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jddh

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Everything posted by jddh

  1. jddh
    Hi @Rebecca Clayton: type 2 RCD here — we're a rarity on this board, but there's a few of us! Re: budesonide. Entocort is just a name brand of budesonide. May I ask how long you were on 6mg? Sometimes it takes a while for that medication to do its work. Mayo Clinic's approach to open capsule budesonide at 9mg is one capsule worth of granules chewed w...
  2. jddh
    @bethanybryant — first the disclaimer: I’m not a doctor, etc, etc. If it were me, I would try to get an answer from the Mayo doctors who are going to evaluate you. Without that, I would not try to alter your treatment prior to visitation unless already under express instructions from your current doctor. I would expect the Mayo to pick up wherever you...
  3. jddh
    @bethanybryant — you’re not alone! My 2 cents: An very limiting diet like Fasano is worth a consideration. If RCD is in the mix, it’s worth a very prejudiced analysis if there could be any hidden gluten perpetuating inflammation. I’m working through a “Fasano+” — essentially nothing sold in a package. Nausea is my main complaint, like you. It’s tough. ...
  4. jddh
    Hi @Jpate, Sorry to not respond to my own thread sooner. Mine is a long story that started when I started this thread in 2014. After a few confusing years and several clinic visits, scopes, prescription trials etc, I continue to show test results that are "suspicious" for RCD2. The current supposition is that I am/have been in a transitory state away...
  5. jddh
    Hi @moomoo5, I've had a long & winding story in & out of non-responsive celiac activity. Most recently, I have some cellular evidence suggestive of type II RCD, but it's not confirmed. Anyway, I've learned too much about this stuff, and I'm definitely not healing. I can chat with you if you like.
  6. jddh
    @cyclinglady thanks for checking in Restricted diet didn't do much. Still had some VA last time they checked. Heath still otherwise fine, so RCD remains unlikely. My sxs kick in lockstep with life stress, so that kind of points to some general IBS stuff on top of celiac disease. Very doubtful I'm getting any gluten in, but fingers crossed my system is just...
  7. jddh
    Something that's always weirded me out since I became somewhat non-responsive on repeat biopsies: I don't get colds anymore. Ever. I used to get maybe 5 a year — standard stuff. Nothing in the past 3 years. I get a lot of sleep these days, but still. My girlfriend gets sick; I do not. Anyone else find their common transient illnesses take a s...
  8. jddh
    They didn't suggest any probiotic support. Ultimately the side-effects of this drug stabilized approaching the end of the course of treatment, though after it was finished, I was perhaps a bit improved, but no profound symptom resolution for me. Darn! The search goes on.
  9. jddh
    Thanks for your thoughtful responses folks! I ended up transitioning to taking the antibiotics with food, instead of on an empty stomach. This helped with the side-effect symptoms. I hope it didn't compromise the treatment. Things did indeed settle down mostly after the first few days in combination with the dosing change. Today is my first day off Rifaximin...
  10. jddh
    It's easy to assume that symptoms=gluten and no symptoms means it's ok! We've all done it. But you must avoid gluten at every meal if you have a confirmed diagnosis. Instead of waiting for symptoms, read up on labelling laws, ingredient checks, and certification programs. Your body will thank you.
  11. jddh
    Hi friends, I know there’s other posts about Rifaxamin here. I’m writing mostly to share and vent, and wondering if anyone has updated experiences. Long story short: (long story here) somewhat unresponsive celiac disease after years of lax diet. Still symptomatic and somewhat inflamed after 1.5 years of extremely careful diet. They cultured som...
  12. jddh
    Thanks @LauraTX, @squirmingitch had recommended them before, and finally I've just joined up. I'll see about collaborating with them.
  13. jddh
    PPIs should not affect your digestion of gluten one way or another. Many folks with celiac disease may have villous damage without obvious symptoms. Others eventually get symptoms after the disease is "activated," but exactly how or why this happens is not yet clearly understood. Biopsies are generally done after someone has symptoms, and likely already has...
  14. jddh
    @cyclinglady—so glad to hear you're on the mend!! That's encouraging.
  15. jddh
    Considering doing a commercial test on some staples and medications as I contemplate continued inflammation after years of a strict diet. Has anyone sent away for this? Right now my top consideration is ELISA-TEK's gliadin test, which I believe is the equivalent of the standard R5 ELISA R7001. Open Original Shared Link Open Original Shared Link
  16. jddh
    Yeah that's an odd one. I once had an utterly horrible reaction to plain steak and a salad topped with lots of commercial powdered parmesan cheese, at a restaurant. I always suspected a flour or barley-based anti-caking agent in the cheese, but possible of course it was something else.
  17. jddh
    Well it might have affected my biopsy, in any case it wasn't squeaky clean... Updated my long story here if you're interested.
  18. jddh
    So I got tested again, and bad news is I had some partial villous atrophy in December. Damn. However: (1) I had a big gluten mistake in October, about six weeks prior to the scope; and (2) they redid the full workup, and this time I DON'T have evidence for abnormal lymphocytes, nor a monoclonal T-cell response. According to the doctor...it just kind of looks...
  19. jddh
    Right, it’s boilerplate legalese, but why would it necessarily follow that the product is safe for all us “non-mainstream” consumers? Particularly the above user who feels they had a reaction to it? It’s been suggested on this site and elsewhere that some Tazo teas aren’t gluten-free, so seems to me there would be an opportunity there for cross-contamina...
  20. jddh
    Hi friends, Wondering if I can pick your brain for any surprising sources of cross contamination that caught you off guard in your diet. I continue to have some non-responsiveness on pathology after many years of making mistakes, and more recently a year where I really thought I was being careful. The most likely explanation remains that I'm possibly...
  21. jddh
    Thanks nvsmom—I expect you're right. It was two slices of pizza; not multiple meals. And my system ought to have been clean as a whistle before. Definitely can feel some gut burnout now a couple days later Not surprising. I've emailed The Man at the Mayo; see what he says. Cyclinglady what a nuisance! Is that your normal healing window? I've been off t...
  22. jddh
    So a year after my misdiagnosis of refractory disease, I am scheduled to liquidate my meagre assets and get back to the Mayo to see the brilliant celiac doctors for a follow-up scope. Specifically to ensure that my villi remain healed, as they were last year, on a scope shortly following the previous that caused all the misdisgnosis fracas. HOWEVER my wonderful...
  23. jddh
    It's also possible that prior "active" celiac disease can trigger other functional digestive disorders, even after transitioning to a strict gluten-free diet. I'm also in the camp of persistent symptoms despite a strict diet, and a top celiac doctor at the Mayo assured me of this. That said, as others have said above, serology testing can give you vital...
  24. jddh
    So in states where they’re not allowed to call themselves gluten-free, Omission’s website mission statement does not mention “gluten-free”; whereas in states where they can, they do. Regardless, midway through the homepage (outside of Portland), under “Test Results,” they include the disclaimer that you usually see on the actual product label: “[…]Omissi...
  25. jddh
    Thanks for the link. Indeed the consensus is murky at best. What I know is the testaments from many folks around the internets that Omission in particular triggers symptoms. I think this puts weight on the argument that this product is rather unsafe. They call their product gluten-free throughout their website, and quite often in their social media postings...
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