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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    If you're diabetic are you consuming candy with sugar substitutes or alcohols? Some of us have a hard time with those.
  2. ravenwoodglass
    The good news is you have figured out what is going on with your body. The bad news is you won't likely be able to get diagnosed with celiac unless you go back on gluten for a while. And it sounds like that will make you very ill. IMHO your best route is to simply stay gluten free. There are no other illnesses that I know of that would cause the symptoms...
  3. ravenwoodglass
    I think another variable is which body systems are the most severely or earliest impacted. I showed false negative blood work repeatedly even after my GI system was severely compromised. I do not know if a total IGA was ever done as I was diagnosed many years ago and was seeing many different doctors for different system impacts. Since I had false negative...
  4. ravenwoodglass
    Don't know if you can get it in Canada but Velveeta (not sure of the spelling since I use the Wegmans form of it) makes a good cheese for mac and cheese. I just use gluten-free pasta and then cut up the cheese food into small chunks and add a little milk and stir on low heat until the chunks are melted. If he like hot cereal Cream of Buckwheat is a good...
  5. ravenwoodglass
    Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the...
  6. ravenwoodglass
    Try not to worry about the test. Most just go to sleep and wake up and don't remember a thing. There are even folks on the board who have had the procedure done with no sedation and were fine. Make sure if the test is to diagnose celiac that you continue to eat gluten until the test is done.
  7. ravenwoodglass
    Sorry I couldn't be more helpful with your original query. It has been awhile since I had mine done and don't remember whether it was allowed or not. Hopefully the dr's office gave you a clear answer. Try not to worry about the tests. The prep is not pleasant but the procedures are usually very easy. Most don't remember anything of them except going to...
  8. ravenwoodglass
    Wow a neurologist who is knowledgeable about celiac!!!! I found that sublingual B12 helped resolve the neuropathy. If you are not already taking it you may want to see if it will help.
  9. ravenwoodglass
    Call your GI doctors office and ask the nurse.
  10. ravenwoodglass
    I could have written your post a 15 years ago. I had a lot of other symptoms also but the neuro ones are right in line with what you are describing. I had test after test after test and all came back in normal ranges. That included tests for celiac as I also had severe GI symptoms along with really bad joint pain. The only test that came back positive was...
  11. ravenwoodglass
    I've had both tests almost every time they drew blood. For me both were always high. No reasons were ever given though.
  12. ravenwoodglass
    For me it is a 3 day delay for most of my symptoms. This is especially the case for the stomach issues. I do get some neuro issues within 24 hours so then I get to have a couple of days of knowing what is coming, no fun. When I was diagnosed my doctor told me to challenge suspect items for a week before trying anything else as it can take up to a week...
  13. ravenwoodglass
    You say you are eating whole foods. Are you able to cook them yourself or do you have to rely on the dining hall at college? You may still be getting some cross contamination if you are not cooking yourself. Since you are already gluten free it would be difficult to go with an endoscopy for diagnosis. Unless you were constantly being cross contaminated or...
  14. ravenwoodglass
    Soy can be a problem for some of us but not for all. If you don't get symptoms from consuming soy I wouldn't worry about that. If you are celiac or gluten intolerant. you need to avoid wheat in medications whether you have a true allergy or not. The reaction we get from wheat (gluten) is not an allergy it is an autoimmune reaction. The reason I say to drug...
  15. ravenwoodglass
    That GI doctor is very misinformed about celiac. Do go back to your GP and let him know what your experience was so he will make his next referral to someone else. You GP seems to be much more knowledgable about celiac than the GI is. Your GP can give you the needed paperwork for her needed accomodations at school. I hope your little one recovers quickly...
  16. ravenwoodglass
    It is scarey but do keep in mind that by the time you have been gluten free for 5 years your chances, from what I understand, go down to the same as the non-celiac population. If you are very concerned and you haven't had your over 50 colonoscopy scheduling one soon with your GI doctor could set your mind at ease.
  17. ravenwoodglass
    I also get suicidal when glutened and very depressed. For me it lasts only about 24 hours. I keep it together by knowing it will lift soon and it is part of the effect for me. Those feelings are the first indication that I am glutened and I know I am in for a rough couple of weeks after due to the symptoms that follow.
  18. ravenwoodglass
    I call the maker of any medication that I need to take. Any scripts I have gotten have the makers name somewhere on the bottle in little tiny letters. I put their name and the words contact info in a search engine. Usually that will bring up a phone number. I do not ask if the med is gluten free because technically some wheat starch is considered to be so...
  19. ravenwoodglass
    Did they do a total IGA? It isn't uncommon for us to be IGA deficient and that would throw off the IGA tests.
  20. ravenwoodglass
    Just because your symptoms are in full swing after a glutening doesn't mean you will have positive blood tests. Some don't have positive blood tests even if they have never gone gluten free. If you have been gluten free for any length of time hopefully you have continued to gluten yourself. If you haven't make sure you let your doctor know right away. The...
  21. ravenwoodglass
    Welcome to the board. It isn't unusual for us to have more severe reactions to gluten after we go gluten free. That is your bodies way of telling you that you are doing the right thing by being on the diet. When we are on the diet the antibodies that are attacking us calm down. When you eat gluten they flare and that causes the symptoms. I know it's hard...
  22. ravenwoodglass
    Don't forget to unplug things like TV's, computers (or disconnect power strip), fridges etc. I stocked up on wood for the woodstove but a freind said last night he has a gas stove and a gas heater and we can head over there if we lose power so I will spend this morning getting the dog's crate and other needed stuff like PJs, meds etc packed up to put in the...
  23. ravenwoodglass
    A freind alerted me to this yesterday. Here I thought my C was caused by the med I took after a wisdom tooth was pulled. Wegmans Gluten Free Chocolate Cake Mix, 15.3oz - UPC: 7789028333 Wegmans Food You Feel Good About Gluten Free Honey Cornbread Mix, 16oz - UPC: 7789030343 Wegmans Food You Feel Good About Gluten Free All Purpose Baking Mix...
  24. ravenwoodglass
    The next time you see her do let her know that because she is celiac her children should be screened also. Celiac is strongly genetic but it is not one of the diseases for which both parents have to have the gene. You may want to refer her here to the board so she can read and ask any questions she needs. It is a good thing the subject came up at the get...
  25. ravenwoodglass
    Thanks Ciamarie, I found it. Lisa, I don't see the asterisk. Maybe you are signed in anonomosly (sp) or maybe it is for moderators?
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