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nvsmom

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Everything posted by nvsmom

  1. nvsmom

    ARCHIVED Crap

    nvsmom replied to pricklypear1971's topic in Coping with Celiac Disease

    (hugs) Hope you feel a bit better by the weekend.
  2. nvsmom
    Yep. I recently had a doctor tesll me celiac wasn't an autoimmune disease either, and then he gave me a pamphlet that discussed how eating papaya digestive aids would allow people to eat gluten again.... Uh huh. Riiiiiiight.
  3. nvsmom
    Yes and yes. There are board members here who don't have either of the 2 most common genes... can't remember who though. NCGI appears to affect nutrients levels - I'm guessing it has something to do with the inflammation it causes.
  4. nvsmom
    That's a good point, Paul. I hadn't thought of that.... But I sort of doubt the vitamins are causing it because I stopped taking my vitamins on Friday or Saturday in preparation for blood tests that I had yesterday (Tuesday). I've already been vitamin free for 5 or 6 days now, and I am on day 3 of flank pain. I think I will skip my new vitamins for a few...
  5. nvsmom
    I too had a thyroid that measured "normal" but not quite ideal (a TSH of 2.5-6.5) for 15 years. Finally, a year ago, my TSH went into the teens and they believed me. I can honestly say that a TSH of 3 felt NO different than a TSH of 14 for me. My TSH put me at sub-clinical but my Free T3 and Free T4 were at the very bottom of the normal range. After one year...
  6. nvsmom
    Welcome to the boards. It sounds like you do have some symptoms like cognitive problems and anxiety - both really common symptoms. Fatigue and weight loss are more common symptoms. I bet you are also low in some vitamins,which P of P listed above, and that can affect your quality of life. I wouldn't be surprised if you have some other symptoms like headaches...
  7. nvsmom
    I started looking into celiac disease because my son was complaining of stomach aches and headaches and I didn't want him to have issues his whole life like I did. A good friend pointed out that I should get tested too. One year later we are all gluten-free and feeling quite a bit better BUT we did not all have positive tests so I think it's a good idea to...
  8. nvsmom
    A weak positive tTG IgA usually means celiac but your symptoms of thinning hair, memory and cognitive problems, anxiety, swollen glands, puffy face and eyes, and headaches are also symptoms of hypothyroidism....outer edges of eyebrows thinning out is CLASSIC hypothyroid symptom. You might want to ask your GP about thyroid testing. Good thyroid tests are:...
  9. nvsmom
    I feel for you on the thyroid thing. I was borderline high for 15 years but I wasn't educated enough to realize that I shouldn't trust my doc on that. My TSH finally went high enough that they treated me, but to be honest, my TSH of 14 felt no different than my TSH of 2 or 4 did (when they said I was normal). I finally switched to another doctor who "believed...
  10. nvsmom
    I wondered about that too but my pain seems to be in a different spot than the typical gallbladder pain. It's something to keep in mind. Thanks. Yep, you sounded serious. I know kidney infections and stones can be wickedly painful, but my discomfort is more along the lines of annoying and distracting so I'm not sure if it's kidney related or not...
  11. nvsmom
    This is probably not celiac linked but I thought I'd ask anyway since you all know your medical stuff. TMI ahead... For a couple of days I have had pain in my right flank. It is mostly on my back, to the right of my spine, below my ribs but above my hips, and the pain occassionally radiates around my side towards the front. I'm trying to figure out what...
  12. nvsmom
    Ditto everything Cara said: We would need the normal reference ranges of the labs to comment. For example, my lab's tTG IgA range was 0-20 but there are many that are 0-5... at a 15 you could be 3 times the upper limit or still within normal range. And I agree that 1 week on gluten is not enough for a gluten challenge; if you have a positive result after...
  13. nvsmom
    I recommend bringing a paper and pen - I find it helps me to write it down. Request lab copies too. Good luck!
  14. nvsmom
    You could order more tests if you feel the other tests might reveal more. Really, you only have one test there (DGP IgG) that you can be sure of because a total serum IgA test (a control test) was not done so you can't be sure that you are not one of the 5% of celiacs who is deficient in IgA - and whose tests using IgA would all be (falsely) negative. The...
  15. nvsmom
    Congats!!!!
  16. nvsmom
    That just sounds like a probiotic to me but I am not very well versed in this area. I take a Creon which is a digestive enzyme. A prescription was needed to get it. I'm sure others will help. There are some around here who know this stuff well.
  17. nvsmom
    Welcome to the board. I don't have APS, but I do have ITP which is another autoimmune disease that is essentially the opposite of APS - it causes you not to clot so bleeding is a problem. As Karen said, AI diseases tend to run in clumps. If you have one AI disease, you are more likely to get another.... Unfortunately. Good luck with your testing. This...
  18. nvsmom
    Welcome to the board. Have you had all of the celiac blood tests yet? The full panel is: tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA Total serum IgA (a control test) AGA IgA and AGA IgG The AGA tests are the only tests that are thought to show Non-Celiac Gluten Intolerance (NCGI) but it is not a widely accepted view. The other tests...
  19. nvsmom
    Celiac disease is the most common cause of a positive tTG test. I believe a positive tTG is from celiac over 90% of the time. The other causes are often infection (like a serious bout of e.coli) or diseases like diabetes, crohn's, thyroiditis, or liver disease...usually it is celiac disease though. I am not sure if there are any other possible causes or...
  20. nvsmom
    I developed ITP 20 years ago. It was a fast and serious case. My platelets were down to 2K and my hemoglobin was at 80. I also had a positive Coombs test so I suspect I might have had hemolytic amenia too. I was treated with prednisone which helped only marginally. They then put me on a few rounds of gamma globulin which got my counts up out of the danger...
  21. nvsmom
    L-Glutaminase is a supplement that helps repair muscle tissue and as such, it helps repair the small intestine. It might be something to look into.
  22. nvsmom
    My mood felt worse (withdrawal) before it felt better. Days 4-20 were my worst. Hang in there if it doesn't get better this month.
  23. nvsmom
    Yes, to have an infant show a positive tTG test is very unusual. Those tests show damage to the intestines and most infants haven't been alive long enough to make enough damage and antibodies to show on a test. Her result isn't super high (some go up into the hundreds) but it's not low either; I would rank it as typical... for an adult celiac. The GI...
  24. nvsmom
    The tTG tests do not test for gluten sensitivity, they test for damage caused to the gut because some autoantibodies attacked the tissue transglutaminase enzymes found on the surface of the intestines. If you have a positive tTG test, it means damage has been done to the intestines - usually it is caused by celiac disease but it can be caused by other diseases...
  25. nvsmom
    Tests don't always stay negative, and celiac testing is notorious for false negatives in toddlers. I would get her retested. Those symptoms are all pretty classic symptoms of celiac in a child. The full celiac panel is; tTG IgA and tTG IgG EMA IgA (often negative in kids as it indicates advanced villi damage) DGP IgA and DGP IgG (a great test for kids...
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