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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    We even heard about the storm up here (Alberta, Canada). When the east gets hit, we in the west usually have mild weather. We've been breaking record highs for the past few days. I think it is 15C right now. Good luck with the snow.
  2. nvsmom
    Most labs tend to stop counting at a certain level. For instance, my lab's tTG IgA range was 0-20 and my result was >200. I have no idea if I was 201, 350 or 1000. Not many lab's give an actual number beyond a certain point. The ttG IGA can take months or years to get down to normal. My last check was at about 9 or so months gluten-free, and my tTG...
  3. nvsmom
    You may be able to try again one day; just give it a year or so first. Feel better.
  4. nvsmom
    Huh. Why in the world would they have put that in a chapter about celiac disease? Celiacs can't have gluten at all. That baking tip may be true for people who are having sugar/starch absorption issues, but it definitely is not true for a celiac. All gluten, in any form. will cause us problems.
  5. nvsmom

    ARCHIVED Breakfast

    nvsmom replied to nme23's topic in Coping with Celiac Disease

    Eggs, dinner for breakfast, bacon, fruits, fish... you could eat anything really. I like to have coconut cream in my coffee throughout the morning. It keeps me full until about 2:00.
  6. nvsmom
    I agree that it sounds odd. Get copies of his biopsy, tTG IgG, and DGP IgG test results - those are the only tests that will tell you anything in his situation.... A second opinion might be a good idea. Even the fact that he is IgA deficient would point (a bit) to celiac disease. 1 in 20 celiacs are IgA deficient whereas 1 in 700 are in the regular...
  7. nvsmom
    Welcome to the board. Like Cyclinglady said, make sure she keeps eating gluten until all celiac disease testing is done. Those celiacs who are gluten-free will eventually produce false negative test results. Ask for as many tests as you can get: ttG IgA and tTG IgG - tissue transglutaminase is the most common test DGP IgA and DGP IgG - deaminated...
  8. nvsmom
    My butterfly-like rash may just be due to rosacea, but I'm not sure.... I just know my nose goes red if I drink. LOL The mouth ulcers come and go, but they do tend to show up when I'm not at my best - also symptoms of celiac disease and possibly hashi's. I had symptoms of SLE but my (SLE) labs came back normal and that's why I was dismissed. I'm assuming...
  9. nvsmom
    I agree with all of the others: Do not have her go gluten-free until after testing is done. If you decide to try the gluten-free diet because she may be non-celiac gluten sensitive (NCGS) after the testing is done- that is fine. Just remember that the blood tests require that the patient be consuming gluten (somewhere between 1/2 up to a few slices of bread...
  10. nvsmom
    I agree that you might as well get tested. Those symptoms could be celiac disease (or SLE or hypothyroidism). As the others said, do not go gluten-free until testing is complete. Get as many tests done as possible; like SLE testing, celiac disease tests can miss (up to 25% of) celiacs. These are the tests to ask for: tTG IgA and tTG IgG DGP IgA and...
  11. nvsmom
    Yes, hang in there. It will get better. I am pretty sure I had undiagnosed celiac disease my entire life. My childhood had a lit of C and stomach aches, and the beginnings of joint pain (which they called growing pains). In my teens I started getting migraines and developed an autoimmune bleeding disorder. In my 20's, hypothyroidism showed up but was...
  12. nvsmom
    Mmm. Oh yes. Mix them in with some nuts or seeds and i am happy.
  13. nvsmom
    I was goinf to add the same though as Laura, are you sure you have the gluten-free waffles. I accidentally bought the normal waffles when I saw a sale, but luckily we discovered our mistake before we opened the box - It pays to double check the labels on products you don't normally buy.
  14. nvsmom
    If you are just looking for gluten-free or dairy free candy, those sweetened with corn syrup won't be any added risk for you. Corn does not contain gluten. There are some people, and some celiacs, who have a food intolerance to corn (of varying degrees) but beyond that, corn and corn syrup is safe for celiacs. Best wishes.
  15. nvsmom
    If you know what you can and can't eat, my guess is that you won't get much from a nutritionist. It might be better to see a doctor and get your nutrient levels tested, then treat those deficiencies. The main ones to check are: K, Mg, Fe, D, B12, ferritin, A, Zn, Cu, and.... I'm forgetting something else. Hmm. Anyway, If you know your low nutrients...
  16. nvsmom
    If possible, go to a gluten-free restaurant and there will be no stress at all. I tend not to eat out. Even when I grill the waiter, and go to the kitchen to read the labels (I've done it for my kids), I still get glutened about a third of the time. If I go out, it is usually for coffee, drinks, or ice cream.... Going for ice cream is often more fun...
  17. nvsmom
    I saw a clip of that episode, it was embarassed for for her. I don't know what she was thinking; she completely changed the subject and went on a rant about people who order gluten-free and how celiac is the new "it" disease to be pitched by celebrities trying to make a buck... It was pretty ignorant. And didn't she work with Elisabeth Hasslesomething...
  18. nvsmom
    Yes, they missed a few: tTG IgG, DGP IgA, and maybe the EMA IgA (but that is usually negative if the ttG IgA was). They could also do the endoscopic biopsy - some people have negative tests but a positive biopsy. I wish her luck with the gluten-free diet (after all testing is done).
  19. nvsmom
    Gluten containing food can cause a reaction in a matter of minutes or sometime in the next couple of days. It could have been gluten or some other reason... it's hard to say.
  20. nvsmom
    Some doctors believe that the AGA IgA and AGA IgG (anti-gliadin antibodies) could indicate NCGS (also called NCGI) as well as celiac disease but that is not a widely accepted belief. The tTG IgA and tTG IgG (tissue transglutaminase) will cause damage to the endomysial layer of the intestines. Those tests will NOT be positive because of NCGS. A weakly...
  21. nvsmom
    Make sure you get the free T3 and free T4 and not T3, T4, or total T3 or total T4. The frees will tell you much better what is going on in your body. They should be the primary diagnostic test: what hormones are actually available for use in your body, and not a thyroid stimulating hormone (TSH) made by another gland (which may not be interpretting hormone...
  22. nvsmom
    Welcome to the board. Yep, the first few months are tough but then you find your substitutes and get used to bringing food everywhere, and it seems easier. Truly it does. Plus behaviour issues often improve after a few months gluten-free. My oldest, who we think has Aspergers but we never finished the diagnostic process, went gluten-free and his...
  23. nvsmom
    Welcome to the board. There is no other way to find out if you have celiac disease beyond the blood and endoscopic biopsy besides the skin biopsy for the dermatitis herpetiformis (dh) rash. You might want to check the dh forum on the board and ask some questions there. I don't know much about that presentation of the disease beyond that it is a maddeningly...
  24. nvsmom
    I think it is best to move ahead assuming that she does need more time (pain can take months to resolve) but keep looking for other answers while double checking that her diet (and toothpaste, soaps, lotions, vitamins) is all gluten-free. I hope your daughter feels better soon.
  25. nvsmom
    Looks like a really good blog. Thanks!
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