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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Welcome to the board! It sounds like you are on the right track now. I hope you have a speedy recovery and are well on your way to healing by time the summer winds down. Best wishes.
  2. nvsmom

    ARCHIVED Lost

    nvsmom replied to beth01's topic in Coping with Celiac Disease

    My guess is your thyroid isn't treated well enough yet. Having low free T3 can throw a body off. Which antibody tests were abnormal? Was it the tissue transglutaminase? Hashimoto's can elevate that results of that test. I know I was still testing abnormal, and not feeling great, at 9 months gluten-free, but by 3 years gluten-free my tests were all...
  3. nvsmom
    Yes, all you can do is give it time and try to avoid making any cc errors in the future. Generally one with non-celiac gluten sensitivity (NCGS) will not develop celiac disease. When one with NCGS develops celiac disease, it is thought that they had celiac disease earlier but it was too early in the disease to be detected. The only way to know is to...
  4. nvsmom
    I'm afraid that I agree with the others. Celiac does not always have obvious symptoms and you may be doing permanent damage to your body like osteoporosis, arthritis, hair loss, pain, anemia, deficiencies, ataxia, other autoimmune diseases, and neuropathies.... which could all happen by age 30. I too was undiagnosed through my childhood, but by age...
  5. nvsmom
    I agree. Three weeks isn't long enough of a gluten challenge, 2-3 months is usually needed for reliable blood tests. You can cut back on your gluten though. Most doctors recommend 1/2 to 4 slices of bread per day, or equivalent (like muffin, noodles, cookie, etc), with 1-2 slices per day being the norm. Try to eat your gluten later in the day to help reduce...
  6. nvsmom
    The stomach pain is often the symptom that resolves fastest. I to get fatigued, cranky, achy, migraines, constipated, bloated, and I swear my IQ drops, but that could be the fatigue. I even lose hair. There are over 300 symptoms of celiac disease... It's amazing how the symptoms can manifest! Open Original Shared Link
  7. nvsmom
    The rates for false positives in those tests can be as high as 25% for the tTG IgA, and 60% for the tTG IgG. Conversely, the tTG IGA has a sensitivity between 75 and 95%, so it does catch most celiacs, but not all. The tTG IgG is not nearly as sensitive. This is where I got my info: tTG IgA info on pages 10-12: Open Original Shared Link tTG IgG...
  8. nvsmom
    I agree. I lot of scary headlines there that don't have much behind them. Some of them may be true but I think many were taken out of context. It can take a few years to heal from celiac disease. Going gluten-free isn't like avoiding an allergen - it isn't a quick fix. Stick it out for the long run and you will get better. No, you may not get back...
  9. nvsmom
    Ah. LOL So that means that she is negative in only one test. It really is not uncommon for a celiac to be negative in some tests yet positive in others, especially if they are in the early years of the disease, which your daughter would be if she has celiac disease. If you suspect celiac disease, there are still four to six blood tests she could have...
  10. nvsmom
    Thanks. I don't think I've ever seen that brand up here (Alberta, Canada) but I'll keep my eyes open. Any others that someone knows of?
  11. nvsmom
    Welcome to the board. It appears that your daughter's tTG IGA (tissue transglutaminase immunoglobulin A) was positive for celiac disease. If the normal reference range is 0-2 for that lab, then her result of 4 was double the normal range. That's a pretty significant positive result and probably indicates celiac disease.... I don't know what her...
  12. nvsmom
    After that recent discovery (by Green) that some probiotics contain gluten, even when claiming to be gluten-free, I was wondering if anyone had found the "safe" list or contaminated list of probiotics? I keep seeing that a good chunk of them have gluten but I never see WHICH probiotics to avoid.
  13. nvsmom
    He ran the best tests, which is good - some doctors only run one test. As cyclinglady said, you could retest in 3 months after eating more gluten (1/1 to 4 slices of bread per day). You could have the biopsy done after 2-4 weeks of gluten, or you could go 100% gluten-free and skip all future testing. Going gluten-free now is helpful if you have non-celiac...
  14. nvsmom
    Yes, 0-72 hours is the norm for a reaction to start, which can make it really tough to pin down the food that caused it! I usually get a stomach ache and bloating when I get glutened, but not always. Sometimes I just get the fatigue a couple of days later or my joints start hurting, so I can be slow to realize that I was even glutened. Best wishes...
  15. nvsmom
  16. nvsmom
    Most celiacs appear to have normal test results after 6 months gluten-free. Some take a year or so, but they are the minority.
  17. nvsmom
    Yes, I agree with Kareng - your doctor is a bit of a doorknob. He only gave you one celiac disease test (ttG IgA - tissue transglutaminase) and that test can miss up to a quarter of all celiacs WHEN they have been eating gluten in the 3 months prior to testing. He is correct that the tTG IgA can stay elevated for a couple of years but that is in a...
  18. nvsmom
    I chickened out and never tried it again after going gluten-free. Part of the reason for that is that I don't always have severe reactions to gluten and my symptoms' severity sneaks up on me. I slowly feel worse and worse until it takes quite a while to recover. It's not worth the risk in my mind, but that's just me. Many celiacs do just fine with oatmeal...
  19. nvsmom
    Welcome to the board. You probably do have celiac disease as indicated by the positive tTG IgG and almost positive AGA IgG (anti-gliadin antibodies); and it is possible that your gluten light diet affected the results. About 5% of positive tTG tests are caused by other health problems like T1 diabetes, crogn's, colitis, liver disease, thyroiditis,...
  20. nvsmom
    Doctors estimate that about 97% of celiacs have the DQ2 or DQ8 genes, which means about 3% do not. It appears to be possible to have celiac disease without those genes, but it is very uncommon. Was your only test the tTG IgG? I ask because it is not a very sensitive test for celiac disease. Its sensitivity is about 40%; it can miss 60% of all celiacs...
  21. nvsmom
    I too would do more testing. Do the tTG IGG, DGP IGG, and you might as well do the DGP IgA to cover all bases. You may want to consider the biopsy too. The ttG IGA can have a sensitivity as low as 40%, which means it could miss 60% of celiacs. The DGP IgG test is better with a sensitivity between 70 and 95%, but it can still miss over a quarter of...
  22. nvsmom
    Glad you know for sure! I hope your recovery is short. Best wishes.
  23. nvsmom
    That biopsy sounds like something is up. Marsh 1 can be a sign of early celiac disease so it is probably wise to go gluten-free as you are doing. I hope you feel better soon!
  24. nvsmom
    The gluten challenge is usually the same for adults and children: 8-12 weeks for the blood tests and 2-4 weeks for the biopsy. The recommended amount of gluten per day is 1/2 to 4 slices of bread per day with 1-2 slices of bread (or equivalent). Withe such a small one, I'm sure the smaller amounts would be enough. The genetic tests (DQ2 and DQ8) are...
  25. nvsmom
    Chapman's has gluten-free and nut-free ice creams, and really nice sorberts for those with lactose issues. We usually buy them because of nut allergies, and most ice creams run the risk of nut cc.
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