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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I hope you manage to avoid the ER! Good luck.
  2. nvsmom
    If your body can handle the gluten challenge, you might as well be retested. As G - F Lover said, sometimes a shorter gluten challenge will show a positive test, so it can be helpful to test early, but if it is negative at two weeks into a gluten challenge, it may be a good idea to test again in two months.... if your body can handle it. The biopsy just...
  3. nvsmom
    Start a food and symptom journal right away if you can. Having the "proof" in writing can sometimes be helpful with docs. Good luck!
  4. nvsmom
    Welcome to the board. I'm sorry to hear your daughter has had such a rough time, but hopefully she'll be feeling well before the summer ends. You might want to check her nutrient levels too. Celiacs are often low in Ca, Mg, Fe, K, A, ferritin, zinc, Cu, B12, and .... I think I'm forgetting something. Hypothyroidism and diabetes are more common among...
  5. nvsmom
    It can be a pain, but I find that if I get in the mindset where I bring food for myself, and sometimes for everyone, it just goes so so much easier. I find it is good etiquette to bring something along when you go to someone's house anyways, so instead of bringing wine, I bring food, then I'm never a self centered pain to invite over. It's true that...
  6. nvsmom
    Welcome to the board, Dania. It looks like you are negative for celiac disease but with just one test run, you can't be sure. As you said, having a total serum IgA is a must so you can know for certain if your result is valid. 1 in 20 celiacs is deficient in IgA, which is more than the regular population, so ideally you should have that run. The...
  7. nvsmom
    If you can, get a hold of your results and share here - not all doctors are great at interpreting tests so an extra set of eyes might help. If you are sure your blood tests are done, then you could go gluten-free for a while. The full celiac disease panel includes the tTG IgA and IgG, DGP IgA and IgG, EMA IgA, and total serum IgA. If you only had one...
  8. nvsmom
    I hear you! Eating gluten-free is a hassle, but it is usually easier to deal with than many other illness - the gluten-free diet has fewer side effects than most treatments.
  9. nvsmom
    What tests did the doctor do? I ask because many doctors just run one test, and celiac tests do not have a high sensitivity - some can miss up to 25% of celiacs. This is the full celiac panel (in case you want to check): tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA total serum IgA (control test) AGA IgA and AGA IgG (older and less reliable tests...
  10. nvsmom
    I tend to use stevia for sweetening my baking when fruit isn't enough to make it sweet.
  11. nvsmom
    I tend to keep my meals to meat and potatoes or rice when company comes over. I serve one of those naturally gluten-free meals that non-celiacs have never realized have no gluten. I have a picky family so simple is better. LOL Desserts are usually angel food cake with strawberries and whip cream, or brownies and ice cream. Cookies usually work well too...
  12. nvsmom
    I've never heard about people outgrowing NCGS. I have my doubts that one would outgrow it but that is completely a guess. I do know that some cases of NCGS "become" celiac disease according to some studies. My guess is that in those cases those people already had celiac disease but became sicker so it was finally measurable... Not ideal. I would...
  13. nvsmom
    Like the last couple of posters, I was a "normal" thyroid tester for years but it really was hypothyroidism - they just looked at the wrong things. Definitely get your lab reports. I have found that generally thyroiditis patients feel their best when the TSH is near a 1, free T4 and free T3 are in the 50-75% range of your lab's normal reference range...
  14. nvsmom
    :) Congratulations!
  15. nvsmom
    How about a recipe for nut free buns? We have a tree nut allergy in our house that this wouldn't work for... and to be picky, he doesn't like coconut flour. I am a short order cook on some days.
  16. nvsmom
    Being off and on gluten could affect your results - if it is positive I guess it will be a moot point. Let us know when your results come it. Hopefully they ran a bunch and not just a tTG IgA. When you are in for your colonoscopy, could you have the endoscopic biopsy for celiac disease done at the same time? It might be worth checking into rather...
  17. nvsmom
    (hug) The tests for celiac are: tTG IgA and tTG IgG - anti-tissue transglutaminase antibodies DGP IgA and DGP IgG (a new test that is the best for detecting celiac disease in young children) - deaminated gliadin peptide antibodies EMA IgA (positive usually only in advanced cases) - endomysial antibodies total serum IgA (a control test) AGA IgA and...
  18. nvsmom
    The symptoms of celiac disease and non-celiac gluten intolerance (NCGI) are about the same (and your symptoms sound similar to mine) but those with celiac disease seem to be at higher risk of developing other health problems if they continue eating gluten. Luckily both problems are treated with a 100% gluten-free diet, so if you stick with the diet, and...
  19. nvsmom
    Good for you! Sounds like you made her day.
  20. nvsmom
    Good luck! I hope you get your results soon - waiting is horribly hard!
  21. nvsmom
    Oh, poor little cutie. That bloating can hurt. I remember standing on my head or hanging off the edge of my bed (head down) trying to get relief.... I agree that he is the poster child for celiac belly. If you have to wait a ridiculously long time to see the doctor, you could always go gluten-free now. Please know that it will make testing harder...
  22. nvsmom
    I hope you hear soon - waiting is hard! Bloody stools can be caused by irritation and hemorrhoids. I know she seems young for that but that D irritation could cause it. I had C problems in my past, but I had visible hemorrhoids by around age 20 and bloody stools are not uncommon.... Something to ask the doctors about - they know more than me. Good...
  23. nvsmom
    I agree that you might want to push that biopsy back a bit. Autoantibodies can linger a long time after going gluten-free. Many celiacs will still have autoantibodies after a couple of months gluten-free, and some still have measurable levels after a year gluten-free - if the are autoantibodies, there is probably damage. An easier move might be to recheck...
  24. nvsmom
    I know that that can be true of the tTG IgA but I do not know if that is also true for the tTG IgG. A weak positive tTG IgA can rarely (<5%) be caused by diabetes, thyroiditis, crohn's, colitis, chronic liver disease, diabetes, and a serious intestinal infection. Unlike the IgG immune system which affects the mucosal linings, the IgG part of the immune...
  25. nvsmom
    OOPS! I did read it wrong. Sorry about that! Well, most of what I said would still stand. He will test negative in all IgA based tests - they are useless to him. The tTG IgG is the test that matters... and it's positive. Think of it sort of like getting a weak positive pregnancy test. The test may be barely positive compared to another woman's...
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