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jddh

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Everything posted by jddh

  1. jddh
    Oh I get it now—these are your partner's results, already diagnosed and on gluten-free diet. If they saw blunted villi earlier, than preserved villous architecture is good news—they are back to normal! I have just received similar results; they usually call this "disease in histologic remission"; ie. your partner is healing. But your GI will kno...
  2. jddh
    Increased ILs indicate inflammation in the gut. In the context of celiac disease, your results sound like "light" damage, or perhaps healing tissue from prior damage. Do you consume gluten in your diet? As @cyclinglady says, it's important to look at blood markers to see if you've been having an autoimmune reaction to gluten. However, increased...
  3. jddh
    Folks, I have a crazy update. I went to Rochester MN to the Mayo to see Dr. Joseph Murray, one of the world experts on celiac disease. He looked over my last biopsy slides and ordered some deep tests; things I've been waiting months for in Canada. He concluded that my GI tract is 95% healed, full of healthy villi. I DON'T HAVE REFRACTORY...
  4. jddh
    Is the abdominal pain the same symptoms as you had before being diagnosed celiac, ie. are these "glutening" symptoms for you? Do you think you're losing weight because you've had to limit your diet, or because of some other reason? Standard differential approach among general physicians tends to be: 1. Check for ulcer (test H. Pylori, prescribe...
  5. jddh
    I imagine they well might! I have a bundle of related expenses to run against my Canadian tax return this year. Up here they require expenditures to surpass a certain percentage of income to qualify.
  6. jddh
    They're good for checking for cross-contaimination, and in my case, ruling out other causes for refractory disease. Can sense down to 5 ppm.
  7. jddh
    What I mean is I tested a combination of my diet foods in order to find ANY gluten among them, to begin with. I didn't suspect anything, so I started there. If the mash tested positive, I would have started testing individual foods. Afterwards, I had a friend create a similar mash including a bit of straight-up bread, and ran the test. It caught the gluten...
  8. jddh
    Thanks for the info Colleen. I have essentially been on this diet for 2.5 weeks—eating almost nothing but my Jewish dad's chicken soup, which coincides nicely with this thread. Plus as mentioned in the other thread, I ran my entire diet though GlutenTox strips, so assuming their effectivity, I am officially contaminant-free. So for my part, probably n...
  9. jddh
    About $70 for 5 strips. What (I think) you can do is make a mash of your entire diet, and test it with a single stick. Open Original Shared Link
  10. jddh
    I can confirm it is most certainly gluten-free—ran a GlutenTox strip on it.
  11. jddh
    Hi Colleen, Quite right—I am well on my own now on identifying triggers. However I still react to gluten too, so I'm interested whether others react to anything that is giving me trouble. @Waitingindreams has some complex sensitivities too, so it's interesting to compare notes. I am definitely transitioning to whole foods in absolution. It will t...
  12. jddh
    Yes, me too on the veg broth! Interesting. I'm getting some gluten test strips. Maybe I'll run that product.
  13. jddh
    Remember I was telling you about a simple congee that made me feel progressively worse when I repeated it in meals? That was the main ingredient. Just tried another simple soup with it and had the same result. Mild "glutening" symptoms in my book, as usual. Just tracking down triggers...
  14. jddh
    Open Original Shared Link Mine lacks the "free range" title, but is otherwise the same. The only suspect ingredient is "chicken flavor"; they don't say much about that. This stuff seems to set me off, though it appears I have a fairly complex condition.
  15. jddh
    Yes, biopsy confirmed. Abnormal lymphocyte phenotype yes, clonal t cells no, lymphoma no. Thanks for all the great diet links. Commence my research!
  16. jddh
    Hi crazymurdock, thanks for writing. I am type 2 as well—diagnosed six days ago. May I write you via private thread? Would love to chat more.
  17. jddh
    I'm also getting ready to round up and re-examine diet VERY carefully. It's almost inconceivable that I'm ingesting any gluten, but it's time to get damn sure. After that, despite my careful analysis of my diet today, I'm going to have to take it apart and put it back together, challenging specific ingredients and looking for triggers. The academic literature...
  18. jddh
    Hi folks, Going long here to look for pen pals with confirmed refractory celiac disease. Still excluding some other possibilities, but it looks like I'm part of this exclusive club. If you know any other folks out there who feel like talking, I'd love to connect.
  19. jddh
    Thanks for replying. I suppose I could seek a second opinion, though this was done by the putative top brass at my city hospital. I would tend to trust their lab, much as I would rather hear other news. I've seen my visual endoscopy—there's some duodenal flattening, but no ulceration or other visible nastiness. It presents as though I've been allowing a l...
  20. jddh
    Well, I'm diagnosed. 3 months later almost to the day. Could have been much longer, and I'm grateful that it wasn't. Refractory. Type 2. Clonal lymphocytes observed. Damn. I can't even FIND other threads about this type on this message board. Does anyone know of any, or individual users? I suppose we're statistically infrequent. Damn.
  21. jddh
    Here's a little update; I can't believe I started this thread in July. My life has changed so much since the weeks before first writing. Every day is now focused around trying to get a good sleep, deciding what to try eating, waiting & dreading getting sick a few hours after eating, trying to pass the time while feeling sick. Wash, rinse, repeat. I...
  22. jddh
    Thanks again Colleen—good thought about valarium. Would be nice to not stack too many meds. Doc gave me zopiclone, which is in the umbrella of ambien. A band aid. Also considering mirtazapine, which falls more under the trazadone category. Maybe good for pulling up weight too.
  23. jddh
    How about metoclopramide? New doctor gave me a script, but also gave "fair warning" about some small incidence of prolonged (> 3 month) use causing involuntary muscular spasming, occasionally irreversible. Yikes! That stuff got black-labelled since I was given some back in around 2006. I used it a bit back then and my muscles still work fine... Still...
  24. jddh
    That clinic was kind of a bust; I posted about it here if you care to read some whinging But here's a real question: getting good sleep. I was enjoying popping an ativan before bed every few evenings to chill out after an anxious day & get a smooth, uninterrupted sleep. But I'm finding that if I do that for two consecutive nights, the following night...
  25. jddh
    All tests back; everything is eff'ing normal except weirdly high carotene. No parasites; ultrasound showed no abnormalities. I got fast-tracked to an internal medicine clinic at the hospital, which turned out to be partially a training program for senior med students. A fourth-year student spent a lot of time with me and did an in-depth physical, but eventually...
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