jddh
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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... -
@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...
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@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. ...
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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...
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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.
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@cyclinglady—so glad to hear you're on the mend!! That's encouraging.
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jddh reacted to a post in a topic:
Even gluten-free Foods Triggering Reaction After Initial Glutening?
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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...
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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.
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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...
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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. ...
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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...
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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...
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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...
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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...
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Yes, biopsy confirmed. Abnormal lymphocyte phenotype yes, clonal t cells no, lymphoma no. Thanks for all the great diet links. Commence my research!