jddh
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by 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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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!
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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.
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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...
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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.
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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...
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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.
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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...
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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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I believe I tested negative for h pylori way back when I had a first ulcer. I have just tested negative again this time.
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Got my blood tests back. Everything is within reg limits, including lipase. ALT & Gamma GT is cool. Ttg was nice & low in June. Everything to do with inflammation/WBC is elevated since previous tests in June, but nothing out of range. Tests in June show oddly high carotene, which is puzzling. I am not turning orange. Still waiting on vitamin A. H...
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Thanks for all your thoughtful ideas. Definitely feels like pancreas or gallbladder could be in play. Waiting on serum tests & upcoming ultrasound that will hopefully speak to those possibilities one way or another. The internet is both a helpful and terrifying source of possible diagnoses; not to be taken seriously outside of medical help, but what else...
