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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    "Well, the results came back inconclusive with some markers coming back as positive for celiac and others coming back as negative" Some doctors falsely think that all the celiac tests need to be a high positive for someone to have celiac. They don't. In fact we can have totally negative tests and still have celiac. It would be helpful if you post the...
  2. ravenwoodglass
    Durham is farther inland near Raligh (sp?)
  3. ravenwoodglass
    Welcome to the board. You do have positive test results. While that may seem like bad news right now it may actually be a good thing. You may see the fibro and CFS disappear once you have been on the diet a while. My arthritis is also in total remission but can't say for sure that will be the case for you. If you are going to persue an endoscopy then wait...
  4. ravenwoodglass
    Skylark has said this so well I don't have anything to add except I hope you heed her advice. Celiac is the only disease I know of where doctors want us as severely impacted as possible before they will diagnose.
  5. ravenwoodglass
    Glad to hear the chemo is done. With your strength and good attitude, well I think you can beat anything. ((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))
  6. ravenwoodglass
    I am relieved to hear that you are going to choose to go with a whole foods (gluten free) diet. Perhaps thinking of it as simply whole food and nonprocessed it will be easier for you to do. You are thus making the choice to treat your body as well as you can rather than 'treating a disease'. I have been following the discussion but what you are going through...
  7. ravenwoodglass
    Personally I would go with the Durham area in NC. It should be a bit cheaper to live and you have a great medical facility there where you could get your nursing degree. If you can go for a RN rather than LPN the difference in pay will be substantial. This is especially the case if you get a bachlors degree. NJ will be just as expensive as NY from what I...
  8. ravenwoodglass
    I'm sorry but with those blood test results there is really no doubt she has celiac even if the biopsy was negative, which it wasn't. EE is also often seen in us. Thankfully it was caught and you have a great doctor to look for it. She may not seem to be having GI issues but celiac can attack other organs not just the gut. The thyroid and brain, can lead...
  9. ravenwoodglass
    False negatives are not uncommon with celiac. My false negative results in blood tests cost me years and almost my life. If you are done with testing do give the diet a good strict try. It does take some getting used to but we are here to help in any way we can. Read as much here as you can and ask anything you need to.
  10. ravenwoodglass
    Congrats on the loss. Don't know if I should mention this but last time I had one (a couple weeks ago) they were gluten free. Ingredients do change so check the label before you get one.
  11. ravenwoodglass
    Previous poster gave good advice. You could also talk to the pharmacist and see if there is another med that might be suitable. Be sure this is not gluten ataxia before you take the med as if you actually have ataxia the med may make it worse.
  12. ravenwoodglass
    If you can afford it maybe test the whole family. When I tested with them you didn't have to get all the tests. You could choose one or two. Maybe get your DD's full testing done and do just the gluten tests for the other little one might be an option. I do hope you are able to get some answers and that everyone is doing better soon.
  13. ravenwoodglass
    My hands shook so bad before diagnosis that doctors thought I was hiding alcoholism. I wasn't. Between the shaking and the severe arthritis it made it hard to do anything. Shaking and the arthritis both resolved gluten free. It is amazing how many different parts of the body can be impacted by this disease.
  14. ravenwoodglass
    Welcome to the board. You are replying to a very old thread and things do change. If you have doubt about a product call the company directly. There are many lunch meats that are safe. Hormel has many that are safe as does Oscar Meyer and others. Best to get prepackaged rather than from the deli slicer since the slicer can be a source of CC. Some companies...
  15. ravenwoodglass
    I hope you can convince your husband to test him and then go gluten free for a while to see if it helps no matter the results. I would have given anything to be able to run as a child. Heck I'd give anything to be able to run now. If the diet can give your DS the chance of being able to run and play it is worth a shot. Can't say for sure it will help but...
  16. ravenwoodglass
    I am so sorry you have been through so much. You're not alone as many of us had to go through hell and back to finally get diagnosed. It does take some time to heal and some of us will go through a withdrawl when we first go on the diet. That can make us very moody and irritable. That will pass. It isn't unusual for us to go through a grieving process also...
  17. ravenwoodglass
    Sorry your feeling funky. If you fever is low grade just let it cook as that is your body killing off the nasties. Your doing the right thing by resting as much as you can and I hope your soon feeling much better. Like you my winters were always sick at Thanksgiving and chronic bronchitis by Christmas and into spring. I rarely get sick at all now. I can...
  18. ravenwoodglass

    Happy New Year, Raven!

    I appreciate you-- for being so encouraging to me all year --ever since I joined the forum back in January. It's been a rocky road, but a healing year-- and you were a part of it. You generously shared your time and experiences with me and from my heart, I thank you. My best always, IH

  19. ravenwoodglass
    I had ataxia for years and had progressed to the point where they thought I had MS and would be in a wheelchair soon. I also had DH since childhood and after my children were born developed the more typical GI symptoms along with daily migraines, some with the headache but mostly with the auras. Being gluten free has pretty much done away with the ataxia...
  20. ravenwoodglass
    Anything that contacts a mucous membrane can be absorbed and flare the antibodies. If you are still getting glutened often then drop the cosmetics with gluten and see if things improve.
  21. ravenwoodglass
    I am sorry you are going through this and while I do hope it doesn't get worse it can. Do keep your doctor advised about what is going on.
  22. ravenwoodglass
    I think Cass meant a false negative. False positives are very, very rare if not non-existant.
  23. ravenwoodglass
  24. ravenwoodglass
    You do sound like one of us. As was said do get retested. Just because previous tests were negative doesn't mean they will be now. However it sounds like your diet is very gluten light. That could cause a false negative. If you really need to have a diagnosis then you need to make sure you are getting at least 4-6 slices of bread worth a day. If you have...
  25. ravenwoodglass
    I have one and it gives me no issues whatsoever. I don't know if any of the many GI related issues were from that before I went gluten free though. It was found when my new GI did my over 50 colonscopy and decided he should look at whether my villi we completely healed (they were). Hopefully your SID will see the light soon.
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