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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Ah! That one actually IS a celiac disease test. That's the tTG IgA test... I've never seen a zero in that either. LOL So you have had one celiac disease test, and you passed it. It is very very low so it would be a good idea to check your total serum IgA to see if that affected it, as a low total serum IgA will cause falsely low IgA based tests. Knowing...
  2. nvsmom
    I probably could try and elimination diet... I'm just loath to do so. I feel like I've given up enough. LOL I have been gluten-free for 2 years, dairy-free for a year and a half (although I have switched to dairy light now that dairy is no longer painful to eat). I am very soy-light (I don't eat a lot of prepackaged foods), and eat less nightshades than...
  3. nvsmom
    I use Vega One for smoothies and add it into all my baking. It's vegan and gluten-free, and sweetened with stevia so it is one of the better ones. I'm in Canada so I don't know if it is in the States though.
  4. nvsmom
    0? Huh. I've never seen an IgA of zero. That's beyond deficient and into non-existant.... If your IgA levels are that low, definitely skip all IgA based tests (tTG IgA, DGP IgA, EMA IgA, AGA IgA) and request only IgG based tests (tTG IgG, DGP IgG, etc.). I would be willing to bet that there are IgG based celiac disease testing options available to you...
  5. nvsmom
    Welcome to the boards. Your story sounds SO much like mine. I never had D but instead had constant C, and the way you describe the bloating and pain sounds almost identical to what I experienced for years prior to dignososis. I remember being on vacation at a beach and rejoicing because I was finally able to go to the bathroom after well over a week...
  6. nvsmom
    The IgA and IgG are not celiac disease tests, they are just tests to measure the immunoglobulin (Ig) levels in different parts of the immune system. Low (total serum) IgA levels can be found in about 5% of all celiacs (which is more than the regular population.... Just having low levels of IgA is suspicious enough to sugest the possibility of celiac disease...
  7. nvsmom
    Just remember that your small intestines do not actually feel pain. The discomfort you are feeling is not a direct correlation to the damage in your intestines. I believe it is that inflammation that is affecting other parts of your gut. Your villi are damaged but they will start to heal once the autoantibody levels in your body die down after being gluten...
  8. nvsmom
    Many of us eat out less now. It is just more practical to gather to do other things instead. When I do go out to eat at someone's house, I always bring food and snacks just to be safe. I find going out requires more effort than it used to but it is so much better than feeling sick. Hang in there. And welcome to the boards.
  9. nvsmom
    I feel like a senior with arthritis today. I scrimmaged with the under 12 boys soccer team I coach for 15 minutes on Thursday and I have been hobbling for the last 24 hours. I really need to get bak into shape and gentle is probably the place to start. Thanks.
  10. nvsmom
    Enjoy a cinnamon bun for me. All you need is the equivalent of 1-2 slices of bread per day, so you don't need to be excessive and make yourself too sick before getting tested. If I was you, I would pick my favourites and eat those items until the biopsy... and enjoy the eating out without worrying about being glutened. Welcome to the board...
  11. nvsmom
    Hi DLL. Welcome to the board. Your joint issues sound a lot like mine. My first bout of joint pain was a big one, back when I was around 20 or so. That was the only time I ever had hot swollen joints (that aren't from a sports injury) along with the crazy swelling and a positive ANA. It only lasted a few months and I remember being so overjoyed when it...
  12. nvsmom
    A positive EMA IgA is caused by celiac disease 99-100% of the time. If you combine that with a positive tTG IgA, then a celiac diagnosis is a sure thing. This report (page 12) has info on the tests and shows that the specificity (what percentage of positive results are caused by celiac disease) of the tests you had is quite high. Open Original Shared...
  13. nvsmom
    Those are the best tests to be run. I was concerned that the doctor had just run total serum IgG and IgA - some have done that. If a test is going to catch celiac disease, those are the ones. You appear to be one of the few seronegative celiacs. Perhaps try keeping a food and symptom journal to help you keep track of how the gluten-free diet is...
  14. nvsmom
    It looks like you are eating pretty well. If you are worried about nutrients, a good multivitamin can help somewhat, but you look like you are eating very well so I doubt you need vitamins unless some nutrients were low to begin with.
  15. nvsmom
    Ooops. We posted at the same time. These are the celiac tests that can be done: tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA AGA IgA and AGA IgG (older and less reliable tests) total serum IgA (a control test only) Do you you know which of those tests were done?
  16. nvsmom
    Welcome to the board. Symptoms (how you feel) have a very low correlation to the damage being done inside of your body. Consider a flu virus, one person may get a fever for a week, coughes, migraines and aches, and then another person with the same virus may be just a bit fatigued for a day and sneeze a few times - same virus but different symptoms. The...
  17. nvsmom
    Was it the DGP IgG that you had a positive result with? that is testing for antibodies to the deaminated gliadin peptides (a gluten protein) which is not an antibody to blood. There are antibodies to blood, I had ITP and my body killed off my platelets so I could not clot and hae very heavy blood loss during menstration, also to the point of needing...
  18. nvsmom
    Welcome to the board. Like the others said, a biopsy is good to let you know what point your recovery is starting from and to check for other problems (in two years on this forum i have NEVER seen someone mention another problem causing a positive blood test that was identified in a biopsy). Others find a biopsy useful if their blood work was not clear...
  19. nvsmom
    There are very few people around here who had their celiac disease caught the first time they went to the doctor about it. I think hypochondriac is synonymous with celiac disease. I'm sorry your doctor was so misinformed. If a diagnosis is important to you, and you can handle 2-3 months (12 weeks is best) of gluten, then I say go for it. If it's too...
  20. nvsmom
    Glad things are finally moving for you! Hope you are feeling better today.
  21. nvsmom
    Welcome to the board. I can't comment on the labs much because different labs have different normal ranges. Some are from 0-20, some are 0-3 or 4, and others are just up to 1. You definitely have at least one positive test result; your tTG IgG is at least double the normal limit and possibly as much as over 10 times the normal limit.... That is probably...
  22. nvsmom
    Darn spring time flus! Feel better. I forgot to mention that I had a bone density scan about a year ago and it was great - above average.
  23. nvsmom
    You'll get there. We all made mistakes at first. Everybody does. Some of us have cried at the grocery store, others avoided eating out, other had such poor health at diagnosis that they rejoiced when they had an answer. There's no right or wrong way to adjust to this diet. If you are worried that you are still getting gluten, the DGP tests are the best...
  24. nvsmom
    You were hit with the 1-2 punch of celiac disease and lupus. I was pretty convinced that I had lupus shortly after diagnosis. After being gluten-free a few months I was hit with a pretty hard flare-up that finally got me into a rheumy. I had many symptoms like a facial rash (could be roseacea), mouth sores (I have some now too - hmph), joint pain, past positive...
  25. nvsmom
    I did have a minor cold a few weeks ago, the type that I used to associate with a flare-up - I think you are right in that something in my immune system is flaring-up and the steroids were probably masking it... I'd really hoped that it was gone after being gluten-free so long. This is a bit disappointing. Thanks Colleen.
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