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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Good luck.... It scares me that me kids are getting older and they'll have to be responsible for their own health - I hope they treasure it.
  2. nvsmom
    (((hugs))) I'm glad this new doctor knows her stuff. The first few month gluten-free are the toughest - getting used to a new way of eating and thinking about food. I bet by the time spring rolls around, you will all be pros at this. Are you getting the rest of the family checked for celiac disease? You might want to get your son checked out too....
  3. nvsmom

    ARCHIVED The Weight Woes

    nvsmom replied to Zeko's topic in Coping with Celiac Disease

    That's gotta be frustrating. What does a typical day's menu look like for you? Are you still consuming dairy? That can bother a lot of people, and a casein intolerance can lead to damaged villi and malnutrition issues just like in celiac disease. You are gluten-free right? You're not getting glutened at all?
  4. nvsmom
    I was mad. I felt totally ripped off. I missed decades and decades of good health (to hashi's and celiac disease) because three different family doctors were too dense to pick up on my symptoms. The only autoimmune disease they picked up on was when I hit critical... I really don't trust doctors farther than I can throw them now a days. LOL After...
  5. nvsmom
    I'm afraid I don't know anything about the saliva tests, I don't know how widely accepted or dismissed those are. I just wanted to add that it could be NCGI or early celiac disease so if there are no more tests to be run, she might want to try going gluten-free for a few months to see how she feels.... That's what I had to do with my boys.
  6. nvsmom
    Your symptoms really do sound like celiac disease or non-celiac gluten intolerance (NCGI). I'm sorry you've been feeling so poorly, but I must say that I'm impressed that you figured out the gluten connection for yourself! Nice job. There are celiacs who also have an allergy to wheat (there is no known allergy to gluten, just celiac disease which is...
  7. nvsmom
    Good idea to use the DGP to double check the diet!
  8. nvsmom
    Someone around here said IBS is doctor talk for "I Be Stumped". LOL A large number of us were told we have IBS,which is not really a diagnosis (in my opinion) but more of a description of how the patient feels - it doesn't get to the "why" of a problem at all. Some symptoms will improve within days whereas others can take months or years. From what...
  9. nvsmom
    Welcome to the board. Your tTG IgA is a positive but not a super high results that some celiacs can get - note that I did say "some" - and not necessarily the majority either. In 95% of positive tTG IgA's, the cause of the positive is celiac disease. Because to also have an almost positive gliadin peptide test (DGP IgA I am guessing), I think that would...
  10. nvsmom
    I understand what you mean. Celiac disease is serious but we as patients have total control over our treatment. It's not like other autoimmune diseases where the body's attack on itself can't be slowed or stopped and only symptoms are treated. I do agree with the others though that because your tTG is double the upper limit after an entire year on the gluten...
  11. nvsmom
    I hate to say it, but I think your doctor is wrong... Without a doubt. I believe that you do have celiac disease. The tTG IgA test is about 95% specific to celiac disease which means that 95% of the time a positive test will be caused by celiac disease.... That's pretty accurate and reliable. The EMA IgA is even more specific to celiac disease; a positive...
  12. nvsmom
    Levels can stay high for a long time but it is strange that the tTG IgA is still so high. My own tTG IgA was elevated at over a year gluten-free too but there was a definite downward trend from over 200 to a 20 point something ( my range is about the same as yours). The fact that yours is still double the upper limit is worrisome... At least your EMA has...
  13. nvsmom
    Welcome to the board. Ditto everything Colleen said: healing can take quite a while. Some symptoms improve immediately, others feel worse for a few weeks if they experience withdrawal, and others find recovery is not steady with symptoms that backslide sometime in the first year... And those gluten challenges can take quite a toll on people; it may...
  14. nvsmom
    Thanks guys.
  15. nvsmom
    I decided to stop testing with two positive celiac tests too. My tests were tTG IgA (>200 with range of 0-20) and EMA IgA (1:40 titre), so a little different than yours but my two tests are very specific to celiac disease - I was satisfied. Generally, if a test is giving a false positive, it is usually a weak positive, and your results were anything...
  16. nvsmom
    Well, they're referring me to endocrinology.... Maybe I'll find out some more answers by the new year.
  17. nvsmom
    No dumb questions here. Most places don't have a problem with food brought in, at least in my experience. I usually make a point of ordering a drink when I do that rather than my old standard of water. That seems to be enough when I am with "normal" diners. I rarely take my family out to eat because 4/5 of us eat gluten-free so it just isn't practical...
  18. nvsmom
    I agree with GFinDC, in does sound like it could be celiac disease. If you plan on testing, do it sooner rather than later so the gluten challenge can be a bit shorter - 3 months back on gluten can be really hard on people after they have gotten used to feeling well instead of poorly. This site, on pages 10-13, discuss the tests that can be done, the...
  19. nvsmom
    Ditto the others. It will take you more time to get used to it all. It is a bit weird bringing food places at first but within a few months, you get used to it. Perhaps put the money you were spending on eating and drinking out towards some gluten-free treats for yourself? Hang in there. They make Chocolate Chex!!!??? Ugh! Why don't they...
  20. nvsmom
    It is nice how most people (in my experience) will go out of their way for us or are at least understanding when we bring our own food... at least the people who care about us. It's nice when they try to understand.
  21. nvsmom
    The numbers that I usually quote are from the Open Original Shared Link On page 12 it shows that the tTG IgA's sensitivity (how many cases of celiac disease out of 100 it would catch) is 75-95% - meaning it misses 5-25% of celiac disease with false negatives- and the specificity (how many cases of 100 positives are actually celiac disease) is 91-99% - meaning...
  22. nvsmom
    Celiac disease affects the small intestine (after the stomach). It's the villi that get damaged from our bodies overreaction to gluten... It's like a shag carpet in there, and in celiacs the fuzz can get worn off the shag and then it just gets smoother. It's where a good portion of our food is digested and absorbed. Endoscopies are used to look at this area...
  23. nvsmom
    Some think that adrenals get worn out after dealing with illness/autoimmune issues for a long while. Adrenal fatigue is not a completely accepted idea but I think it has merit myself. I hope she gets clear results.
  24. nvsmom
    I use no-name brands and just call it tylenol, but gluten is not listed on the ingredients, and I almost always read the ingredients before I buy anything.
  25. nvsmom
    L-glutamine can help with healing but I don't believe it does much for the symptoms. Rest and tylenol are helpful to me. Good luck if you are recovering at the moment.
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