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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    The statement you made to your friend is right on. If your having an antibody reaction even the tiniest amount can start those antibodies into formation and attack. My neuropathies were mostly a tingling sensation like you get when something falls asleep. But I also had a great deal of brain impact that effected my ability to move, it hit my right side...
  2. ravenwoodglass
    There are a lot of us who can certainly relate to what you are going through. Have you had any celiac screening yet? You have to be eating gluten for those tests to have any chance of being accurate and even on a full gluten diet there is still a risk of a false negative. Unless someone has experienced it it's hard to understand just how overwhelming the...
  3. ravenwoodglass
    Please be sure to check this out also. The US is finally waking up to the fact that it is not just those two genes mentioned in the NIH article that are associated with the development of celiac disease. Open Original Shared Link
  4. ravenwoodglass
    I could have written your post 7 years ago. Many doctors don't realize that the celiac panel has a high rate of false negatives. I was tested over and over but because the tests were negative they never even told me what the test was for or suggested the diet. Have you done a trial of the diet? That may give you your answer as to whether or not you...
  5. ravenwoodglass
    For many years my D was in the am only but after I woke up. Once my system cleared I would take immodium and be safe for the rest of the day. Then things changed and the D would strike at any time of day and at the very end, for the last 5 years before I was diagnosed it would wake me up painfully every night and I would be up from about 2 am to 5 am until...
  6. ravenwoodglass
    I am one of that group. Gene testing can be part of the diagnostic process but in the US they usually only look for two of the celiac related genes. In other countries there are up to another 7 that are recognized as related to celiac and recently here in the US they have recently started to acknowledge that but it will be a while, I believe, before all...
  7. ravenwoodglass
    I don't think this is an odd question at all. For myself the answer is a definate yes. I have hips and a butt now for the first time in my life. Before I was diagnosed I had a huge bloated belly but sticks for arms and legs with no fat layer to them at all. I am still very thin by most standards but have gained weight on my lower body and lost the belly...
  8. ravenwoodglass
    If her antibodies are increasing she is reacting. I know the change is daunting at first but as mentioned by the other posters you may find that she gets a lot benefit from the diet. There are a lot of 'normal' meals that can be made gluten free easily and if you switch the families diet to a gluten free one rather than making seperate 'special' meals for...
  9. ravenwoodglass
    An antibody reaction can also occur when gluten contacts a mucous membrane. In some countries they use a gluten suppository inserted into the rectum or apply it to the membranes of the mouth and then biopsy the tissue a couple of hours later to diagnose celiac. A much less barbaric practice than making someone sick for weeks with a gluten challenge. The...
  10. ravenwoodglass
    I don't think that question really has an answer that can be applied to all. I do know that in my own case neurological issues took a varied amount of time to resolve. While I was able to walk unaided within 6 months I didn't regain detectable leg reflexes for 2 years. The depressive aspect of my neuro damage resolved much more quickly, like within a month...
  11. ravenwoodglass
    I am so glad you are feeling so much better. Your advice is good advice about fast food and the 'processed in a facility' warning. Some can handle these things after they heal but there are others of us who can't and there is no way to know which group you are in until you have healed completely and are able to challenge them.
  12. ravenwoodglass
    Your not a mental case you are a celiac and you are healing. I hope things continue to improve for you.
  13. ravenwoodglass
    My experience is the same as your sisters. I definately have a gluten reaction to distilled gluten grains in alcohol and vinegars. I do not have a histamine (allergic) reaction the reaction is the same as it is when I accidentally ingest gluten. Fortunately for most though this is not the case and most celiacs are able to tolerate distilled gluten grains...
  14. ravenwoodglass
    It is not easy to find dentists in the US that are knowledgeable about celiac and whether or not what they are using is safe. I did find one who checked everything she used and they did have to order a couple of products specially because what they generally used in the office wasn't safe. I have been glutened every time I went except for when I went to...
  15. ravenwoodglass
    All you can do is to avoid those allergens. How strong were the reactions and are you still strictly and completely gluten free? Before I was diagnosed I showed reactions to 98 of the 99 substances that I was tested for. My allergist explained that my immune system was in hyperdrive and reacting to virtually everything. I had to be superstrict with the...
  16. ravenwoodglass
    I have very bad anxiety issues, everyone was convinced I was also depressed so they started out giving be both antidepressants and antianxiety meds combined. I was a mess on that combination. Finally my psychiatrist listened to me and we dropped the antidepressants and he prescribed alprazolam, the gluten free version of Xanax and the difference is incredible...
  17. ravenwoodglass
    A colonoscopy can not detect anything in the small intestine. Perhaps the doctor misspoke and meant an endoscopy, the test that is for the small intestine. You should ask him to clarify. If celiac is suspected you need the endooscopy. Some doctors will do a colonscopy first then if nothing is found either deem you to have IBS or schedule you for another...
  18. ravenwoodglass
    I don't think he is correct about that. I would check with WIC and the IRS about that. WIC is not a welfare program it is to insure that lower income pregnant or nursing women and their children have adaquate nutrition. I am almost positive it would not disqualify you for the Earned Income Tax credit but do be sure to check.
  19. ravenwoodglass
    I would put him on the diet for a few months. The reason why I say this is because of the high rate of false negatives on the panels even for adults. A false positive panel is really rare but in children the rate of false negatives is even higher than for adults. Celiac disease can present in many more ways than just gut issues and for some those gut issues...
  20. ravenwoodglass
    Thanks for posting this. Maybe someday US neuros will get more knowledge about the corelationship of celiac and the calcifications. Mine unfortunately was clueless and jsut shrugged his shoulders and told us the 'unidentified bright objects' were meaningless. I would suggest that anyone who suspects celiac and suffers from a seizure disorder print out...
  21. ravenwoodglass
    Meds do not have the same labeling regs that foods do. That means we have to have the pharmacist check the gluten statis frequently when the med is generic. Make sure your pharmacist has noted in your record that you are celiac and that they take the time to check before they fill the script. If the pharm does find it is not safe they can then contact...
  22. ravenwoodglass
    This is good advice, one word of caution about having it in the garden though. The mint family spreads readily. It can be pretty invasive. I got around this issue by planting it in a large pot, just dig a big hole, make sure the pot has drainage holes in it so that the plant doesn't drown. This also makes it so you can bring the pot inside for the winter...
  23. ravenwoodglass
    Is he gluten free? The reason I ask is because asthma is often related to inflammation. In my case my asthma disappeared totally within a short time gluten free. I took Singulair for years and also had to use a daily inhalor. I have had no need for either since I was finally diagnosed.
  24. ravenwoodglass
    Me too, I think a lot of illnesses, both physical and mental have a strong relationship with gluten consumption.
  25. ravenwoodglass
    This is no surprise to me but it is nice to see some research being done on this Autism May Be Linked to Mom's Autoimmune Disease Open Original Shared Link
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