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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    (hugs) From my third to sixth month gluten-free, I felt my worst. I would get periodic (autoimmune) arthralic attacks with a lot of fatigue and hair loss in the past to the point that I was looking into lupus. I saw a rheumy at that time and she was positive that it was all caused by lingering celiac/gluten intolerance issues. I am hoping she is right because...
  2. nvsmom
    When you do go gluten-free, make sure you give it many months before you decide if it's helping. For some like me, going gluten-free went like this: First feel awful for about two weeks with a headache, fatigue and grumpiness (fatigue). Next I felt great and lost weight for about two months. From months 3-6 I felt really poorly and had a lot of pain and fatigue...
  3. nvsmom
    Oh yeah! Those first few weeks are nasty! I was so tired and grumpy... yuck. It lasted about 10 days or so for me. Hang in there.
  4. nvsmom
    ((HUGS)) Doctor appointments like that are the worst. How they think it's a bad idea that we try to educate and treat ourselves when our 15 minute appointment with them isn't enough to fix us, is beyond me. Do you have a copy of your endoscopy results? There are some really knowledgable people in that area around here who might be able to help interpret...
  5. nvsmom
    I think some are helpful. I have friends who see them and it works for them. I've never been myself so it can't really comment.
  6. nvsmom
    Welcome to the board. You've got a pretty common triad, that's for sure. There are more than a few board members around here dealing with similar issues. I myself have hypothyroidism but skipped PCOS in favour of a different autoimmune problem. LOL The good news is that other AI problems often improve after a time (months to years) on the gluten-free...
  7. nvsmom
    The outside/bottom of the wrap is just cotton, but the inside/top has a plasticky layer that is totally waterproof and easy to wipe off. My kids don't mind using them, but they do "forget" (ignore) them unless I put it on the top of their lunch. LOL
  8. nvsmom
    I agree. I don't react immediately every single time I was glutened, but the severity of my symptoms do grow with time (repeated glutening). From what I know of biopsies (and I'm not the most knowledgable) you have autoimmune cells moving into your villi. I think it would be rated as a Marsh I or II. Most doctors won't diagnose celiac disease until a...
  9. nvsmom
    The stat I see over and over is that approximately 50% of celiacs are lactose intolerant at diagnosis. The theory behind that is because lactase is made on the intestinal villi, so if the villi is damaged, it can't make lactase. I am guessing that it could be linked to the inflammation though.
  10. nvsmom
    Doctors who admit they don't know something we don't are very rare. I think doctors who admit they don't know something and actually work to learn more are close to extinction. The tTG IgA does catch most celiacs but it's sensitivity is some where between 75 and 95%, which means 5 to 25% of celiacs are missed. If your test is negative, and you feel...
  11. nvsmom
    I know that the Smarties up here in Canada as seen Open Original Shared Link have wheat in them, at least their Halloween small packs do.
  12. nvsmom
    I get the same GI symptoms from dairy as from celiac disease. I'm not willing to reintroduce dairy to test if my joint pains were related to dairy consumption... While I do miss a good chees, it's not worth risking the pain at this time.
  13. nvsmom
    The anti-gliadin antibody tests (AGA IgA and AGA IgG) do not test for villi damage being attempted by the body like the tTG, DGP, and EMA tests do. The AGA tests for gliadin (gluten) intolerance and is thought by some doctors to work for both celiac disease and NCGI, although this is not widely accepted (yet). Perhaps the new GI meant that a positive AGA...
  14. nvsmom
    I've been seeing a specialist (orthomolecular doctor) who is a bit obsessive about celiac testing. He's not the most educated when it comes to celiac disease (he has never heard of the DGP tests and keeps calling EMA IgA old fashioned for some reason) and he doesn't believe me when I tell him I have been well over 99% gluten-free for over a year but after...
  15. nvsmom
    As long as the doctor realizes that "old test" doesn't always mean "bad test" then he'll probably set you up right. You might want to get copies of all tests that get done just so you can do your own research and come to your own educated conclusions... not all doctors are created equal, and there is always a chance that you've got a dud. LOL KWIM is...
  16. nvsmom
    Many around here saw food intolerances resolve after time (months to years) on the gluten-free diet. I can only guess that celiac disease did a number on their immune systems and GI tract and they were only able to reintroduce the foods once they were healed. You have a lot to work around, I hope it gets better for you. Best wishes.
  17. nvsmom
    I had to go in search of "alternative" doctors who were willing to prescribe natural dessicated thyroid before I found a doctor who "gets it". My current TSH is 0.01 (range is 0.20-6.00) and my free T3 is 5.6 (range 3.5-6.5) and I feel the best I have in years in spite of the fact that my TSH would freak out most doctors. My family doctor said I was normal...
  18. nvsmom
    You might as well test him before removing gluten because if you want to test in the future, he will have to do a gluten challenge of about two months... Better to do it now. The DGP IgA and DGP IgG are considered to be very good tests for young children. The other tests are tTG IgA and tTG IgG, EMA IgA, total serum IgA, and AGA IgA and AGA IgG (older...
  19. nvsmom
    Ditto Arlene. A positive is usually a positive for celiac disease. TTG IgA can occasionally (about 5% of the time) be caused by diabetes, chronic liver disease, crohn's or colitis, and thyroiditis. If none of those apply to you, it is most likely celiac disease. With a positive IgA reaction to gluten as well as an allergic (IgE) reaction to wheat, your...
  20. nvsmom
    Yes. Some people have problems with more than just the sugar (lactose) in milk. Some have issues with the casein (protein) too and possibly the whey. My son's behaviour is affected by milk. He is much calmer and more focused when he is dairy free, and by dairy free I mean zero dairy in anything. Dairy may not be the cause of all of your problems, but...
  21. nvsmom
    If you are still having occassional dairy in your coffee, and lactose free milk, that's not dropping dairy. I would consider that dairy-lite. Try going 100% dairy free including dairy in baked goods and in junk foods like nachos as well. It couldn't hurt to tighten it up a bit.
  22. nvsmom
    We use Wrap-N-Mats. Open Original Shared Link It's basically a napkins but one side is spill proof and they have some nice designs. maybe include a little wet wipe in the lunch too so crummy fingers (or tables) can be wiped ahead of time.
  23. nvsmom
    Be careful about discounting celiac tests unless he finds something else that could account for positive results. I would hate for you to suffer more years of discomfort just because the "stars and moons" didn't perfectly align for a clear cut diagnosis. KWIM? Good luck.
  24. nvsmom
    I would let them know ahead of time if you can. They might be able to accomodate you somewhat that way.
  25. nvsmom
    I didn't start to feel really well, besides some intestinal improvements, until I was 6 months gluten-free; in fact (for a while) I felt worse after a few months gluten-free. I am now over one year gluten-free and I still have symptoms that my hubby has never experienced although they are less severe than they used to be. It's not an overnight fix. If...
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