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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    No it doesn't rule out celiac. False negatives are not uncommon. After you are done with all testing, including the biopsy if you are going to have one do try the diet.
  2. ravenwoodglass
    I am like you when I get glutened my life stops for a few days. For years I couldn't imagine being able to do anything because my reactions are so very severe. When I get glutened there is no way I can do anything as the pain, D and the neuro effects are just too much to even function. As time has gone by and I started doing a lot of the stuff that the others...
  3. ravenwoodglass
    Thanks for posting that. I am one of the very sensitive folks and I appretiate the info.
  4. ravenwoodglass
    I lost about 20 lbs and went from a size 14 to a 4 my first month or so on the diet. Then the weight loss stopped and I have now been the same size for 8 years. In my case a lot of the weight was water weight and I even lost a full shoe size. If you had a lot of bloating some of that weight may be water weight. I would make sure that you are getting enough...
  5. ravenwoodglass
    Yea I love Wegmans also. I believe they have a celiac in the family that founded the store. I have never had a CC issue with them as they are very careful about what they label as gluten-free. They even recognize that some of us react to distilled gluten so they take that into account with stuff like BBQ sauce and pickles. I am looking to relocate out of...
  6. ravenwoodglass
    I believe it is soy derived but you could call them and ask. I do check the source on tocopherol but I am very sensitive and my symptoms are so severe that I play it safe always.
  7. ravenwoodglass
    It sounds like things will go much better with the new doctor. Do ask him to do the blood work so the GI can have it when you get there. It sounds like your DH is really supportive, that helps a great deal. If after you see the GI and it's time for your trial of the gluten-free diet if you can make the house gluten-free at least until your healed that...
  8. ravenwoodglass
    That would be a great reply. I hope your mouth heals quickly. Dental stuff is no fun. Relax as much as you can and hopefully you have lots of yummy liquid and mooshy stuff on hand.
  9. ravenwoodglass
    ((((((((((((hugs)))))))))))))))))) I'm sorry you have to go through that. Just went through a divorce myself, it isn't easy. Hope you get over the glutening soon.
  10. ravenwoodglass
    Are you gluten free? If your not do you have other symptoms of celiac, tummy issues, migraines, fatigue, anemia, joint and muscle pain, GERD, mood issues etc for example? If you do has your doctor done a celiac panel? If your not gluten free and your doctor hasn't tested you for celiac ask for the panel before you go gluten free. After you have had all...
  11. ravenwoodglass
    That is exactly what I would recommend. I would say to the nurse "I strongly suspect I have celiac and I am suffering greatly. Please can we do the blood test so we have the results at my visit. Also if you have any cancelations can you put me on the list so I can get in sooner."
  12. ravenwoodglass
    I'm sorry this happened to you. (((((((((((((((((((hugs)))))))))))))))))
  13. ravenwoodglass
    Try and relax. Everything you are experiencing and more can be due to celiacs impact on the brain and nervous system. It can take much more time to heal the nerves than to heal the gut but they can heal. Do have the doctors run complete vitamin and mineral panels on you if they haven't already. Sublinual B12 may help the nerves heal a bit faster. I can't...
  14. ravenwoodglass
    I hadn't changed anything that I know of. However I just tried it again and it is working. I'm not getting the 'you don't have permission message any longer. Thanks.
  15. ravenwoodglass
    No the normal IGA does not rule out celiac. Did they do a total IGA on you? If your total IGA is low that will make the test come out a false negative. While the high IGG can in some cases be due to other things it is usually a good indicator of celiac. While the allergy testing is not the same as intolerance testing for some of us our immune systems go into...
  16. ravenwoodglass
    You can get plenty of carbs with the gluten-free diet. Thai kitchen makes some really good rice noodles if your a pasta lover. There are good gluten free bagels and Ener-g and Glutino make good crackers. Snyders has come out with a gluten-free pretzel and Glutino and Ener-g both make good ones also. Part of your being down may be gluten withdrawl as that...
  17. ravenwoodglass
    It actually is a good thing to be taking every day for a while until you heal.
  18. ravenwoodglass
    Sublingual B12 is a small tablet that you put under your tongue. It dissolves and the B12 enters directly into the bloodstream bypassing the gut which can't absorb it when damaged by celiac. You can find it in the vitamin section of most drug and grocery stores or in a health food store.
  19. ravenwoodglass
    I was always sickest in the mornings, every morning but toward the end it was all day and night every day. I would also wake up in the middle of the night with stomach pain and D. After I was finally diagnosed my GI actually listened when I told him the pain and D would wake me up at night. It was then that he told me that being woken up by an upset stomach...
  20. ravenwoodglass
    It was rather rude of him. That 'wonderful' side effect is why I wear so much loose clothing. I love that tight leggings and loose tops are so in style now so I can still show off my legs but hide the belly. Hopefully by the next dance you will be unbloated. I hope you feel better soon and don't let that guy's unthinking comment get you down.
  21. ravenwoodglass
    You could try some sublingual B12, that may help. Also if you are formally diagnosed talk to the professor and your disability office at school. Explain what is going on when you get glutened. I got glutened right before my Math final this summer and the instructor offered to let me take the exam the next week.
  22. ravenwoodglass
    If you are going for a diagnosis you really do need to stay on gluten until after you see the GI doctor. However you don't need a doctors permission to be gluten free and if you can't tolerate staying on the challenge and your symptoms are gone by the time you get to that appointment you do have your answer.
  23. ravenwoodglass
    It is really up to you whether you want or need a formal diagnosis. It sounds like your rhuemy is a good one who has realized that gluten is a toxin for you. If you feel you need a celiac diagnosis then do go ahead and do a challenge but be forwarned your body may really not like the challenge and you may still have a false negative on the biopsy.
  24. ravenwoodglass
    You do sound like your in the right place. Keep on gluten until your testing is done and you can call the GI doctor and ask to be put on the cancellation list so if someone else cancels their appointment at the last minute they can slide you in. With the symptoms your kids have it might be a good idea to ask their ped to do a blood test on them also. Sometimes...
  25. ravenwoodglass
    When you call the office if you ask to talk to a nurse sometimes that can be helpful if you think the receptionist isn't going to listen to you. Also if you are not happy with your doctor you do have the right to switch to another. You could also try writing down what is going on and having the doctor read it so you don't end up with 'he only listened to...
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