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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Me too. I also go with just plain sugar or honey. Stevia might be something to try in place of artificial sweetners.
  2. ravenwoodglass
    Mood swings are not unusual with celiac nor is the dizziness. It does sound like he may have been glutened but can't say where he may have gotten it. For some of us the reaction is delayed so it could have been something he ate a couple days ago that got him.
  3. ravenwoodglass
    I really feel for you. You are in a tough spot. However if you take him gluten free or gluten light now you are insuring a negative test result and then it sounds like getting him to try the diet will be very tough. When he trys the diet he needs to do it strictly to see results. If he is not convinced he needs it you can't be with him 24/7 and police everything...
  4. ravenwoodglass
    No one on the board is trying to diagnose your child with anything we are simply trying to give advice based on what you have posted. This "My baby had a celiac panel done which came up positive with a score of 83.7 with normal range of 0-23" does have some significance. Not all the tests need to be positive for a diagnosis to be given by a doctor knowledgeable...
  5. ravenwoodglass
    Great advice and exactly what I was going to say.
  6. ravenwoodglass
    What a blast from the past! I remember that stuff also but haven't seen it in years. Another one of my favs from way back is 'Gee your hair smells terrific'. Saw it in a catalog a around Christmas but with shipping it would have been really pricey and they of course didn't give ingredients. I never thought of looking in shampoo aisles at the dollar type stores...
  7. ravenwoodglass
  8. ravenwoodglass
    You have a valid concern. You have gotten great advice from the previous poster. You have a positive blood test, the choice to stay on gluten and then get the endo done is yours alone. Even if the endo is negative you still need to do a trial on the diet. With positive blood work and good response to the diet followed strictly and a decrease in your blood...
  9. ravenwoodglass
    I am so sorry you are going through this. I don't know why doctors feel we have to prove the diet is helping by making us as sick or sicker than we were when we started it. False negatives on testing are not uncommon even having never been gluten free and even close to death. (Raising both arms and waving strongly here ) My doctors refused to even consider...
  10. ravenwoodglass
    I am sorry she is without health insurance. That can make things tough. How old is your daughter? Since she is in college if she is 26 or under she may be able to go onto your health insurance. This is one change in the health care laws that I think is now if effect. Check with your insurance company to find out. Also there are low or no cost health insurance...
  11. ravenwoodglass
    Could you post a link to this list? Some of the items appear to be soy, corn (which does have gluten but is not an issue celiac wise), and coconut derived.
  12. ravenwoodglass
    Thanks Mushroom, I knew I had seen a way somewhere on the board.
  13. ravenwoodglass
    I also went through this. I had a genius level IQ on a test done as a teen. I was an avid reader as a child and they let me into the library's adult room at 9 where I would take out books on everything from art to vet medicine. By the time I was diagnosed I couldn't even read or add a row of numbers with over 2 numbers. I had to stop college 1 semester...
  14. ravenwoodglass
    False negatives on blood tests are unfortunately common. The biopsy as the previous poster stated needs to be from skin next to the lesions not the lesion itself. My DH was severe and I stopped getting new outbreaks within a couple weeks gluten free. However even a tiny bit of gluten would flare the rash for a couple of years as the antibodies take a long...
  15. ravenwoodglass
    You may want to post a topic 'cast iron pans' and ask how to degluten a cast iron pan. I seem to remember someone posting a way to do it a while back. If there isn't a way hopefully someone will know where to find a good non-seasoned or seasoned one. I have one that I got a Tractor Supply that was preseasoned that has held up well if you have one of those...
  16. ravenwoodglass
    Don't be afraid of the testing because of the chance of a negative. Even with negative testing once it is done you can start the diet and see if it helps. If you don't want the testing that choice is yours. It sounds like your neuro is a good one and if you need for some reason to have a formal diagnosis in your record, like to get your children screened...
  17. ravenwoodglass
    Is it the 'Fage' yogurt you are referring to?
  18. ravenwoodglass
    If buckwheat is available Cream of Buckwheat cereal is one option. Other than that you could go with eggs and bacon or another meat, fruit and some nuts, pnut or another nut butter on apple slices, or anything you would eat for another meal. You could also post the 'what to eat for breakfast' in the coping or products section for suggestions from others....
  19. ravenwoodglass
    It is not a bad idea to get a celiac panel done. You mention being on Librax, that med could be preventing you from having D, it was one of the many, many drugs that I was on. After you have had all the celiac related testing done that you want to have done do give the diet a strict trial. Do NOT suddenly stop the meds your on. While they may be controlling...
  20. ravenwoodglass
    Beefree11 thanks for posting those links. They are good ones from good sources and may be helpful to many. Please don't feel like you are defending yourself. It is not unusual for folks to ask for links to information and it helps others. Your a great Mom to be working so hard to help your daughter. I do hope she responds well to the diet. As you have...
  21. ravenwoodglass
    False negatives on biopsies are not uncommon. You have a positive blood test for a reason. Damage can be patchy and be missed if they don't biopsy the right place. Since you had a postive blood test you do need to get on the diet strictly.
  22. ravenwoodglass
    Has your neuro done an MRI? Brain lesions called UBOs or unidentified bright objects are often found with those that have neurological impact and are diagnostic of antibodies attacking the brain. Unfortunately my neuro didn't know that so thought I had MS. As the others have said ask for a celiac panel before you go gluten free and if you choose to do an...
  23. ravenwoodglass
    Thanks for posting this. It will be helpful to many of us. I like that it also lists effects of levels that are too high.
  24. ravenwoodglass
    I find Pocono Cream of Buckwheat cereal to be really soothing when glutened. Name brand Pepto Bismal helps with the stomach pain for me. Sorry your feeling so bad and hope you feel better soon.
  25. ravenwoodglass
    Yea they tried to push Fosamax on me too. I refused it as I had heard of so many problems with it and with my teeth in such bad shape from so many years of undiagnosed celiac it just wasn't worth the risk. I also do supplements and weight bearing excercise. I am overdue for another scan as in the last 2 undiagnosed years I went from osteopenia to full osteoporosis...
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