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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Well if you want any more celiac testing you'll have to eat gluten again or you'll get false negatives. Just so you know. And when celiacs go back on gluten for a gluten challenge, they almost always have much, much stronger reactions to it & many times are unable to complete the challenge. As to some days better than others..... that's normal. It...
  2. squirmingitch
    Looks like the GI took biopsies from all the right places & the correct number of them. I would request a repeat of the blood work - make sure to continue eating gluten every day. It is entirely possible that the lab goofed on your blood work. I would also request the gene test to see if you have the celiac gene(s). I found this & it's a really...
  3. squirmingitch
    Jackie, we need a little more information please. Were those the only 2 tests done on you? The 2 tests you posted are negative but that is not the full celiac panel.
  4. squirmingitch
    Fyremaker, do you have a copy of the actual pathology report on the biopsies? How many did the doc take and from what areas? Does it say more than this that you wrote? A. NEAR TOTAL VILLOUS BLUNTING WITH INCREASED INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH CELIAC DISEASE. B. ANTRAL MUCOSA WITH MILD TO MODERATE CHRONIC ACTIVE GASTRITIS.” ...
  5. squirmingitch
    Open Original Shared Link Open Original Shared Link
  6. squirmingitch
    I could be wrong but am pretty sure the UK only does the basic screening -- only 1 or 2 of the celiac blood tests instead of the 6 which comprise the full panel. You might find it easier to eat the gluten before you go to bed in an effort to go through the worst of the symptoms while you sleep. Eventually, it will all catch up to you though over a ...
  7. squirmingitch
    Reading this, it didn't sound like the GI doc took biopsies until I just read your last post. I'm so glad he did! I couldn't understand why he would say it looked like celiac but not take biopsies. Okay, so now you're looking for what else could cause this. Persist, persist, persist! I wish you the best & hope you find the answer very soon....
  8. squirmingitch
    How long have you been gluten free? Do you eat out? Do you eat food others prepare for you? Do you have a shared kitchen?
  9. squirmingitch
    It's entirely possible it was celiac causing the infertility -- it's a known symptom. Having said that, it could be something else but I'm leaning toward celiac. There is no timeline like you're asking about. We are all individuals & in that respect timelines can't be pinned down. People can go for years & years & years with no symptoms. There...
  10. squirmingitch
    They should be okay there. They have time to get there as long as they don't need gas which they may not be able to get and if the roads aren't clogged with other evacuees. At least they won't be relying on getting a hotel room!
  11. squirmingitch
    Fundog told you like it is.
  12. squirmingitch
    Thanks Fundog. I'm inland about 65 mi. from Jacksonville & can you believe it we are not yet under any watches or warnings. Yay! In my area we have tons of huge old oaks & any wind & rain makes limbs break & fall on the power lines so I don't expect to escape without power failures. I hope we escape everything else. I hope your son ...
  13. squirmingitch
    DH can look like that but so can many other skin conditions. The only way to know would be to get a dh biopsy. Tell us more about how it acts please. What symptoms of celiac do you have? If I don't reply for a while it's because I'm dealing with Hurricane Matthew & may be terribly busy or have lost power.
  14. squirmingitch
    I wouldn't touch it with a ten foot pole!
  15. squirmingitch
    Great sleuthing GFin DC!
  16. squirmingitch
    You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
  17. squirmingitch
    Gluten withdrawal. It's real. I agree with what cstark said but I call it gluten withdrawal. Your body really does get "addicted" to gluten and when you go gluten-free, then the body has to cope with the withdrawal of a substance it was used to getting on a regular basis even though that substance was killing you. It isn't much different than drug addiction...
  18. squirmingitch
    I would suggest you test your daughter through a doctor. The Enterolab tests are not recognized as accurate or reliable by the medical profession. See this link from the Chicago Celiac Disease Center: Open Original Shared Link
  19. squirmingitch
    OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
  20. squirmingitch
    NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is...
  21. squirmingitch
    You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark...
  22. squirmingitch
    Make sure she keeps eating gluten (only a saltine or two or a single slice of bread per day) until the endoscopy is finished.
  23. squirmingitch
    Yes, you are negative which means you don't have celiac disease. You could however be non celiac gluten intolerant which there is no test for at this time. What are your symptoms that led to you being tested?
  24. squirmingitch
    I think it's absolutely worth exploring the possibility of celiac disease. Your PCP can order the tests -- any doctor can. This is the full, current serum panel and you must be eating a gluten diet, not a gluten light diet or a gluten free diet or you will get false negatives. Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA...
  25. squirmingitch
    egs1707. Are you in Canada? It's NOT a good idea to go gluten free between now & the GI appt. and here's why.... MOST of us have MUCH stronger reactions to gluten when we go back on it for the endoscopy. A lot of people have had such strong reactions that they have been entirely unable to complete the challenge and have to call it quits...
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