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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cyclinglady reacted to a post in a topic:
Searching For Refractory Friends
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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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ARCHIVED Total disappearance of common colds?
jddh replied to jddh's topic in Related Issues & Disorders
@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... -
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...
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ARCHIVED Struggling with Rifaximin
jddh replied to jddh's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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. -
ARCHIVED Struggling with Rifaximin
jddh replied to jddh's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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... -
ARCHIVED Confused about my history of symptoms
jddh replied to gjmama's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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. -
ARCHIVED Struggling with Rifaximin
jddh posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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... -
ARCHIVED Anyone done commercial testing?
jddh replied to jddh's topic in Gluten-Free Foods, Products, Shopping & Medications
Thanks @LauraTX, @squirmingitch had recommended them before, and finally I've just joined up. I'll see about collaborating with them. -
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...
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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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ARCHIVED Anyone done commercial testing?
jddh posted a topic in Gluten-Free Foods, Products, Shopping & Medications
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