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squirmingitch

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by squirmingitch

  1. squirmingitch
    They can't test for NCGS. I gave you the tests for celiac. If you think you've been tested for celiac then you should get your records & make sure. Also, if you actually were tested for celiac, that doesn't mean you are good for life. Celiac can present at ANY age so if you get tested it doesn't mean you will NEVER present with celiac. So IF you DID get...
  2. squirmingitch
    Hellooooooooooooooooooooo
  3. squirmingitch
    I am so sorry to hear this & sorry you are still having dh symptoms. You should never have been on Dapsone for 27 years. It is only meant to carry you until the antibodies get out from under your skin & you get the diet down pat. 2 years is the usual for being on Dapsone. I am afraid you are a victim of Dapsone & this is one of my arguments...
  4. squirmingitch
    It's possible it's gluten. Why off & on, off & on? It can do that until one day it doesn't stop. You say you've had blood tests for everything but have you had the celiac panel? You should get it. here's the full panel: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated...
  5. squirmingitch
    As far as I know NCGS is not covered under the ADA. Never the less, it is my opinion that you should speak up & tell your co-workers and tell your supervisor or employer. You're not asking for special treatment really. You're just asking for a clean workspace. IMO, employees making crumby messes is not hygienic and only invites vermin such as roaches...
  6. squirmingitch
    Jen, are you a diagnosed celiac? If so, then you need to speak up at your work. You come under the Americans with disabilities act & that entitles you to certain protections.
  7. squirmingitch
    I can't see the microwave being the cause of any exposure to you; not with the way you protected your food with the paper towels & the lid (even loosely placed). I really just can't see the steam doing this, I just can't. Ah, just had a thought. The paper towel you put on top of your food..... was that a paper towel from work? Could that have been...
  8. squirmingitch
    The Nima sensor gives false positives sometimes. See: https://twitter.com/GFWatchdog/status/856529478352351233
  9. squirmingitch
    Do you have any other kind of symptoms? Geez, you poor thing! That looks awful & I know it's miserable to live with. Since it's only on 1 hand, it's not likely dh. I wish I could tell you what to do for it. Have you been to dermatologists or just primary care docs? Has anyone ever biopsied it?
  10. squirmingitch
    He's colluding with his friends...... Oh gosh, you were doomed. That explains a lot. Great explanation on the iodine apprehensiveengineer!
  11. squirmingitch
    http://www.thyca.org/pap-fol/lowiodinediet/
  12. squirmingitch
    Eating out is playing Russian roulette. Sorry, the biopsy is just going to be negative & you'll have wasted your time, effort & money. Just 2 weeks, maybe a month max. on the theca.org low iodine diet otherwise, just don't over do the iodine. As time goes by, you'll adjust to knowing how much iodine you can & can't take. I still don't use iodized...
  13. squirmingitch
    rejoiceathome, you are so welcome!!! Oh how many times have I read where people got the dh biopsy after being gluten free & it came back as arthropod bites? Yah, ok. And that's why they are bilaterally symmetrical yes? And that's why my hubs who sleeps in the same bed as me doesn't get these bug bites. That's also why he doesn't get them even though we...
  14. squirmingitch
    OK, good. You understand me & I understand you. We're doing ok then. Yes, I agree, in the beginning you get seemingly 549 different answers on every topic & it takes a while to sort through it all. Oh don't worry about my little comment there --- that was me being tongue in cheek. Sometimes I forget that no one can see my body language or hear...
  15. squirmingitch
    First off, ktyler is correct in the above post. Secondly, I want you to understand what I'm about to say is said calmly & only in an effort to help you understand. I am not yelling at you or criticizing you or being snarky ok? As far as your 1st paragraph up there.....Even if one does not have dh; the symptoms & the damage varies from person...
  16. squirmingitch
    This is absolutely correct. Ging, no, it is not true that those with dh don't get much damage. We do get gut damage and we do get malabsorption & we do get neurological damage. I had tons of other symptoms going on but just didn't put them all together as all being connected to one disease. There are lots & lots of us like that. If I listed all...
  17. squirmingitch
    Ditto what Tessa said.
  18. squirmingitch
    The kind of post you did is certainly allowed. That's what we're here for. What kind of blood work did you have done? Normal CBC stuff or a celiac serum panel? The symptoms you're describing could be celiac disease and then again, it could not be, but it's certainly worth exploring the possibility. For sure something is going on & it needs to...
  19. squirmingitch
    Oh thank you Ging but I am no hero. I am just a fellow traveler down the mind bending road dh can take us down. Yes, in short, what you're saying is correct. You have to give it time & keep your diet pristine & that includes not eating out unless it's a totally gluten-free place. I often tell people that trying to predict the rash is a road to...
  20. squirmingitch
    scarymonster, you went gluten free & then had your endoscopy? Nope, that's not how it's done. 12 weeks of eating gluten every day is what's required HOWEVER you may just luck out since I see you really didn't go gluten free at all. You were still eating sourdough bread & apparently some other things. Oh, spelt is wheat so it doesn't matter that it...
  21. squirmingitch
    IgA deficient means you will test false negative on IgA tests so those are out as far as indicating whether or not you have celiac. That is a control test. As far as this, we would need the results & reference ranges spelled out. Different labs have different reference ranges. Keep eating gluten every single day until the endoscopic biopsies...
  22. squirmingitch
    I think you could be right. Additionally, I have a theory that there are subsets of celiacs - some react worse to wheat, some to barley & perhaps some to rye. Those who react more strongly to wheat would be the largest group of course. When I drank beer, it felt like someone had taken a metal rake to the lining of my guts. I have noticed on...
  23. squirmingitch
    Mine did.
  24. squirmingitch
    You're welcome! It's just a piece it all together thing based on reliable studies & our experiences. We all wish we had more & better answers. Instead, we have to muddle through figuring things out as we go & sometimes it's areal b!$@h to figure out. Sometimes you think you must be going crazy.
  25. squirmingitch
    First you need to understand that when it comes to research & peer reviewed medical studies, dh is like the bastard stepchild of celiac. There haven't been enough studies on classical celiac; when it comes to dh, there have been precious few. We are lacking a ton of hard info. on it. For 7 years, I have been researching dh & I am a research freak...
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