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nvsmom

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Latest Celiac Disease News & Research:

Everything posted by nvsmom

  1. nvsmom
    There is a small minority of celiacs who have negative genetic testing yet have positive blood tests or endoscopic biopsies, and feel better on the gluten-free diet. I'm guessing that it's celiac disease, but I tend to think that if it "looks like a duck, and quacks like a duck, it is probably a duck" .... even if doctors say it is not. That is just my opinion...
  2. nvsmom
    Once you've checked and tweaked your diet, meds, shampoos and such, I would ask for a DGP retest in 3 to 6 months to see if it does go down... Just in case it IS something else that is raising it up. There is a LOT I don't know about those tests, and that probably applies to many of the doctors too. Good luck! I hope you figure it out.
  3. nvsmom
    I agree. You probably need to be gluten-free longer. Most people need 3-6 months before they see steady improvements. And do not forget that some people go through withdrawal in the first few weeks gluten-free, when they will feel worse before they get better. Also, you may need to cut dairy from your diet. Many celiacs are lactose intolerant until they...
  4. nvsmom
    Welcome to the board. The DGP IgA is thought to be one of the better tests for monitoring compliance to the gluten-free diet. If it is positive, it is usually gluten causing it. I do not know what could cause a false positive in that test. Could it be gluten? Is it possible that something was contaminated?
  5. nvsmom
    Glad it is responding to treatment. Give her our best.
  6. nvsmom
    Oh yes! Conflicting test results is one of the main problems people have in getting a diagnosis. I have seen some blood tests negative and others positive, negative biopsy but positive blood tests, or negative blood tests but a positive biopsy.... Just remember that a positive is a positive. There are very few other health issues that will cause a positive...
  7. nvsmom
    Have you cut dairy out of your diet? About 50% of celiacs are lactose intolerant at diagnosis because the villi which makes lactase, that digests the milk's lactose, is not there. Many celiacs regain the ability to consume milk after 6 months or so, but many benefit from some time away from it while healing. I personally had gluten-like stomach aches...
  8. nvsmom
    I think it could have been gluten or food poisoning. Sounds nasty either way. I'm sure someone will chime in with similar symptoms... I hope you are feeling better now.
  9. nvsmom
    It really is a weird disease! When something as harmless as a donut can cause migraines, arthritis, cognitive problems and stomach issues - it really does make it hard to get a full understanding of what is going on! Best wishes.
  10. nvsmom
    Before doing the celiac blood tests, a gluten challenge of 1-2 slices of bread perday for 8-12 weeks is usually recommended. You were gluten-free for 2-3 weeks and the resumed eating gluten 10 days ago? I would personally try to consume gluten for a longer period of time so the test is at it's most accurate. I doubt you will need to go a full 8-12 weeks...
  11. nvsmom
    LOL
  12. nvsmom
    Makes complete sense. Reactions between celiacs can vary hugely. Some of us have a slow reaction, others feel it quickly, and yet others will not have an obvious reaction until multiple exposures have happened. Some react severely and need days off work whereas others feel nothing or just a bit run down, and some swing between the two extremes. I was...
  13. nvsmom
    I'm sorry. I didn't mean to sound glib about that. I do really think it would have been fine as long as it wasn't put in your mouth. I'm glad that it was all worked out fine. Marigolds are nice to plantin a vegetable garden - they supposedly help keep pests away but I can't comment on that as the hare in our neighbourhood likes to eat the flowers. LOL...
  14. nvsmom
    For me it was string, that glittery scratchy kind? Gave me a rash.... the noodle part was fine. LOL
  15. nvsmom
    NO!!! Wow! I've managed to get a 1024 along with the 2048 but I've never hit 2096... Impressive!
  16. nvsmom
    If her tests come back negative, and you suspect celiac disease, make her gluten-free anyways. (Don't go gluten-free before testing is done.) Those tests do miss some people (kids especially) and it's more important to have them healthy than have an official diagnosis. I had to do that with my boys who tested negative. Miraculously they are doing much...
  17. nvsmom
    I doubt you need something to seal it. As long as you don't suck on the necklace, you should be fine. Besides, not many of us wear a noodle necklace for long.
  18. nvsmom
    As far as I know, allergies do not cause intestinal villi damage although some food intolerances can. I do not know about soy and corn, but casein, a protein in milk, can cause villi damage in some but I don't believe it is as extensive as those with celiac disease though. I do not know much about this, hopefully someone else knows (much) more. Scoping...
  19. nvsmom
    That DGP IgA is pretty close to abnormal so I would not trust it completely. If you do decide to keep eating gluten, I would retest periodically as test scores can change. To be honest, I think there is a chance that you could have celiac disease because of your symptoms and because you have a child that has tested positive. Celiac runs in families, and...
  20. nvsmom
    Crohn's can cause elevated tTG IgA but it is usually a very weak positive, and not that common. The tTG IgA is somewhere between 91 and 99% specific to celiac disease, and there are other diseases that can elevate it as well (colitis, thyroiditis, diabetes, liver disease, serious infection) so the chances of crohn's causing a higher tTG IgA is fairly small...
  21. nvsmom
    Welcome to the board. Do you have the normal reference ranges for those tests? They can vary. Generally for the DGP IgA and tTG IgA, the upper end of the reference ranges are 20 or 4, and you are way beyond that. With three positive blood tests, it's pretty much a sure thing you have celiac disease, whether the doctor puts his stamp of approval on...
  22. nvsmom
    The IgA and IgG tests are just to test autoimmune function, they are not celiac tests. These are the test you want: TTG IgA and tTG IgG DGP IgA and DGP IgG (best test for kids) EMA IgA AGA IgA and AGA IgG (older and less reliable tests) If all tests are negative, and you believe gluten is a problem, go gluten-free. False negatives in kids are not rare...
  23. nvsmom
    Give it a bit more time.... That headache is a doozy but I have never met anyone whose pain did not go. Hang in there, and drink extra fluids in the meantime.
  24. nvsmom
    The tests that should be done for celiac disease are: tTG IgA and tTG IgG (anti-tissue transglutiminase) DGP IgA and DGP IgG (deaminated gliadin peptides) EMA IgA (endomysial antibodies) total serum IgA - a control test AGA IgA and AGA IgG (anti-gliadin antibodies) - an older and less reliable test The DGP IgA and IgG are the best tests for young children...
  25. nvsmom
    I too completely agree with Karen, eat ahead of time and order yourself nice drinks. I would think that if you told the family that you have food restrictions so you can not eat there, but you wanted to come and meet everybody anyways, that they would all be flattered. I would be if it was my son's girlfriend. You could always bring some food and ask for...
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