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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Biosil is a supplement that has helped some people with weak hair and nails. I took it because of thinning hair (and weak nails) which can be celiac disease symptoms but were helped the most from my thryoid treatment. Many symptoms of hypothyroidism and celiac disease are the same which confuses things - hypothyroidism and celiac disease commonly co-occur...
  2. nvsmom
    Ditto Cyclinglady, you'll need to keep eating gluten until your testing is complete. Hopefully your GP will order the tests. Try to get as many of the previously listed tests as possible because there is not a perfect celiac disease test yet, and these tests can miss a large minority of celiacs. This report has more info on the tests (pages 8-12): Open...
  3. nvsmom
    It's not unusual to not be able to pin point a food sensitivity unless she is on a very restricted diet and you slowly add a food back in. Food sensitivity reactions can start within minutes or within a couple of days, which makes it very hard to figure out the cause of symptoms. I was an undiagnosed celiac for over 30 years, and I still barely figured...
  4. nvsmom
    That's true. I enjoyed the Grain Brain book but I noticed errors, although I can't remember what anymore, when he was discussing celiac disease. He was off on something, as far as I understood it. It was good reading, and I am sure there was lots of science behind it, but many of his ideas are not accepted by the medical community. He could be wrong,...
  5. nvsmom
    That's all the more reason to get tested soon. Imagine having to go back on gluten for 3 months just top be tested (if you go gluten-free for a few more weeks). Ugh! It is pretty normal to be shocked by how bad gluten can make you feel after going gluten-free for a while. My theory is that after eating gluten for a while, your body gets used to it and...
  6. nvsmom
    Eating gluten lite doesn't help a celiac. I did not eat a bunch of gluten before either but a crumb a few times a month is more than enough to prevent us from achieving good health. Stay strict and hang in there.
  7. nvsmom
    Welcome to the board. Ditto the others. It is probably a good idea to get tested for celiac disease before you go gluten-free. Most doctor require 8-12 weeks of 1-2 slices of bread per day prior to blood testing being done. If you go gluten-free now, you'll have to reintroduce it for a few months, and go back to feeling poorly... Hard to do for many...
  8. nvsmom
    Welcome to the board. I agree that you should not rule out celiac disease yet. My cousin's son, who also has celiac disease, only had brain fog for a symptom and nothing else. He is tall, strong, and never gets a stomach ache unless he eats too much junk. And remember, some celiacs get no obvious symptoms at all - low nutrients and mild anemia may...
  9. nvsmom
    I think hypothyroidism also affected that for me (could have been the celiac disease though). Biosil is supposed to be very good for hair and nails.
  10. nvsmom
    My guess is that you have not been gluten-free long enough for it to make any real difference yet. It can take weeks to months (sometimes years) gluten-free before people are truly well. You'll see improvements but recovery is often two steps forward and one step back, even if you are gluten-free. Recovery is not linear - at some times it will be fast...
  11. nvsmom
    Ditto everything Laura said. That was great advice. I agree that you might as well be tested but also get others issues looked at like rheumatology for lupus or rheumatoid arthritis, but also for things like hashimoto's and other AI diseases). Celiac can cause a lot of pain too. I had some very severe joint issues that began in my early 20's. At...
  12. nvsmom
    I get shaking hands too. If I hold a fork, chances are it is trembling a bit. It does get worse when I am hungry or have been eating sugar or more caffeine than usual. For me, I think it is pretty harmless. They've been shaking for many years and it hasn't got much worse. Hang in there.
  13. nvsmom
    Mmm. Beer. Enjoy a stout for me.
  14. nvsmom
    Wow is right. You just can't get a break... Years ago, almost decades ago (yikes), my TSH was swinging in and out of normal in a manner of days - it can be pretty nuts. Well... now you should consider if your symptoms (headaches) could be from going (more) hypo. Your FT3 is pretty dismal compared to your FT4... I wonder if that is your RT3's...
  15. nvsmom
    You might want to read a few books on celiac disease, and maybe get some cookbooks out of the library. Nutritionists can be helpful, but many don't know a lot about eating gluten-free. Welcome to the board.
  16. nvsmom
    I'm sorry you've had such a hard time. Hopefully once you are well, things will change for you. When a celiac goes gluten-free, the body does not usually stop making autoantibodies right away. It can take many months, or even years, for the tests to start coming back normal. When those tests are abnormal it means that your body is still under attack...
  17. nvsmom
    It's probably not from gluten. Generally they don't put gluten on envelopes anymore.
  18. nvsmom
    Oh no. Are you planning on giving it a bit longer? When I started on NDT I had D, but it eventually evened out... mostly. Could it be anything else? I go through periods where I have headaches a lot. I have no idea if it is linked to thyroid meds because it was so much worse before I went gluten-free. Still, I have weeks where I always wake...
  19. nvsmom
    First degree relatives should be tested every couple of years, or sooner if they have symptoms, because their chances of getting celiac disease are so much higher - I have heard anywhere between 1 in 10 and 1 in 22, compared to 1 in 133 for most people. There are hundreds of celiac symptoms to keep an eye out for. This is a pretty comprehensive list...
  20. nvsmom
    If you had positive tests, then you are a celiac. Try to get them to understand that. Making you sick to prove you are sick seems not too smart. I agree that symptoms can wax and wane. I had good weeks and bad weeks, and even good years and bad years, although the bad became more common as time went by. Remember that symptoms of celiac can be...
  21. nvsmom
    That's a too bad that you aren't feeling well. It would be nice if you could enjoy your last weeks of gluten, eh? Good luck with it!
  22. nvsmom
    The fact that going gluten-free will reduce any future health risks back to normal levels is something that many celiacs seem to miss. If we are careful with our diet, then we are healthy. We might still have a slightly higher risk of developing other autoimmune issues but staying gluten-free will help minimize that too. Well said. Welcome to the...
  23. nvsmom
    Almost every celiacs will have negative blood tests after being gluten-free for a few years, even if they accidentally ate gluten by mistake very recently. There is no way to tell if you have celiac disease or NCGS based on the tests you ran. You could try the genetic tests but that won't tell you if it is celiac disease either, just if you are part...
  24. nvsmom
    Be aware that your gluten challenge is quite long for a biopsy, 2-4 weeks (or as long as 6) is much more common. Because yours is so long, you can probably eat a bit less gluten. Gluten requirements range from 1/2 to 4 slices of bread per day with 1-2 slices of bread (IMO) being the norm. You could probably get by with 1/2 slice, or 1 slice, per day, but...
  25. nvsmom
    Pages 8 and 9 of this report discuss biopsy results: Open Original Shared Link To me, and I don't know much about the biopsy, it looks like something is off, and there is some damage, but there wasn't enough for a definitive celiac disease diagnosis. Marsh 1 damage but they do not usually give a celiac disease diagnosis until Marsh 2. It doesn't mean...
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