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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    Why won't it stop snowing???? Whimper whimper.
  2. nvsmom
    Those are old are less reliable tests. The reticulin IgA is rarely used any more, and the anti gliadin tests are not that reliable. The tTG IgA is not a bad test but there are others that should be done like the deaminated gliadin peptides tests (DGP IgA and DGP IgG), and the tTG IgG. Also a total serum IgA should be done to make sure she has enough IgA for...
  3. nvsmom
    It's not uncommon, at least around here, for a celiac to not be positive in all of their tests, be it the various blood tests, endoscopic biopsy, or skin biopsy for those with the rash. That's part of the reason so many tests have bee created... although the doctors won't admit that. If you look at the sensitivity of the tests on page 12 of the linked...
  4. nvsmom
    Yes, we don't all react immediately or the same. There are some celiacs out there who have no obvious symptoms at all. It really varies person to person.
  5. nvsmom
    Your recovery sounds pretty normal, it can be a long slow process. Some people feel better in weeks but there are others who need months or ears to gt back to good health. I experienced those ups and downs too but after nine month gluten-free It was mostly the ups. Keep giving it time. In the meantime, it is good to check nutrient levels. Celiacs are often...
  6. nvsmom
    Perhaps check and see if you can have an endoscopic biopsy (to check for celiac disease) at the same time as your colonoscopy? Kill two birds with one stone. Make sure you continue to eat gluten until all testing is done. Best wishes.
  7. nvsmom
    I can't speak to the hematuria isse, but I do want to address the things said about the tTG IgA. The tTG IgA does NOT show non-celiac gluten sensitivity (NCGS) ....at all. The tTG IgA indicates that here is an autoimmune attack to the mucosal lining (of the intestines) occurring, but in NCGS this does not occur. Those with NCGS do not have damaged intestines...
  8. nvsmom
    Ontario is hard on celiacs. You might have to pay out of pocket to be tested, and I personally think testing is a good idea for most people who suspect celiac disease or non-celiac gluten intolerance (NCGI). Knowing can help with will power as staying gluten-free for life is quite a commitment, plus your offspring will be at risk of developing celiac disease...
  9. nvsmom
    I agree. Genetic testing just says whether or not you are in the higher risk minority but people in the the other 70% can develop celiac disease too, just not as often. I am afraid I don't know what those results mean either. Good luck with the doctor.
  10. nvsmom
    I know how you feel. I did not want to go to the doctor with this, I hate doctors, so I bought a home test ( Biocard tTG IgA test) but when it came out positive, I finally felt that I had to go. Lol Good luck with the doctor!
  11. nvsmom
    Welcome to the board. Hashimoto's and Grave's are fairly common among celiacs; I think it could be worth testing for. If your doctor will ate that long to get into, perhaps a drop in clinic might be the way to go - i know how frustrating the waits can be (I am in Alberta). At a clinic you might get the abs ordered faster and then all you have to do is...
  12. nvsmom
    Yes. I've had what looks like a butterfly rash (redness) for a few years. It fades a bit at some times, coincidentally when I feel well, and gets redder at other times. It could be a roseaca though as the rheumy is sure I do not ave lupus. I hope she is right but only more time will tell. I am hopeful she was right and it was all due to celiac disease....
  13. nvsmom
    Awesome!
  14. nvsmom
    'm afraid I can't comment on the endoscopy report. I never had it done myself, so I have not bothered learning much about it. Pages 8-9 of this report go into some detail as to what is normally seen in the biopsy. Open Original Shared Link Keep in mind that some celiacs do pass the biopsy - it really isn't that unusual. You have a positive test (tTG IgA...
  15. nvsmom
    The EMA IgA is rarely positive if the tTG IgA is not. The EMA tends to become positive after the tTG IgA has damage to the villi. Then the body makes EMA and wipes out the top layer of damaged villi in a big autoimmune over reaction.... That's a bit simplified but basically how it works. That's why many labs (like mine) only run the EMA IgA AFTER a positive...
  16. nvsmom
    So true. None of my doctors ave heard of the DGP tests, and I don't think it is available here.... This is a city of over a million so you would think someone would spread the word.
  17. nvsmom
    I'm another who was suspected of having lupus. I had arthralgias, fatigue, positive ANA, a butterfly type rash and many other symptoms. It was all down to celiac disease though. - the symptoms can be surprisingly similar. Best wishes to you while you wait for your test results. I hope they come back fine.
  18. nvsmom
    Those are celiac disease symptoms but they old also be due to non-celiac gluten intolerance (NCGI). When all testing for celiac disease is done, perhaps a (6 month) trial on the gluten-free diet could be helpful. What tests were done btw?
  19. nvsmom
    I do not know much about elevated IgA. I know it is related to infection (in the mucosal linings), rheumatoid arthritis, liver disease, and SLE; it can also be elevated for no obvious reason. That's good that she is running more tests. She only ran one celiac disease test, and one is not usually enough. False negatives are not rare. There is a 5-25% chance...
  20. nvsmom
    Sorry. I did not make that very clear, did I? I did mean that it is not unusual to have negative tests (like a biopsy) with other positive tests (like the tTG IgA and EMA IgA). Sometimes it happens in reverse with a positive biopsy and negative blood tests. I've never read that number anywhere, it's just an observation of many people's experiences that...
  21. nvsmom
    I agree. a mild positive is still a positive.... It's like taking a pregnancy test, for some people that double line is darker than for others, but pregnant is pregnant. The specificity of celiac tests (except for the AGA tests) is usually 95% or so, some are as high as 99%. This report, on page 12, shows the specificity of the various tests (how often...
  22. nvsmom
    LOL I was sitting here trying to figure out how you got 3320 as a multiple of 2. LOL I need more coffee. Good luck with the dentist
  23. nvsmom
    Yep, I skipped the biopsy because I had positive tTG IgA and EMA IgA. I looked at the specificity of those tests and decided that was good enough for me. Plus, I knew that the biopsies are not perfect and have heard too many stories about people who doubted their diagnosis just because one out of three tests (the biopsy) was negative.
  24. nvsmom
    I'm not a huge fan of the genetic tests. They basically tell you if you are in the group of people (around 30% of the population) which is more likely to get celiac but a negative test doesn't mean you can't get it. We have board members who had negative DQ2 & 8 tests yet they had positive tests for celiac disease.... Doesn't seem to help much in my opinion...
  25. nvsmom
    I think deficiencies often have to with inflammation and luck. I am a celiac, and was undiagnosed for close to 40 years yet I was not deficient in anything, yet I was low normal in a couple of things though. Those with NCGI do end up with nutritional deficiencies too.
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