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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Not only have I heard of it I had them for years. At one time I was on almost toxic levels of an antiseizure med with horrible side effects. It is too bad that more isn't aknowledged in this country about the effects of gluten on the brain. I'm glad to hear you DD is doing well. It must be an incredible relief for all of you to have her responding so well...
  2. ravenwoodglass
    She does sound incredibly rude, maybe she was having a bad day. Not everyone knows what gluten is. When I call places I ask if there is any wheat, rye, barley or oats in the product. It makes it easier for them to understand. I don't know if any Starbucks stuff is safe for us, perhaps do a board search using the word starbucks and see what comes up. I know...
  3. ravenwoodglass
    The article is likely saying that the effects of gluten on the brain, which can cause schizophrenia (and also depressive and anxiety) are similiar in action to the effects of LSD in the brain. It's about time the GI world recognizes the mental effects of gluten on our brains. So many of us suffer from mental illness in one form or another that is caused...
  4. ravenwoodglass
    When I did my challenge my doctor told me it might take from 3 days to a week for the upset stomach to hit but that I might get other issues first, like a headache etc. He was right. My ataxia gets worse right away, I get real depressed and sometimes a headache for the first 3 days then the D hits then I get the bone and muscle pain. The doctor said sometimes...
  5. ravenwoodglass
    I think what it boils down to is that doctors figure we will cheat on our diet like many do on other medically needed dietary regimes. I don't think many of them 'get' the severe repercussions that many have from eating gluten. It just isn't a diet that we can simply drop for a day because a yummy chocolate cake is near like someone who is restricting calories...
  6. ravenwoodglass
    Your body is reacting more drastically because it really, really wants you to be gluten free. Celiac is an autoimmune disease in which your body forms antibodies. When you get even just a little bit it causes those antibodies to 'flare' and the body reacts, often even more violently than before we went gluten free. The reaction is your bodies way of saying...
  7. ravenwoodglass
    I would go gluten free. You could request a celiac panel before you do but your doctor seems like a good one and I would consider just going with the diet.
  8. ravenwoodglass
    No unfortunately it is not out of line. Do submit it to your insurance company if it hasn't been submitted already. The first time I got a bill for one of the 13 tube draws they did on me and saw a bill of well over $1000 I freaked too. But the insurance covered it with no problems, and the four or five others that were submitted later as they redid the tests...
  9. ravenwoodglass
    Going gluten free may not be easy at first but I think that is what you need to do. Sometimes our bodies give us answers that the testing cannot. I do hope you give it a good try for a couple of months. If you go with whole unprocessed foods it is easier. If it helps it will make all the other issues you are going through much easier.
  10. ravenwoodglass
    This list is wonderful but we do need to keep in mind that there is a high risk of CC with almost all of these products. That they don't disclose.
  11. ravenwoodglass
    Can you talk to his doctor and get them to change to a different TPN? If his doctor isn't willing to switch to a different one you may want to consider getting a second opinion from a different doctor or perhaps a transfer him to a different hospital. I would also keep a written record of his progress or lack of it and also take notes or record all conversations...
  12. ravenwoodglass
    I just checked out the Joelle site that is advertised here. They have a lot of stuff that is soy and gluten free. They are pretty reasonable in price and I think I am going to try out the foundation and the lip gloss. There was no soy in any of the products that I looked at. Might be someplace you want to check out also.
  13. ravenwoodglass
    You do have one of the main celiac associated genes. As to the negative blood tests there are false negatives. You do sound like you could be one of us. After you are done with all the testing you choose to do then I would give the diet a good strict try.
  14. ravenwoodglass
    I am one of the estimated 20% (NIH) of celiacs who test negative on blood tests. It delayed my diagnosis by many, many years. Has your doctor mentioned you having an endoscopy with biopsies? If he has and you are going to do that keep on gluten until that is done. Otherwise I would give the diet a good strict try and see if it helps. You could also do Enterolab...
  15. ravenwoodglass
    Your body may just not have healed enough yet. Another thing to consider is what was it mixed with? The gin itself should be safe.
  16. ravenwoodglass
    I did after one set of scopes when I had a reaction to the prep. I found pepto bismal liquid to be really helpful it seemed to coat the inside and relieve the pain quickly. The gas and bloating is pretty normal after a scope. They blow air into the intestine when doing the lower scope and it can take some time for it to 'pass'. If things get severe or you...
  17. ravenwoodglass
    It is amazing how much this disease takes away. Perhaps by this time next year you will be dancing, surfing and horseback riding again. I feel the worst for my kids, now adults, their childhoods were severely impacted because there was so much that we just couldn't do. It broke my heart when I had to give up riding myself, I would still take my DD to...
  18. ravenwoodglass
    I would be doubtful of the Aveda products. I think they make a couple products we can use but not many. There are home colors that are safe, I use Garneir products and have also used Herbatint, an organic color from Italy. If you can't find a salon with a color you can use some will let you bring in your own and apply it for you. That way you can get the...
  19. ravenwoodglass
    Thanks for posting this info. So many products that don't contain gluten contain soy and it is hard to find safe lip balms. I know chapstick is safe but I can't stand the 'waxy' feel to it. I will have to look for the badger ones.
  20. ravenwoodglass
    What you are describing sounds an awful lot like the DH that plagued me from childhood. A derm can biopsy the areas next to the sores to look for the antibodies. Do find one who is familiar with DH as if the biopsies are not done correctly and they are not looking for DH they won't find it. You should also get a blood screening for celiac although those...
  21. ravenwoodglass
    I'm glad to hear things are improving so much for you. I know I was shocked with how much 'went away' once I went gluten free. I was only expecting my stomach issues to get better and would have been happy with that. When my doctor told me many of the other things for which I had been told to 'just learn to live with the pain' disappeared. I too feel like...
  22. ravenwoodglass
    I was wondering about the safety of Miralax for us also. In addition do make sure that all meds, script and OTC are checked for gluten statis. There are no requirements that gluten be acknowledged in labels for drugs and supplements and in additon if a supplement contains wheat or barley grass they can call it gluten free but they really aren't.
  23. ravenwoodglass
    When you changed to a gluten-free diet did you greatly increase the amount of fruits and veggies and beans that you are eating? If they were increased suddenly your body may be having a hard time adjusting. Are you cooking your veggies and fruits? That may help to make them easier to digest. You could also be reacting to CC as once we get the big load of...
  24. ravenwoodglass
    If the IGA result is her total IGA then she may be IGA deficient which would cause a false negative on tests. It also is known that children have an even higher rate of false negatives than adults do. After all testing is finished do give the diet a good strict try. Please be aware also that celiac is not an allergy and it will not show up on allergy testing...
  25. ravenwoodglass
    I have used the regular Heinz ketchup for years with no issues. When I was first diagnosed I know the Organic form was not gluten free. It sounds like it still isn't.
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