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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Welcome to the board. Celiac disease is an autoimmune disease that dmages the villi of your small intestines and causes many many symptoms, some are gastrointestinal, and others are not. If you avoid all gluten (barley, rye, wheat) then symptoms will reverse and your intestine will heal. If your doctor wants you to do more tests, don't stop eating gluten...
  2. nvsmom
    If you need a proper diagnosis for some reason (for accommodations or even if it is just to make it mentally easier for you to stick to the gluten-free diet for the rest of your life) then you should continue eating gluten immediately and continue until testing is done. If you just want to feel better now and get started on the gluten-free diet, then you...
  3. nvsmom
    (Hugs) Hang in there. If for some reason the scope is negative in spite of the positive EMA IgA and tTG IgA tests, I recommend you stick with the gluten-free plan. It does happen on occasion that damage in the intestines is missed (the surface area is that of a tennis court!) but an EMA is 98-100% specific to celiac disease (meaning out of 100 positive...
  4. nvsmom
    My kids all tested negative in the tTG IgA test in spite of the fact that 2/3 of them had some obvious symptoms of celiac or NCGI. Since that was the only test my GP would do, I made our household gluten-free and lo and behold the kids got better. What a "coincidence" eh? LOL My doctor advised not making them gluten-free but it doesn't hurt them in any,...
  5. nvsmom
    I think your doc should retake his exams too! I hope you can find out what tests were done. If a variety of tests were done, then chances are it was a reliable negative but if it was just one test, then there is a chance that it is a false negative - it could be as high as 30% chance of being negative. Oh yes, I've heard about that. In Canada we can get...
  6. nvsmom
    It doesn't sound like withdrawal to me because you are weeks into the diet, it usually hits in the first week but who know, you could be the exception. I hope you feel better soon.
  7. nvsmom
    Ditto. There is no guarantee you are infertile due to celiac disease. I had 4 pregnancies after having celiac disease 28 years.... And I became pg veeerrrry easily. The pill can occassionally be trouble for some people who have autoimmune problems (like celiac disease). I don't blame you for wanting to skip it. I never felt my best on the pill and I coincidentally...
  8. nvsmom
    I know next to nothing about the genetic tests so I can't comment on those. There are many around here who do know about that and I'm sure they'll give great advice. I do know about celiac testing though and your daughter was not given a full panel. I think she only had one out of seven possible celiac tests done along with the control serum IgA test...
  9. nvsmom
    I think you are right that the only celiac test they ran was the tTG IgA. That is pretty common; my city only runs the tTG IgA and then if that is positive they run the EMA IgA. The IgA test they ran was the total serum IgA which is a control test to make sure the patient makes enough IgA for a valid tTG IgA test - about 5% of celiacs are deficient...
  10. nvsmom
    I recently went to an orthomolecular doctor who was amazingly thorough, and it was he who ordered these tests. My family doctor is pretty sub-par but I hold onto him because he's easy to get in to see when my kids are sick. I have to fight for tests with him too. This orthomolecular doctor ordered 44 tests! He was almost freakishly thourough. LOL Those...
  11. nvsmom
    Hypothyroidism commonly is diagnosed around perimenopause or menopause for women. I'm not sure if that's because it is when it appears or because hypothyoidism makes perimenopause such a miserable time. LOL If you get a doctor to run thyroid tests, these are the tests I recommend: TSH - should be near a 1 free T4 and free T3 - should be in the 50-...
  12. nvsmom
    I figured out the celiac for myself, and then did a home Biocard tTG IgA test that confirmed it... Then I went to the doctor and told him I had celiac disease. He retested me for his own proof, and I requested thyroid testing because I knew it was linked. My TSH was high. So, I had my celiac disease and hypothyroidism diagnosed at about the same time. ...
  13. nvsmom
    I think it will be a bit tough to find success stories around here because most of us are here for support because we are still healing. I'm guessing those who are well don't need us as much....which is good. I'm a happy recovery story in progress. i was diagnosed a year ago. Actually, I self diagnosed a year ago and took a home Biocard tTG IgA test...
  14. nvsmom
    My doctor orders those checked through the city's medical labs. It should be covered by health care.
  15. nvsmom
    Mine grew back in after 2 months gluten-free but I have had a couple of episodes of shedding over the past year that are linked to hypothyroidism or some other autoimmune issue. One bout was quite extreme, and I'm getting another bout now which I attribute to changing thyroid meds. I hope it stops for you soon.
  16. nvsmom
    I'm a "C" er too - my whole life but it took getting treatment for my hypothyroidism to actually get things moving. C is a big hypo symptom. I was the same as Lisa (Gottaski), I had no idea that I was abnormal and was actually a bit annoyed when things normalized for me because I had to "go" everyday... how inconvenient! LOL
  17. nvsmom
    Ditto Gemini. False positive tTG's are usually barely above the normal range, and almost borderline. For example, if the upper normal limit was 20, I would consider it borderline if it was a 22. Did they run any other tests? The EMA is similar to tTG but is positive for extensive damage. The DGP tests are considered to be very good tests for kids......
  18. nvsmom
    ((HUGS)) Mommida.
  19. nvsmom
    Hi Mommida. That doesn't sound like ITP to me, but I am not a medical expert in anyway. When I had ITP, it caused me to not clot well. A minor bruise from walking into a coffee table that would normally be a square inch would instead be several inches across. My periods became horrendously heavy and long. Just before I was diagnosed my bleeding lasted...
  20. nvsmom
    I don't know much of anything about interpretting your endo report. I do know that we Canadians have a right to get copies of our labs (and the doctors have a right to charge us a small fee for them ) so I would assume that would apply to a path report too... I'm just assuming. If Karen and Gemini both think there's more to it, then there probably is...
  21. nvsmom
    I just renewed my life insurance last week. When I first got it, 10 years ago, we didn't know I was a celiac. we were able to renew it, no problem, without a medical even though they knew I was a celiac and hypothyroid. Oh, and when I initally got my life insurance policy, they knew that I had had ITP (an autoimmune clotting disorder with similar bleeding...
  22. nvsmom
    It could be her body's version of a withdrawal (just my guess). Withdrawal usually hits a few days into gluten-free and it can make you feel pretty ill. It could also be her body's reaction to the procedure. Those sedative and the actual endoscopy might have felt very foreign to her body and perhaps it's reacting - just another guess though. I hope...
  23. nvsmom
    That is a weird one, Arlene. I'm glad you figured it out though! No, I'm not taking Tylenol. I take Ibuprofen when I nedd a pain killer. I took one last night because i couldn't settle down - the discomfort was making me restless - but that's the firts pain killer I have taken in a few weeks. Thanks for the tip though! I appreciate it.
  24. nvsmom
    LOL
  25. nvsmom
    That is a good list, but I laughed because my only symptoms were stomach pain and bloat, C, and fatigue... No wonder I had to diagnose myself before the doctor agreed. Lol The link for 300 symptoms was on the page that P of PT gave you. Open Original Shared Link
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