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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Are you eating Chex with milk? About 50% of celiacs are lactose intolerant at diagnosis because our villi which make the lactase that digests the milk sugars (lactose),and if our villi is damaged, it just can't make enough lactase to handle milk. Fortunately most celiacs regain the ability to handle milk after about 6 months gluten-free. I would advise...
  2. nvsmom
    I think that "less sensitive" just means that the symptoms are not as extreme as someone "more sensitive". They just aren't feeling the reaction in the same way. It is sort of like how one person experiences a virus in a different way than others would. If person A only gets the sniffles and a mild cough with a virus and person B gets a fever and ends...
  3. nvsmom
    ((HUGS)) Yeah. It was a bit tough at first. I splurged on gluten-free treat foods for a while just to make myself feel better, like I wasn't missing anything. I still do miss the convenience of gluten-free foods for my children. Like many kids, they are picky eaters so we rarely ever eat out because they would not be happy with a salad, or a chunk...
  4. nvsmom
    It looks like the X77W9 test tested for most of the celia tests, but to me it looks like it might have just been the IgA based ones (tTG IgA, EMA IgA, etc). They missed the new DGP tests but added the old anti-reticulin test - that one isn't seen often anymore. If possible, it could be helpfulto have the IgG version of those tests run. A minority of...
  5. nvsmom
    A DGP IgA most likely points to celiac disease, and since your symptoms are improving after only 40 days on the gluten-free diet, I would guess with confidence that you have celiac disease. Keep in mind that there is a very very small minority of celiacs that were negative on the genetic tests but still had a positive celiac test. It's unusual, but it...
  6. nvsmom
    I did the Biocard test and had a very very weak positive after upping my gluten intake for two weeks. I took my test to the doctor and he ordered labs for me. I continued to eat gluten heavy and had the equivalent lab run test (tTG IgA) and had a positive that was well over 10X the normal. For either test, I would advise adding gluten back into your diet...
  7. nvsmom
    Awesome! Congratulations!!
  8. nvsmom
    My symptoms tended to wax and wane over the decades BUT when one symptom improved, others got worse. For example, My stomach issues were not that bad in my late teens and early twenties - better than they were as a child and in my thirties - but other things went wrong. My tummy didn't hurt but I developed ITP (linked to celiac disease) and it nearly killed...
  9. nvsmom

    ARCHIVED Back Up Food

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

    Hard boiled eggs or extra scarmbled eggs from breakfast, pepperoni sticks, half an avocado,trail mix and Lara bars are my go too snacks. If I'm organized I'll make myself a smoothie in the morning, but that requires effort.... Some mornings I just don't "do" effort.
  10. nvsmom
    About 5% of celiacs are deficient in IgA, which is higher than the regular population, so there is a 5% chance of an IgA deficiency causing a false negative... but false negatives can happen even when a person is not deficient in IgA, as you saw with your 5 year old. Most doctors recognize that a full panel should be run for at risk individuals - meaning...
  11. nvsmom
    I believe there are a few members that found abnormal "white spots" on their MRI due to ataxia. I think their doctors thought it could be ms but it proved to be celiac disease damage. I don't know much about this area but I would not be surprised if it was celiac disease related. I think it is smart of you to check into it fully though. Hopefully someone...
  12. nvsmom
    I believe a biopsy is squally needed in order for damage to be detected. There are celiacs who have damage to the naked eye, but I believe that they are the minority. Hopefully someone else who knows more about the endoscopy will chime in. Bet wishes.
  13. nvsmom
    It's possible to have a negative biopsy and still have celiac disease; I would even say it's not uncommon. The EMA IgA is about 98% specific to celiac disease, and the tTG IgA is about 95% specific to celiac disease - combined, that's pretty much a sure thing. I was positive in those two tests and my doctor did not insist on a biopsy because he was sure it...
  14. nvsmom
    It's also possible that you have non-celiac gluten intolerance (NCGI) which causes all the same symptoms as celiac disease minus the damaged intestinal villi and possible DH rash. If you do test, and your results are negative, try the gluten-free diet anyway as you definitely appear to have a problem with gluten. Unfortunately at this time, there are no reliable...
  15. nvsmom
    Almost every celiac will have a negative blood panel after being gluten-free for a time. Some of us take longer than others for our blood tests to get back to normal but it almost always gets there. I, for instance, took over half a year to get to normal but others are there within a month of going gluten-free and others are negative (even while eating gluten...
  16. nvsmom
    Definitely not fair.
  17. nvsmom
    Daura's beer did that to me in the first few months. It claimed it was gluten-free but it was started with barley and I didn't clue in until after the pain started.
  18. nvsmom
    Yikes! Don't do it. It's almost like saying "I got hit in the head with a bat in the past, and it messed me up, but I haven't been hit lately and I've forgotten what it feels like..." I know that is a huge exaggeration but it's along the same lines. Don't mess with a good thing. Best wishes.
  19. nvsmom
    Oh no. Best wishes to her.
  20. nvsmom
    I don't believe those are celiac disease tests. :(That's just to measure levels of immunoglobulin A and G, unless they say antitissue transglutiminase or deaminated gliadin peptides or endomysial antibodies or anti-gliadin antibodies along with it. The IgA is considered to be a control test. About 5% of celiacs do not make enough IgA for the IgA based...
  21. nvsmom
    I'm sorry to hear you are still not well. I had the opposite problem as you, and it really only improved until my hypothyroidism was being treated properly - about 10 months gluten-free I think. Could it be other issues other than the celiac disease (I'm assuming you are strictly gluten-free)? some other related problem? I hope you find answers...
  22. nvsmom
    LOL Hope you feel well soon!
  23. nvsmom
    Welcome to the board. Most specialists agree that a gluten challenge of 8-12 weeks (the longer the better), while eating the equivalent of 1-2 slices of bread per day, is best for accurate celiac disease testing. Some people's antibodies seem to go down to normal levels within weeks while others take years; also, some people have higher test results...
  24. nvsmom
    Sorry that you've been unwell. My stomach pain was usually fairly sharp and in the upper part of my belly - well above the belly button but below the ribs. Combined with the bloating, it was sometimes difficult to stand up straight so I spent a lot of time "casually" leaning over counters and chairs to hide my discomfort. My symptoms did come...
  25. nvsmom
    I agree that a positive is a positive. Think of it like pregnancy testing - for some people those double lines are very faint, but they still mean the same thing.. And I would not call your tTG IgA result a weak positive. You are about triple the normal upper limit; a non-celiac would have a result of 1, not 9. KWIM? The deaminated gliadin peptide...
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