprin. If my muscles and joints are having a bad day a hot shower and some Tiger Balm also gives some relief.
  10. ravenwoodglass
    Since you had been gluten free for six months before the tests and only did a two week challenge I am not at all surprised you were negative. By that point you would need a much longer challenge unfortunately. There are more celiac associated genes than just the two you were tested for. I don't have them either but am firmly diagnosed. It would be interesting...
  11. ravenwoodglass
    I don't think so. Hopefully your question will get a couple more responses. Some are lurkers, some may not be members yet, some will not have time to answer, some will think the question has already been answered and not have anything to add etc. There are many reasons why folks get lots of reads but not all respond. It happens all the time. You might want...
  12. ravenwoodglass
    Have you brought this up with your doctor? Do you have a home blood pressure tool? If you do you may want to take your BP when this is happening and write it down to take with you to the doctor. Having your heart pound so hard it wakes you up could be a sign of a serious problem so do run it by your doctor just to be on the safe side.
  13. ravenwoodglass
    Welcome to the board. I am going to suggest that you wait a bit on the specialty gluten free foods. Instead go with whole foods. Meat, chicken, veggies, rice, fruit etc. Shop the outside aisles of the store. Things are often up and down when we first start the diet so what you are going through isn't unusual. Also make sure that you are doing what you need...
  14. ravenwoodglass
    I eat enough saurkraut and yogurt and don't need probiotics. I use NOW brand, Solgar for a stress level B and sometimes Country Life. My multi is a store brand, Wegmans.
  15. ravenwoodglass
    For me those problems developed in childhood at around age 7 or so. It got worse as years went on and became very severe by the time I was in my 30's. Most of the problems resolved within a couple years gluten free but some nerve damage remains (no pain though) and is likely permanent as I have been gluten-free for almost 10 years now.
  16. ravenwoodglass
    Not much is safe at Taco Bell. Don't know if this list is valid where you are but here is a link Open Original Shared Link
  17. ravenwoodglass
    Go with fresh whole homecooked foods. Meat and potatoes, fish, chicken, fruit and veggies etc. I am curious what gluten free foods he having problems with? For some of us stuff like soy or bean flour can be a problem leading us to think we are reacting to gluten when we really aren't. Tell us what his favorite foods are and maybe someone can be a bit more...
  18. ravenwoodglass
    False negatives are really common with biopsies and with blood work. Did you have positive blood work? If you did you are one of us. Good for your doctor to have you keep eating gluten free despite the negative biopsy. Glad to hear the diet is helping as that is the best test. You weren't gluten free before the biopsy were you? That will ensure a negative...
  19. ravenwoodglass
    With the type of swelling you are describing you need to see your doctor. Do eliminate the dairy and soy and if the throat and tongue swelling happen again before you get to your doctor get to the ER right away. Do not drive yourself call an ambulance. Those are symptoms of an allergic reaction and can easily turn life threatening. Your doctor may want to...
  20. ravenwoodglass
    I took a look at it but I can get gluten free vitamins at the same levels from my local grocery store for much, much less expense.
  21. ravenwoodglass
    Was your total IgA tested? You may be low also. In my family I was severely ill for many many years and always showed a false negative. Both my children were low positive on testing though they had much milder GI symptoms. Celiac testing really leaves a lot to be desired.
  22. ravenwoodglass
    Whine as much as you need to as we will always listen.
  23. ravenwoodglass
    Can you come back to the States and get your health issues sorted out and then rejoin him where he has been transferred?
  24. ravenwoodglass
    Do make sure you don't go gluten free until after all testing is done. Then do the diet strictly for at least a couple months no matter what the results. It would be a good idea for Mom and Grandmom to get tested also if they will.
  25. ravenwoodglass
    I do wish doctors would tell people not to stop with gluten until their endos and blood tests for celiac were all done. If you really need the endo you need to immediately get back on gluten and perhaps consider resceduling the endo for July or August. Does that thought curdle your blood? If so listen to your body. Your doctor can still check for other problems...
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