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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Mark, Can you post the tests and results as they are written on the paper along with the labs ranges? Some doctors don't do a full panel or run a serum IGA to make sure the person is not IGA defiecent. I agree that you should drop dairy for a bit to see if it helps. You mention having had hard stools for most of your life and that what you are seeing...
  2. ravenwoodglass
    The reason that symptoms take a bit to resolve is because the antiboies can take time to go down.
  3. ravenwoodglass
    In the US only two of the celiac associated genes are looked for and there is research showing that they are not the only ones. The gene I carry two copies of are an example of that. While not common DQ9 has also been shown to be associated but doctors do not usually look for it. While helpful , please do not rely solely on gene testing to rule celiac in...
  4. ravenwoodglass
    Gluten reactions can be delayed so it isn't always the last thing you ate or came into contact with that got you. So look over what you have eaten for the last couple days. It is not a good idea for any of us to work with gluten flours. Flour can become airborne and be inhaled and get into the system that way. For the pumpkin seeds call the maker...
  5. ravenwoodglass
    Positive blood trumps negative biopsy. There is no other cause of elevated Celiac panel results. Can you get a copy of the biopsy reports? Some doctors will not call a biopsy positive until the villi are completely destroyed and discount any changes that come before that. Some will even tell a person to go back on glutenand come back in a year or so to retest...
  6. ravenwoodglass
    I'll keep my fingers crossed for you that the reaction isn't too strong. Do keep your doctor in the loop with the challenge if symptoms get too severe. A couple things that may allow you to still work outside your home that helped me are taking an anti-inflammatory like Aleve, Advil, Asprin etc (ask your doc which might be okay for you) and Immodium. I...
  7. ravenwoodglass
    A good excuse to get your favorite treat on the way home. Glad you resisted the temptation.
  8. ravenwoodglass
    Try dropping anything with even gluten-free Oats. Some us us don't tolerate them and have a gluten reaction when we consume even oats that are certified gluten-free. Also look into the possibility that reactions could be related to arts and crafts projects at school. At that age my kids were doing stuff like paper mache projects in school.
  9. ravenwoodglass
    Welcome to the board. With numbers that high and positive in all tests there really is no doubt you have celiac. Do read the Newbie thread at the top of the coping section as it will have lots of good info for you. I hope you heal quickly but do know that with nervous system impact (your MS type symptoms) healing can take some time..
  10. ravenwoodglass
    There are different antibodies. If your doctor told you that your antibodies were a high positive with the celiac panel you have celiac.
  11. ravenwoodglass
    Sorry your having such a tough time. Sure can sympathize. Options in my town are very limited. One can only eat so many salads while others are eating their favorite (now off limits) foods. Have you done a search for restaurants that have a gluten free menu that might be close to you? I was surprised to find quite a few within a 1/2 hour drive by putting...
  12. ravenwoodglass
    No it's not at this time. I don't thinkthe US uses the buccal swab either. I agree that it is a much more humane way to test for folks that are already gluten free as there is no need for a challenge.
  13. ravenwoodglass
    Welcome. Has your doctor tested you for celiac? Can you tell ua a bit more about what the rash is like?
  14. ravenwoodglass
    I would wonder why when you got the results of the biopsy from the GI doctor why didn't he just give you a lab slip for the tests. Since you are already gluten free maybe consider going back to the GI doctor and asking him that and also if he could do a repeat endo in 6 to 9 months to see if the damage has healed with the gluten-free diet. If your symptoms...
  15. ravenwoodglass
    Welcome to the board. A shared kitchen isn't always easy but can be done. First off anything that can be double dipped like jellies, butter, peanot butter, mayo etc can not be used by you if others have used them. Get new ones for just you and put stickers or colored tape on them so others know not to use them. You will need your own toaster also....
  16. ravenwoodglass
    Welcome to the board. It sounds like you may have gotten glutened. You may want to look at what you have eaten over the last 3 or 4 days since it can take a couple days antibodies to build up and cause symptoms for some of us. Have you read the Newbie thread at the top of the Coping secition? If you haven't you should do so as there is much we need to...
  17. ravenwoodglass
    This is the answer to part of your issues. Until you are healed avoid eating stuff off 'rollers' (this needs to be avoided forever) and from restaurants and others homes. Stay prepared with for sure gluten-free stuff you bring from home. You will heal much faster. You likely are glutening yourself often off things you may think are safe. Do read the...
  18. ravenwoodglass
    While the candy is gluten free the facility that makes them also makes items that are not on the same equipment. The equipment is cleaned between different items but there may still be traces left on the lines. Personally I would pass on these.
  19. ravenwoodglass
    The first link gives some sound advice diet wise if you have an active bout of infection. However it is best to look for advice on sites like PubMed, Medscape etc rather than from sites that are trying to sell you something. An active case of diverticulitis often requires hospitalization and IV antibiotics and is extremely painful. If this is not the case...
  20. ravenwoodglass
    CMV and celiac reactions share many of the same symptoms. When under stress we don't sleep or eat as well as we do on days that we are not. This might allow the CMV virus to rear it's ugly head again for a bit until you recover. In other words I don't think the symptoms you are experiencing after stress are gluten symptoms (unless of course under the stress...
  21. ravenwoodglass
    I get this effect and like you it lasts only 24 hours. I get through it by keep telling myself that it will be better tomorrow. I try to be easy on myself and not spend a whole lot of time around people. A walk by myself or doing something 'mindless' like watching comedies on TV helps pass the miserable day. This effect also makes me be really careful...
  22. ravenwoodglass
    It takes a bit of time for antibodies to leave the skin. Very tiny amounts of gluten will reactivate them and iodine will also keep the lesions active. Some need to avoid all iodine in foods. Personally I just needed to drop iodized salt but others will also avoid sea foods, sea weed etc. Making sure that any shampoos and lotions etc are gluten-free is...
  23. ravenwoodglass
    If you want to be tested for celiac you do need to be eating gluten. You don't have to have it at every meal. You can simply have the equivelent of a couple slices of bread a day. It would be a good idea to start back on gluten ASAP as if you have been strictly gluten free iit can take time for the antibodies to build up enough to show on blood work. You...
  24. ravenwoodglass
    Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies...
  25. ravenwoodglass
    The best thing you can do is get to your regular doctor and have a celiac panel run. You might also ask to see an allergist. Be sure to keep eating gluten until all celiac related testing is done.
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