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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Interesting. The EMA IgA's ability to detect early celiac disease surprised me. It usually doesn't show up until there is already damage (from tTG IgA) and then it tries to wipe out the top damage layer of the villi... like a second wave of attack. At least that how I understood it.
  2. nvsmom
    Oh dear. The doctors told her to continue eating gluten in spite of multiple positive tests just because they didn't happen to biopsy the areas that were damaged. Did they say why they did not think her positive results were caused by celiac disease? Most celiac tests are pretty specific to celiac disease. The tTG IgA is one tests that has a "high" false...
  3. nvsmom
    The tTG IgA can indicate other illnesses like thyroiditis, diabetes, crohn's, colitis, liver disaese and even serious infection BUT when that occurs, it is (in my experience) always a weak positive and not with a result that is over double the upper limit of the test. Also, the tTG iGA is between 91-99% specific to celiac disease so few (weak) positives...
  4. nvsmom
    `Oops I did mean to eat gluten. Thank you! I am editing the previous post that I made.
  5. nvsmom
    Ditto Bartfull. Continuing to eat gluten will keep your level of inflammation extremely high and that can help tip your body into another AI disease. In hindsight, I've had untreated celiac disease since babyhood, and it makes me wonder if my other AI disorders might not have developed if I'd lived a gluten-free life.... Eating gluten-free as a celiac is...
  6. nvsmom
    A food journal might help you figure it out. It could be something that appears harmless like apples, pears, or rice... although my first guess would be milk too. Good luck.
  7. nvsmom
    LOL Really? Don't mess with me, I'm trying to eat better after halloween junk food and that sounds like a pretty good compromise. LOL
  8. nvsmom
    No, just celiac tests require a gluten challeng of two months. Thyroid testing can be done at any time and is a separate issue. Good luck!
  9. nvsmom
    It is possible to have celiac disease with negative biopsies and tests, but it's unlikely. It is possible that you were not back on gluten long enough for accurate blood tests; a month should have been enouh for the biopsies but for blood tests doctors usually recommend about 2 months on a gluten challenge. It's also possible that your symptoms are caused...
  10. nvsmom
    Sounds like a good plan. The full celiac panel is: tTG IgA and tTG IgG DGP IgA and DGP IgG EME IgA total serum IgA (a control test) AGA IgA and AGA IgG (older and less reliable test but though by some to show non-celiac gluten intolerance (NCGI) as well as celiac disease) Get as many tests as possible; some doctors only run a couple. She may...
  11. nvsmom
    The longer you are gluten-free, the higher the chances that any celiac test will yield a (false) negative result. It IS possible to still have positive autoantibodies after 5 months gluten-free but I would say it's more likely that they will be negative. I personally still had a weak positive tTG IgA result after about 15 months gluten-free (it had fallen...
  12. nvsmom
    I doubt that will be a common problem amongst celiacs or those with NCGI. Autoimmune diseases tend to age a person. I'm a bit stooped from back issues, have thinning hair, acne... not things that help us look young. Sun tanning could give you some wrinkles...
  13. nvsmom
    The doctor's response smells fishy to me... If he thought the tTG IgG test was such a bad test for celiac disease, then why did he order it in the first place? And my cousin's son, who was 10 at the time of his celiac disease diagnosis ONLY had cognitive and attention issues for symptoms and nothing else... nothing. I have seen a lot of people with a...
  14. nvsmom
    Spinach and chocolate... Not at the same time, right?
  15. nvsmom
    My thyroid symptoms felt a LOT like celiac disease symptoms, and low energy was top of the list. I would get it checked. Don't accept "normal" unless they ran all thyroid tests like TSH (should be near a 1 regardless of the range), free T3 and free T4 (ideally in the 50-75% ranges of your lab's normal reference range), and TPO Ab. The problem with thyroid...
  16. nvsmom
    I believe my arthralgias were linked to gluten so I would say, yes they go together. I am not sure if celiac disease was the sole cause of my pain, but it definitely contributed - and played a role for many months after going gluten-free. The last time i had a pain flare up was when I was gluten-free for about 3 months, and it lasted over three months....
  17. nvsmom
    Welcome to the board. You might as well get tested for celiac disease. Many of your symptoms could be linked to celiac disease or non-celiac gluten intolerance (NCGI) so you might as well go for it. Continue to eat gluten until testing is done or it may not be accurate, 2 slices of bread per day is enough. The tests to ask for are the tTG tests, DGP tests...
  18. nvsmom
    Understandable!
  19. nvsmom
    That sounds like it could be withdrawal; about a third of celiacs go through it. When I went through it I as so exhausted no matter how much I slept, I was incredibly cranky and irritable, and I had a migraine that lasted for days. Overall, I was out of withdrawal after about two and a half weeks. Give it time to pass, but as karen suggested, keep an...
  20. nvsmom
    Oooooh, excellent visual! I must steal this from you - my boys will appreciate it!
  21. nvsmom

    ARCHIVED About Done

    nvsmom replied to w8in4dave's topic in Coping with Celiac Disease

    (((HUGS))) Waiting is the worst. Not knowing what you are dealing with is a huge strain... Hang in there.
  22. nvsmom
    Have you considered making him gluten-free? It is possible he has non-celiac gluten intolerance (NCGI) which has ALL the same symptoms as celiac disease except the villi damage. It's also possible that his tests weren't accurate if he is new to the disease; the deaminated gliadin tests are generally the best to use on new cases or in very young celiacs -...
  23. nvsmom
    Welcome to the board! I've been using bee pollen for years and I would guess it is safe - mine lists no added ingredients. If in doubt, get in touch with the manufacturers and ask then directly if there is gluten in it. My guess is that you are experiencing a withdrawal from gluten containing foods. I experienced that from about day 3 to day 19...
  24. nvsmom
    You probably are going through a bit of withdrawal and then have the cold on top of it... unlucky you! Withdrawal usually hits within a few days and can last up to a few weeks. If it is affecting you, hopefully it will be over soon. When colds swing back for a repeat, it usually (for me) means a secondary infection like in the sinuses, ear, or chest...
  25. nvsmom
    I`m not good with interpreting biopsies, but I think the lack of villious atrophy would indicate there is no celiac disease. You had some inflammation and damage that does appear to point to reflux (which celiac disease can cause or make worse). If you are concerned it could be celiac disease, I would suggest getting the blood tests done. Things can...
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