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ravenwoodglass

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Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Your doctor is not very knowledgeable about celiac. Refractory sprue is really quite rare. Wonder what drug company he has stock in.
  2. ravenwoodglass
    I would take her gluten free immediately. My twin brother was also the picture of health while the antibodies were destroying his liver. Not meaning to scare you but some of the destruction can go undetected for a long time before symptoms come to the forefront. You really don't want to decide that she really should be gluten free after something like autoimmune...
  3. ravenwoodglass
    I am soooo glad I was firmly diagnosed celiac before any gene testing was done. I would be dead by now if I had continued eating gluten. Gene testing is a relatively new science and we are learning more every day. There are many more genes associated with celiac than just the two they look for. Don't let those results convince you to go back on gluten if...
  4. ravenwoodglass
    I don't know if your reaction to the fumes was made worse because of your still not being fully healed. I do know that those fumes are really toxic though. Could your church perhaps contact the fire dept and see if they could loan you some heavy duty exhaust fans that could be run for a while to see if they could relieve it somewhat?
  5. ravenwoodglass
    Thanks so much guys. Your well wishes and congratulations mean more to me than you can imagine. We are such a wonderful and supportive group of people. I am so happy to be a part of this 'family'.
  6. ravenwoodglass
    I hope you don't get too sick. It sounds like the restaurant felt really awful about it. The waiter will likely have his own nightmares tonight. Hopefully the rest of your birthday was nice. Wishing you a great coming year and a mild reaction.
  7. ravenwoodglass
    If a label has just vinegar on the label it is apple cider vinegar. Heinz uses non gluten distilled vinegar in most of the products I have checked but you should try contacting them to be on the safe side.
  8. ravenwoodglass
    Thanks guys. Yea I am proud of myself and I did treat myself by going to the new Harry Potter movie. I went to the matinee and had the whole place to myself so I even got to put my feet up on the chairs in front of me. I am sooo glad I took that quote in my signature to heart and didn't give up. The hardest class was the sign language because my right side...
  9. ravenwoodglass
    The choice to biopsy is yours alone. Talk to your doctor and see if they will give you a 'diagnosis' if she responds well to the diet. With positive blood tests that can be a possibility. False negatives with children on blood work are common and if her blood tests are positive it is pretty certain that she is celiac.
  10. ravenwoodglass
    I went through my medicine cabinet a couple of months ago and had to toss a bunch of those type meds too. My immodium had expired over 3 years ago! To think I used to have to buy a new box almost every week for almost 10 years!!!! Boy is that a good feeling as those meds get tossed in the wastebasket.
  11. ravenwoodglass
    In 2002 I had given up all hope of ever being able to do anything but live in pain and continue slowing dieing. Even after diagnosis I still had little hope of ever being able to accomplish much as my brain and body were so very damaged. Everything was so hard from thinking to walking to even talking to my children. I felt trapped in my own body. I had...
  12. ravenwoodglass
    I would give her a trial of the diet after testing is done. You never know the FM may be a result of the celiac impact and it might resolve after she has been gluten free for a bit.
  13. ravenwoodglass
    I didn't either until my throat started swelling and I broke out in hives. Too bad cause it is a great product for those that are not allergic.
  14. ravenwoodglass
    Very well put. CC is a very real risk for us. Once the antibodies react, and they will react to even small amounts, they will impact your organs. Unfortunately we do need to be strict. By the way there are some really good premade pizza shells, I like Kinnickkinnick the best as they are 4 to a package for only about 9 bucks. I always keep them on hand for...
  15. ravenwoodglass
    Can you simply pick up some fresh fruit and veggies like carrot sticks and celery when you get where your going or take some with you? Those should be available anywhere you travel to.
  16. ravenwoodglass
    While I didn't use them as part of my celiac diagnosis I did find them helpful in confirming my soy intolerance. I did them for that and to see what genes I carried since my blood and biopsy diagnosed DD was told she could never be celiac because she didn't have DQ2 or DQ8 and I wanted to find out which genes I did have. I had the testing done 5 years after...
  17. ravenwoodglass
    Thank you. The healing process for the brain is so very slow hopefully my progress will give hope to others. I am not sure what I am going to do yet. In the 90's I had a full scholarship to a great local college and wanted to teach in special ed. I don't think many places would be open to a student teacher in their midfifties so my plans have changed a...
  18. ravenwoodglass
    I did have that happen with one endo. I didn't react well to the drug (it didn't work) they gave me and they had to give me a great deal of it. On the next endo I was given a different drug and didn't have the same effect. Do discuss this with your doctor especially if it left you with other effects.
  19. ravenwoodglass
    I would eat before I went but I would also ask her if I could bring a dish like salad or a side dish cassrole that you would be able to eat safely. Stress that you really enjoy their company and want to come and that she shouldn't feel she has to try and accomodate your diet.
  20. ravenwoodglass
    The lesions on her arm look much like the lesions I had as a child, but mine covered my entire legs and arms and at times my face. After you see the derm if you are done with testing do try her on the diet. Nothing topical they ever gave me helped either except for once a year when they would give me prednisone. They wouldn't give it to me more than once...
  21. ravenwoodglass
    I agree completely. And I am someone that is unable to eat these due to the soy. I am thankful that Betty Crocker is making something that is safe for most us and to bash them for adding other allergens is in my opinion counterproductive for us. Lot of other gluten-free companies use soy in their products, Glutino pretzels, many of the products that come...
  22. ravenwoodglass
    My neuro symptoms were severe. By the time I was diagnosed I was unable to walk unaided. I couldn't read anylonger because I couldn't remember one sentence by the time I read the second. I couldn't name a fork if you held one up and had a great deal of trouble with my speech. I had daily migraines, no reflexes and one leg was flatline on an electromylogram...
  23. ravenwoodglass
    If I remember correctly your blood test levels are pretty high. I would do what the GI doctor said and stop eating gluten. You may find when you go to the doctor that with your blood test results and your response to the diet that he doesn't feel he needs an endo to 'diagnose' you. Contact the doctor that referred you and ask that they send your records so...
  24. ravenwoodglass
    I don't know the answer as to whether they are gluten-free or not but you could do what I do when I am crafting with a suspect item. I get medical grade nonpowdered latex free gloves at the drugstore. Usually they are near the diabetic supplys at my store. That seems to work to keep me safe for the glue I use on my glass projects which I know for sure is...
  25. ravenwoodglass
    Welcome to the board. You are doing the right thing to give the diet a shot even with the negative blood work. False negatives are all too common and cost me a lot because I just didn't know to try the diet. If you are going to have an endoscopy done wait until the day that is done before you try the diet. Then after the procedure go strictly gluten free...
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