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Aly1

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Aly1

  1. Aly1
    I am in a similar position. My health has been devastated the past 10 years and I couldn't find out why. I tested negative for celiac but I get so sick from gluten that I can't help but tie the two together. I am in a wheelchair and have no official diagnosis to explain that to family members and friends and it frustrates the heck out of me. What I've...
  2. Aly1
    So I heard back from our pediatrician this morning - apparently all of my daughter's tests (including ttg) were normal, except for one test, the anti-gliadin test, which was abnormal. But he says that since all her other tests were fine he views that one as a false positive. Does his opinion ring true / make sense to you guys here? Sounds reasonable but I...
  3. Aly1
    That was a great resource, thanks so much for posting it. We already saw the pediatrician but I am going to print this and put it in the mail, and see about getting the gene testing done. Thank you!
  4. Aly1
    As would I! Except, that would likely require a gluten challenge and I don't think I could make it through that.
  5. Aly1
    I am new to gluten-free and new to knowing I have a problem. It dismays me to read these comments and what I can expect to hear from people. I don't really understand why people have opinions about things they know nothing about. I have been in a wheelchair due to neuropathy for 5 years. I am able to walk but the pain I had before my wheelcbair was so severe...
  6. Aly1
    UKGail: I can't believe you have to worry about airborne contamination! I would fine that a bit overwhelming I confess. As for your newly diagnosed friend, you never know how she'll be reacting down the road - I've seen many people saying how overly sensitive their reactions get after a few months gluten-free, and that's been the case for me too. ...
  7. Aly1
    A lot of docs won't officially diagnose you without the endoscopy so it depends on how important an official dx is to you...
  8. Aly1
    I would send a note to the doc and let him know the staff informed you that you do not have celiac. This is important - imagine someone else with less knowledge being told that - that misinformation could really do some harm and that staff member needs to be educated. The doc is the person to do that, they won't really listen to you...
  9. Aly1
    Wow that is so offensive I have nothing to say! Speechless.
  10. Aly1
    Thanks Irishheart
  11. Aly1
    I do nibble on celery & carrots but those won't help me gain weight. I am currently avoiding nuts & seeds as I seem to react to them right now...
  12. Aly1
    There have been some *great* responses and I am glad to have some confirmed safe options to try. I do want to eat a mostly unprocessed diet and do - but I find that while I'm fine for lunch and dinner, breakfast time and snacks are hardest. Since I first posted this we have successfully made muffins which I enjoy for breakfast (successfully means, finally...
  13. Aly1
    Thanks for the support, its hard to navigate all of this and separate logic and emotion, especially where my daughter is concerned. It sucks to have a medical problem where researchers are only just starting to figure out what's what. Comments like the one in CR just compounds the problem of people not taking gluten and it's effects seriously. Sigh.
  14. Aly1
    How exciting! Good for you.
  15. Aly1
    Yes please!
  16. Aly1
    Okay now I totally get it. Thanks for clarifying!
  17. Aly1
    Yeah I think that's what I want to hear . I've read so much on this board but honestly never paid much mind to whether a person was celiac or NCGI - if gluten was bad for them I believed it, in that context the DX wasn't very important. I think today I am really second guessing myself because I put my 2.5 yo daughter through a rough blood test yesterday...
  18. Aly1
    My hubby cooks up cannelloni beans and brown rice with onion, garlic and seasonings. Yummy!
  19. Aly1
    Hmmm, one part of that article says "Unlike celiac disease, gluten sensitivity hasn't been linked to intestine damage and long-term health problems". I've done tons of reading and the latter part of that statement is contrary to what I thought I'd learned... I guess I'm trying to find out from people who have Lived it, how bad it can be, and whether you think...
  20. Aly1
    I agree with the previous poster but also, keep in mind you are exercising new 'muscles'. You have avoided doing things a long time and that is what your body is accustomed to - it can be hard to break the cycle when you are used to reacting to a situation a certain way over and over again. So realize there will be days where you do great and then some days...
  21. Aly1

    ARCHIVED Joint Pain

    Aly1 replied to tbritt's topic in Coping with Celiac Disease

    I do get tendinitis in my wrists really badly, it was one of my very first problems. Nowadays I also get stiff and sore finger joints when I eat corn, so I avoid that too...
  22. Aly1
    For me it was at about the 3 month mark...I'm at 4 months and still in the middle of dealing with it... :0P
  23. Aly1
    In the current issue of Consumer Reports onHealth there is a section "Should you avoid gluten?" in which I read the following statement: "While gluten intolerance can be unpleasant, it's not harmful to long-term health and isn't as serious as celiac disease." I am new to the NCGI diagnosis and gluten-free diet, and I have major health complications...
  24. Aly1
    And another note - if gluten does Not turn out to be a problem for you - I get deep aching pain in my bones from eating sugar and variety of other things too lengthy to list here. I also got it from gluten. Point is there are many things that we eat that can cause pain and do harm so gluten may not be the end of your need to explore diet as a possible cause...
  25. Aly1
    Ps. Yes it's hard, but believe me, we wouldn't all be eating that way if it didn't make us feel So Much Better. And that's pretty much priceless!
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