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jddh

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Everything posted by jddh

  1. jddh
    Thanks for the info squirmingitch, that's fascinating. I certainly agree prima facie that home-kit tests can't be 100% relied upon, and the arguments by that RD are compelling. Just about everything I test is SUPPOSED to be gluten-free, so I'm hoping that the outset likelihood and agreement with a test strip is fairly good evidence. That said, I should...
  2. jddh
    Brilliant Doctor was kind enough to reply to my status email; confirmed his suspicion of an "acquired motility problem" and asked if I've tried Buspar. Hmm...more anxiety meds. Not certain I can safely mix that with Mirtazapine.
  3. jddh
    Well I wouldn't trust my old diet either, but believe you me, I'm careful now. I started ordering these test kits through a recommend by a food scientist when I was ruling out refractory and looking for hidden gluten. I don't know of anything better than this test; my father challenged it at the 5ppm setting with a tiny pinch of breadcrumbs added to a mash...
  4. jddh

    ARCHIVED I Need Help

    jddh replied to moka's topic in Coping with Celiac Disease

    I'm from Canada too, Keven. I know how hard hospital waits and busy doctors can be to deal with. The good news is that it's free; the bad news is that nobody has a lot of time for you! And they tend to give folks a hard time about weight loss without a lot of good solutions. Adding to everyone's voices: it takes time to heal. The first little while is...
  5. jddh
    Many of you probably know Omission Beer—they brew beer with barley and then use an osmotic process to remove the gluten after brewing. Despite being technically "gluten-reduced," they market their product (loudly) as being gluten free; consistently below 20ppm. However a lot of celiacs—including me—find that drinking their beer triggers glutening sympt...
  6. jddh
    While dealing with some stubborn symptoms that have persisted despite a “gluten-zero” diet (I’ve discovered I used to make some mistakes here and there without obvious reactions), I’ve bought a whole bunch of GlutenTox test strips to be absolutely sure some suspect foods are safe. These test kits are widely approved for used in the food industry, and th...
  7. jddh
    You're right, there are pills for stress I take a small daily dosage of clonazepam, and a mid-level dose of mirtazapine. Both make a difference, and that's one more brick in the stack that explains this as deeply stress-related. I'm reluctant to take more benzos given they're addictive, though indeed, doubling my dosage for flights or intense periods totally...
  8. jddh
    Thanks as always, Colleen and Beth, for your thoughtful responses. It's both a relief and a frustration to identify stress as a causative factor—there's no stress-free diet to follow; no pill to take! It's a management issue, and it takes time. I'm sure it's going to get better for me, but it's going to take some real work, and in a sense a bit of re-wiring. ...
  9. jddh
    Still here, still nauseated. What a stubborn problem! I went on a two-week vacation to Hawaii noticed marked improvement: many meals would produce no reactions at all. Hooray! This persisted for at least a couple weeks after returning home, and I took the opportunity to re-boot my life, getting back into cooking yummy, completely gluten-free food, exercising...
  10. jddh
    Still get the same error in my browser.
  11. jddh
    Same problem with Safari 8.0.6. Console shows "TypeError: undefined is not a function (evaluating 'el.getStyle('position')')" and repeats that error every time I try to click the member menu open. Something about the drop menu isn't jiving with Prototype on Safari/webkit.
  12. jddh
    Well they weren't helping I had been eating those noodles and several contaminated foods regularly BEFORE my nauseous period started. Once that began, I really limited my diet, and since then, I've become much more conscious about the need for a 100% gluten-free regimen. I was a somewhat cavalier "symptoms = gluten" guy before my troubles began....
  13. jddh
    These venerated rice noodles are often boiled in soup or stir-fried in many Malaysian, Chinese and Thai dishes. I managed to cause myself "silent" damage by eating these for years in restaurants, and buying the first ones I saw in grocery stores. They are made fresh, and upon recent close inspection, they contain wheat Anyone know of a brand of gluten...
  14. jddh
    SIBO is a disease, but can also be symptomatic of/caused by other issues, including celiac disease. A difficulty of separating the two pathologically is that SIBO often presents with the same changes in the small intestine (inflammation, villous atrophy). So if the endoscopy results report inflammation and villous atrophy, this could be indicative of SIBO...
  15. jddh
    That's a very understandable reaction. Despite our various suggestions, you might benefit from refraining from Googling all the many possibilities while you're waiting for results. Chances are the answers will be simple and easily manageable! Don't sweat the WebMD extremes
  16. jddh
    If your biopsy comes back fine—congratulations, you’re not suffering the inflammation and villous atrophy that most of us have had to deal with! However if the “optics” of your endoscopy suggested celiac disease, your biopsies will likely confirm this. IF you’ve stuck to a gluten-inclusive diet (have you?) If you have some optical change in your gut,...
  17. jddh
    You’ll read this often in this forum, but it’s worth keeping in mind that the “gold standard” for diagnosing celiac disease is with an endoscopy/biopsy. A positive blood test without a biopsy doesn’t always mean 100% guaranteed celiac disease (though if your TTG numbers are especially high, it’s quite likely). If the months go by and you’re still not ...
  18. jddh
    May I ask what side-effects you encountered with Budesonide? I found it quite tolerable while on it, but noticed some withdrawal effects. (Isn't Uceris the same thing?) I hear tell of folks that stay on Budesonide indefinitely if they need it, but of course that is highly respective to the individual. Sounds like you need consistent long-term therapy...
  19. jddh
    How were you diagnosed? How long were you feeling symptoms prior? Besides a primarily whole foods diet, you might consider looking for packaged items (ie. rice) that explicitly state "gluten-free" on the package. It's likely overkill in the long-run, but in theory anything that isn't in itself a whole, unprocessed food may be subject to gluten cross-contamination...
  20. jddh
    I'm sorry, I neglected to reply to your question. I've been told vague answers by GIs that the stomach can get lazy if not put to constant work, so especially in a case of reduced intake, it's better to keep it a little bit busy most of the time. I would theorize that leaving your stomach empty for longer periods likely also produces stomach acid with nothing...
  21. jddh
    Little update: still feeling about the same darn way I’ve been feeling since August ’14. A bit of a letdown from the relief at the Mayo of having that scary diagnosis reversed. Still grateful for that, of course, but still very much wanting to get back to my life. Chronic nausea is really preventing that from happening. Domperidone brings on my symptoms soo...
  22. jddh
    As other folks have said, you won't be "put to sleep" in the sense of general anesthetic. Just a nicely sedating IV—you'll be sleepy and free of the anxiety you're currently feeling. The prep is annoying, but I would suggest that the worst part is the worry you're experiencing. Try to relax and know that we've all done it—some many times—and we're all here ...
  23. jddh
    I'm still dealing with this and I wanted to note some successes: 1. Domperidone. Similar mechanism to reglan/metoclopramide. Not available in the US, but it is in Canada. I found it to be helpful, though not a perfect cure. 2. Cannabinoids: I live in an area where medical cannabis dispensaries are easy to come by, and I can confirm some definite symptom...
  24. jddh
    In agreement (and support!) of @crazymurdock — not only is Dr. Murray one of the leading experts and clinicians of celiac disease, he is thorough, conscientious and generally a wonderful guy. I needed special consultation for a runaway diagnosis from a GI with relatively little experience in complicated celiac disease, and the expenses and sacrifices paid/m...
  25. jddh
    Hi friends, After dealing with a roundabout diagnostic path that led me toward, and back away from, refractory celiac disease, I am left with persistent nausea that is suggested to be likely a motility disorder that was probably triggered by my (general) celiac disease. Has anyone here been treated successfully for motility problems? My symptoms are...
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