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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Then there is no point in you keeping that doctor appointment & getting the serum celiac panel.
  2. squirmingitch
    Welcome to the club! YES! It's entirely possible you've been suffering with celiac for decades but didn't know it. Hindsight is 20/20. There are many of us who can trace our disease back long before we put 2+2 together or got a doc to put 2+2 together. You're extremely lucky your doc actually listened when you said "celiac". Wow, you got a good one! Hang...
  3. squirmingitch
    They've been told over & over & over again how to reliably test their product in the correct manner but they seem to refuse to listen and change their testing methods.
  4. squirmingitch
    Thanks for letting the community know about this Karen.
  5. squirmingitch
    Fingers crossed!
  6. squirmingitch
    Do you have a shared household? Do you eat out? Are you eating oats? Are you sure you're not getting cross contaminated? Have you read our Newbie 101 pinned to the top of the Coping section? How was the biopsy done? ON a lesion (or rash)? That is not a biopsy for dh. A biopsy for dh is taken adjacent to a fresh lesion & there is an immunofluorescent...
  7. squirmingitch
    I have been meaning to write up my journey of discovery process but just haven't had the time. I still intend to and when i do I will post a link back to this thread. To make a very lengthy, complicated story into a very short synopsis; I have discovered I am an ultra super sensitive as well as the same for oats, even purity protocol grown oats or oat...
  8. squirmingitch
    See that a doctor tests you properly for both celiac disease as well as gallbladder. Many celiacs have been dx'd with gallbladder problems, had the gallbladder removed & symptoms didn't resolve because it was actually celiac but they weren't tested for that. Gallbladder can be a problem concurrently with celiac so really you need to be throughly checked...
  9. squirmingitch
    What country are you in?
  10. squirmingitch
    christy73, I fail to understand why your doc didn't do your blood work prior to the biopsies. Why were you having an endoscopy? When the biopsies came back positive for celiac, did the doc tell you to go gluten free right away? This is all backwards. You get the blood tests & then the endoscopy not the other way around. Plus, biopsy is the gold standard...
  11. squirmingitch
    Just MHO but I think a patch test at this point is a waste of time & money. Just make sure to take the instructions for how it's to be done & make her read it. I'm going to tell you something ~~~ lots of people have gone in & talked to the derm about it & then by darn! the derm goes & takes it from directly ON a lesion anyway!!! Usually...
  12. squirmingitch
    A PCP is not going to do a skin biopsy but can order all the blood labs. I dunno, do you think the derm will go ahead & do a dh biopsy put out or not? If the answer is yes, then you might as well do it there than try to get an appt. somewhere else where they may act the same way. In the meantime, you could call around or email different derms & ask...
  13. squirmingitch
    Fundog those purple polka dots will fade & in time disappear. it takes a while but they do go away.
  14. squirmingitch
    I knew I forgot something. Those with dh tend to have none to milder, fewer GI issues than those celiacs who do not have dh yet we do have the same damage to the villi. I too, had more GI issues before the dh presented. After the dh presented, I had random issues other than I had horrid bloat and gas & belching in the latter stages before the...
  15. squirmingitch
    You need to be worried about cross contamination. Read our Newbie 101 pinned to the top of the Coping Section. It will tell you what you need to change.
  16. squirmingitch
    Gemini gave you good information. I'm going to repeat some of it because it bears repeating. NO MORE steroids!!!! You should have been finished with the Pred on the 29th. That makes 5 days you've been off it. You need a minimum of 2 weeks off. DO NOT QUIT EATING GLUTEN YET! You will get false negatives on testing. Now..... Oh you poor...
  17. squirmingitch
    A milky white film on the skin that itches does not sound like dh however there are many skin conditions associated with celiac disease that are not dh. A strict gluten free diet is the requirement. No screw ups!
  18. squirmingitch
    I agree! MAKE SURE TO KEEP YOUR DAUGHTER ON GLUTEN UNTIL THE ENDOSCOPY IS DONE!
  19. squirmingitch
    I wish I could tell you the magic potion but unfortunately I can not. As I stated, I am experimenting myself. IMHO if you had trouble with Dapsone before then I wouldn't recommend trying it again in any dose. I was on the doxy 100mg twice a day for 18 days. Then I had to up it to the two 100mg caps in the am & than again in the pm. I think it took...
  20. squirmingitch
    Below is an email I received from Bob's Red Mill on January 15, 2016 in response to my inquiry to them regarding whether they only use gluten-free oats grown under a purity protocol or if they also source optically sorted oats for their gluten-free oat products. Let us be perfectly clear that Bob's Red Mill does NOT use only oats grown in dedicated...
  21. squirmingitch
    The gastro needs to know that you were & had been gluten free at the time of the blood test!!!!!!!!!!!!!!!!!!!!!!!!!!!! Whatever you do, continue eating gluten (not gluten light) until the endoscopy!!!!
  22. squirmingitch
    Cheers to you Fundog! Congrats on seeing improvement and having a fantastically supportive husband.
  23. squirmingitch
    I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
  24. squirmingitch
    https://www.celiac.com/forums/topic/115445-relief-and-it-isnt-dapsone/ Click on the above link & read it.
  25. squirmingitch
    Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now.
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