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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Your blood work was strongly positive, I am sorry your doctors are not savvy enough to diagnose you without torturing you more. Do make sure that the doctors do the biopsy correctly, bring this with you: Open Original Shared Link With your blood work there are doctors that would have diagnosed you based on that as a positive as strong as your is pretty...
  2. ravenwoodglass
    I was able to find a ping pong set that used our dining room table, it was a net, balls and paddles and the net just hooked on to the sides. A larger toy store may carry them or check with Ebay. If you have a large square table that might work. It would be much cheaper than having to buy the whole table. I got ours off Ebay for less than $5.
  3. ravenwoodglass
    Yes it was Enterolab that I used. I don't know if there are other places that test for all the genes now known but there may be. Yea I have irreversible damage also but no where near as bad as it sounds like your Moms is. My hands still look 'knobby' but I can move and use them. Before diagnosis I couldn't even hold a cup by the handle or write with a pen...
  4. ravenwoodglass
    I had to smile at that. I was a twin and I was the 'P Bag'. Perhaps his twin might run or bike with him. A basketball hoop might be a good thing unless they are of the anti-sport mind. My son would have never used one. One thing to that helped my DS, who also had some anger issues, was martial arts. It taught him a lot about control as well as self defense...
  5. ravenwoodglass
    If you are going to do gene testing make sure you go to someplace that tests for all the genes, there are 9 currently known to be celiac related. I had my genes tested a few years after diagnosis and found I have 2 copies of DQ9 which is considered an RA gene here in the US but is a recognized celiac related gene in some other countries. I am glad to hear...
  6. ravenwoodglass
    There are a lot of us who dealt with the neuro effects and/or the awful withdrawl symptoms and understand both how you feel and your son. Hopefully the worst of things will be over soon as the withdrawl is tough. You may wake up to a much brighter, happier child soon. For some it is almost like an 'overnight' thing with a sudden change over to more normal...
  7. ravenwoodglass
    Yes I did and they found 5 lesions. I was thought to have MS because of that but when they did the spinal tap for final diagnosis no debris from the lesions was found so the neuro just shrugged his shoulders and said 'well lots of folks have those they don't mean anything'. The lesions are UBO's or unidentified bright objects. The look like blobs of white...
  8. ravenwoodglass
    Have you tried using something like this: Open Original Shared Link I couldn't find the one I have used, it was smaller but quite effective. You could carry it or something similiar with you. The one I had used a noise that I couldn't hear to repel them.
  9. ravenwoodglass
    Since your mother is celiac chances are that is your issue also. I would talk to your doctor about the possibility of reendoing after another period of being gluten free and see what he says. You have nothing to lose there and if the only thing that you do is go gluten free and the findings that you just had on your endo are gone when you are rescoped your...
  10. ravenwoodglass
    Yes ataxia does affect balance. I got so bad by diagnosis that I had progressed from walking next to walls and using a cane to the point where we were preparing my house for me to be in a wheelchair in another 6 months or so. By six months gluten free I was able to get rid of my canes and actually ran up my stairs. Within 2 years gluten-free I had regained...
  11. ravenwoodglass
    Your A1C was in normal levels. This is a good indication the your not diabetic. Some of us will have elevated BS levels whenever we are ill or glutened, that is normal. As to the negative blood work for celiac well.... read my signature and you will see what showing up negative, like 20% do, did to my body because doctors relied on the test as absolute...
  12. ravenwoodglass
    IMHO you have been diagnosed. Did the gluten challenge make you ill? If it didn't then you may want to keep 'poisoning' yourself for another 3 to 6 months and go back and get the endo done again. I am betting you have been feeling pretty sick though. If you have I would consider myself diagnosed rather than risking developing further problems like brain impact...
  13. ravenwoodglass
    Celiac is an autoimmune disease. It can attack far more than just the gut. My signature and those of some other folks on the board can illustrate that. Some of us can have serious impact to organs other than or before the gut. Some are even what the doctors call silent celiacs who never get GI issues at all. Her other allergies may resolve once she...
  14. ravenwoodglass
    I would prepare yourself and your household for being gluten free as soon as the endo, if you choose to have one is done. It is highly likely that with positive blood work gluten free living is in your future. False positives on testing are very rare, false negatives are common. When you are done with testing please do give the diet a good strict try.
  15. ravenwoodglass
    Was it the Delmonte tomato paste or was it their meat flavored sauce? Here is a list of their gluten free products. Delmonte tomato paste should be safe. The meat flavored sauce isn't. Open Original Shared Link Del Monte Gluten-Free Products All Del Monte® and S&W® Canned/Jarred Fruits All Del Monte® Fruit Cup® Snacks (Metal and Plastic), i...
  16. ravenwoodglass
    One other organ that has been proven to be compromised and is at times attacked first is the brain. I had both DH and gluten ataxia for years before gut problems got to the point where they were seen as 'abnormal'. With gluten ataxia the antibodies attack the brain directly leaving lesions that can be found on an MRI that appear to be similiar to MS lesions...
  17. ravenwoodglass
    Since celiac disease effects far more than just the gut and the antibody reaction begins the minute gluten enters the system through the mucous membranes in the mouth I seriously doubt that having worms compromising your intestines is going to help with the autoimmune reaction. Celiac is much, much more than just a gut disease. I would not risk brain, liver...
  18. ravenwoodglass
    If your concerned it may throw off the test I would think waiting until the reaction is over would ease your mind a bit. Since it is stressed so hard that we not go gluten-free before the test even for a short time I would think the antibodies most likely would leave the blood within a couple of weeks to a month. Don't know for sure and for certain though...
  19. ravenwoodglass
    Have you tried eating foods that are high in probiotics like yogurt with live cultures or saurkraut? I find those work just as well for me. You may also want to look into the possibility of other intolerances, soy and dairy being the most common if you are still having gut issues gluten free. Another possibility if you are still suffering digestive issues...
  20. ravenwoodglass
    At least one and likely both. All your first degree relatives need to be tested. But you can't force them to do it or to follow the diet.
  21. ravenwoodglass
    I wouldnt' risk it. I even stopped buying just cut up fruit at one small family run store I go to. I was constantly getting glutened and couldn't figure out how until the day I went into the back room and saw the employee's eating lunch off the cutting board they used for fruits and veggies. Mystery solved.
  22. ravenwoodglass
    If your husband is willing to make the house gluten free I would do so. Gluten free stuff has improved greatly and it is not a horrible thing for the family to go gluten free with you. For one thing chances are strong that you have more than just you in the family that needs to be gluten free. I would however insist on blood testing for other family members...
  23. ravenwoodglass
    And/or the diffence is in where in the body the antibodies attack first. I consider them the same thing.
  24. ravenwoodglass
    Thanks so much for providing the correct link. I refuse to sign up with the company and the other link only lead to the sign up page.
  25. ravenwoodglass
    I would get him into any counselor you can find. If he is fearful of eating that is normal but it may take a lot of understanding to get him past that. Please don't be too hard on him. Patience is needed as he is going through a lot. His behavior may not be acceptable to you but you have to understand that he is going through a greiving process right now...
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