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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Your celiac panel results were very high. Even if the biopsy results are negative you still need to be on the diet. As Karen stated many times doctors can't tell just by looking if someone has celiac they need to wait for the biopsies to be read. There is a chance of false negatives with the biopsy. You don't need to be eating gluten for the genetic testing...
  2. ravenwoodglass
    I agree you should get another celiac panel done. It doesn't have to be done by a GI doctor any doctor can order one. If you can't get anyone to test any further listen to your body. I suppose you could try going gluten free again and then when you are feeling better maybe have soups with barley daily for a week or so to see if there is a reaction.That might...
  3. ravenwoodglass
    Keep in mind there can be false negatives with the biopsy. You can start the diet as soon as you get home from the procedure. No matter what the results of the biopsy are with the positive blood work you had you have celiac.
  4. ravenwoodglass
    Doctors can be real jerks. I even had one tell me I just wanted to be sick and it was all in my head. Glad to hear you are going to try and get someone to listen and actually test you. After all celiac testing is done then you can give the diet a good strict try no matter what the results but it is important that they test you first.
  5. ravenwoodglass
    In addition to the excellent info you got from others it should be added that reactions can be delayed. That little bit of brain fog and tummy ache may turn into explosive D today or tomorrow. Hopefully it won't but no way to tell. I know it is hard when you are young to have anything that makes you different from your peers but you must stay strict with...
  6. ravenwoodglass
    Call the GI you have an appointment with and ask the doctor to call in a script for the blood test. Sometimes they call it into the lab and other times they will have you pick up a hard copy. I could be wrong but the other doctors sound like they were basically blowing you off. Not a good thing so if you can find other doctors it might be a good idea. It...
  7. ravenwoodglass
    I had indoor/outdoor cats for most of my life. Then I moved into the home I am in now and have a neighbor that detests cats. After one was almost killed by him with a bat they became strictly indoor. It did take both of the kitties a while to get used to not going outside but they did accept it after a time. I made sure they had plenty of toys and that did...
  8. ravenwoodglass
    I am so sorry you are going through all this. Trying to get a diagnosis can be well trying. First if you had been gluten free for 40 days your celiac panel could well have been a false negative. In addition it is not uncommon for folks with DH to have negative results. How was your biopsy done? If it was done on a lesion it will be negative for DH. They...
  9. ravenwoodglass
    He could be casien intolerant, the protein in milk, instead of or in addition to lactose intolerant. If you think dairy is a problem you could eliminate cows milk products for a bit and see if it helps.
  10. ravenwoodglass
    So glad this outbreak is over for you. Hope you never have to deal with it again.
  11. ravenwoodglass
    I would not store any gluten free items next to wheat flour. It would be a really good idea to rid the house of wheat flour altogether. If family has to have gluten baked goods get them premade as flour can float in the air for up to 2 days and contaminate you. As far as the table goes just wash it very well and make it a practice never to put your food...
  12. ravenwoodglass
    How long have you had D so severe that immodium isn't helping? If it has gone on for more than a couple days a trip to the doctor may be in order. You want to make sure that you haven't picked up a case of food poisoning or another nasty bug. I say this because the only time I had severe D that immodium didn't help was when I got salmonella and had to have...
  13. ravenwoodglass
    Don't freak out bring something with you. If they are just going to pick something up on the fly to me that means either fast food, subs, pizza etc and may not be planning on a sit down at a restaurant anyway. Even if they are there is no reason not to bring your own sandwich or salad or whatever you might enjoy. If anyone says anything just explain you have...
  14. ravenwoodglass
    If you do have celiac then yes CC and occasionally eating something that isn't gluten free can keep those antibodies active. If you have ataxia when they do an MRI on your brain chances are good that UBOs wll be found. Those are white spots that will show up on the MRI. They are very similiar to the lesions that are found with MS but often in locations that...
  15. ravenwoodglass
    If that was true then the thing to do would have been to contact Scott. At the time. I don't see what your purpose is posting that a year later.
  16. ravenwoodglass
    Welcome to the board. Your description of your symptoms do sound like you could be one of us. IBS doesn't wake people up. This info came direct from my GI AFTER I suffered for years and had finally been diagnosed. I had told him that was happening but he just didn't listen. He apologized profusely and I found another doctor. Do keep eating gluten and...
  17. ravenwoodglass
    I went undiagnosed for over 40 years. The last 15 were a living hell with me up for 2 to 3 hours every night with extremely painful D that would give me relief for only a few hours. Doctor after doctor told me there was nothing wrong with me even when I got to the point where I was covered in DH sores, had issues with memory, joint and muscle pain that made...
  18. ravenwoodglass
    Yes it is common. It can take time for the antibodies to build up and cause a reaction. 3 days is what it takes for me to get a gut reaction although my neuro symptoms hit within a day. Not everyone gets hit within hours of consuming gluten or another food they may be intolerant to. If you do want a doctors diagnosis you will have to do a gluten challenge...
  19. ravenwoodglass
    Do keep in mind also that your medical records are your private information. Don't cancel your appointment it will do no harm to go and after the testing is done go back to being gluten free. You know it is not all in your head and the turn around in your health and well being should be enough to convince your family. You can always tell them that the doctor...
  20. ravenwoodglass
    Great to hear that things are looking up. I hope you can heal quickly and are feeling better soon. I hope things only continue to improve.
  21. ravenwoodglass
    I don't know the gluten statis of Prozac but do be aware that some folks have negative effects from it. Not saying you will but if you notice any problems call your doctor right away as it can make some suicidal. It is a good idea to look up adverse and side effects of any drug IMHO so that you can be aware if any are happening. Do read the link provided...
  22. ravenwoodglass
    That is long enough to impact your tests. If your celiac tests come back negative do a gluten challenge for 6 to 8 weeks and then retest.
  23. ravenwoodglass
    Please be aware that if you are gluten free or gluten light that can give you a false negative on celiac testing.
  24. ravenwoodglass
    Have you had a full celiac panel? If not request one from your GP or Interist. There are false negatives but it would still be a good idea. If you should decide to get a second opinion from a different derm do go to the NIH website and print out their instructions for testing for DH. It would be a good idea to also send a copy to the clueless derm you just...
  25. ravenwoodglass
    Good plan. Have something with phyllo for me. Just don't tell me how good it was.
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