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nvsmom

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nvsmom last won the day on May 5 2019

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About Me

ITP 1992

Celiac 2012

Hashimoto's 2012

Prediabetic 2014

"Acceptance is the Key to Happiness." Best fortune cookie ever!

  1. icon radley reacted to a post in a topic: Celiac Or Something Else? Some Things Got Worse After Going gluten-free
  2. icon radley reacted to a post in a topic: Celiac Or Something Else? Some Things Got Worse After Going gluten-free
  3. nvsmom
    My kids did not have a positive blood test but I am a celiac and they had symptoms so they are now all gluten-free. Symptoms included stomach aches, diarrhea, headaches, moodiness and lack of concentration.
  4. nvsmom
    Those can be symptoms of celiac disease. No doubt about that. The numbness is neuropathy, which occurs in some celiacs and can often be slow to improve. Anxiety is a common symptom, as is fatty stools and fatigue. Even the mri lesions are sometimes seen in celiacs. I wouldn't be surprised if you do have celiac disease but unfortunately you are right, you...
  5. nvsmom
    Sounds like an interesting idea. I hope they develop it.
  6. nvsmom
    I have had elevated ANA in the past and then other times it is negative. No idea why. ANA is a titre test so that might explain the +. A normal ANA is 1:10, 1:20, 1:40 and sometimes 1:80. The 1:80 is positive in some labs and negative in other; that may be the + test result. 1:160 and 1:320 are positive too. 1:640 or 1:1280 are quite high. a positive...
  7. nvsmom
    Double check which celiac tests were done. Because you are IgA deficient (5% of celiacs are) all of your IgA based celiac tests (tTG IgA etc) will probably be negative even if you are a celiac. The tests you need are the tTG IgG, DGP IgG, EMA IgG and maybe the older AGA IgG. Good luck!
  8. nvsmom
    My first symptoms started in early childhood. Some symptoms waxed and waned and some just got worse once they developed. My guess for me is about 38 years to diagnosis? Doctors are getting better at diagnosing it sooner. There is something to be said for having a "trendy" disease. JK
  9. nvsmom
    They may be mild symptoms, but those are symptoms of celiac disease. In fact, anemia is now thought to be the most common symptom of celiac disease. There are 300 symptoms of celiac disease: Open Original Shared Link Anxiety and cognitive issues are some of the slower symptoms to respond to a gluten-free diet. That's great if you've had improvements...
  10. nvsmom
    Ditto. That's a low IgA, more commonly found among celiacs, so make sure the doctor uses IgG basaed tests (DGP IgG, tTG IgG, EMA IgG, and maybe the older AGA IgG. Best wishes.
  11. nvsmom
    Did you get all the tests done? This report goes through them all: Open Original Shared Link One negative test is pretty common which is why multiple tests are best. You have the positive genes, which 30% of the world also has. Only about 1 in 40 of those will develop celiac disease though. The genetic tests have not yet been linked to NCGI though...
  12. nvsmom
    I would guess that he does in fact have celiac disease. That is WAY too many coincidences. Plus the tTG IgA is quite a specific test. It has a false positive rate of only about 5%, and those are generally weak positives - 200 is far from weak. And those weak false negatives are caused by something else, usually hashimoto's, T1D, crohn's, colitis, liver...
  13. nvsmom
    Welcome to the board Do you know what test your daughter had positive? Low IgA is not a test for celiac but it is much more common in celiacs than others. I think celiacs are low in IgA 1/20 and everyone else is something along the lines of 1 in 700. A low IgA will invalidate the tissue transglutaminse IgA, deaminated Gliadin IgA, and enodomysial...
  14. nvsmom
    Welcome to the board. I agree that getting the blood tests done might be a good idea before you have been off gluten for too long. Ask for the the tissue transglutaminas IgA and IgG, deaminated gliadin peptidea IgA and IgG, endomysial antibodies IgA, total serum IgA and maybe the old anti-gliadin antibodies tests. As for withdrawal, it can make...
  15. nvsmom
    Congrats things are going so well.
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  17. nvsmom
    Immunoglobulin A is not a celiac test. It is a control test to see if you are low in IgA because low IgA is much more common among celiacs (1/20) than it is in the regular population (1 in 100's). Low IgA means your IgA based celiac tests (ttG IgA, DGP IgA, EMA IgA) will be negative even if you are a celiac. Unfortunately, the DGP IgG and ttG...
  18. nvsmom
    I agree that you have celiac disease. Without a doubt. IMO, you could take or leave the biopsy. Biopsies do have a false negative rate that can be as high as 20%. Make sure you have at LEAST 6 samples taken if you get it done. If it does end up negative some doctors will say you don't have celiac disease. It could happen (but it is unlikely...
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