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jddh last won the day on February 15 2016

jddh had the most liked content!

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About jddh

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    Technology, sailing, guitar, music of all shades, cycling & feeling well
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    Vancouver BC

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  1. jddh

    Refractory 1

    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.
  2. @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 a little hyper-vigilant, as I ponder on this thread.
  3. 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 strange turn after diagnosis? I hypothesize having an abnormal/overactive immune system might take down common bugs hard, but I also assume it's far more complicated than that.
  4. 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.
  5. 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, and I'll see if the net effect was positive. I'll check back in a few days.
  6. 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.
  7. 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 some small intestinal juice during my last endo, and guess what? Bacteria! So I’m on day 3 of a 7-day course of Rifaximin/Zaxine 550mg 3x/day. I knew to expect success or failure (or both) in equal measure…I guess I didn’t anticipate more symptoms DURING the course of meds. Periods of intense nausea and mild D over the last few days. Also gas and mild-moderate cramping. Hard to separate from my usual symptoms, because nausea has been my primary issue, though D has not. However I suppose gas has somewhat improved from before. Getting the trots scares me...for no better reason than what I suppose many of us have to think: whether it signals a flare-up of inflammation, etc. I’m disappointed that things aren’t magically better having begun the antibiotic treatment, though I am trying to keep in mind that of course antibiotic-associated D is most definitely a thing, and more generally, the fairly high dose of this drug is certainly blowing away all the good bacteria with the bad. I know that I need to wait till the meds are done and things settle to see if this treatment did anything; if bacterial overgrowth is indeed a prime mover in my situation. But it’s frustrating that the interim sucks, and the 4 days remaining on the drug are going to go slowly. Anyone else go through antibiotic/sibo therapy lately? I could use a head-nod for the above. Thanks for your time, and best wishes, J
  8. Thanks @LauraTX, @squirmingitch had recommended them before, and finally I've just joined up. I'll see about collaborating with them.
  9. jddh

    "Pre-Celiac" & scared

    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 villous damage, so I would imagine your doctor must be necessarily a bit vague about whether you might have "inactive" or "active" celiac disease. The gold standard is to get a biopsy while still eating gluten, and then another after being on a gluten-free diet for some time, to assess whether you heal without gluten in your system. Positive genes and blood work, AND villous atrophy would seem like fairly strong evidence, but that's up to your doctor to determine. If you feel comfortable sharing your test results on the forum, some folks here can give you their two cents. But listen to your doctor! Glutenease might help your digestion, but if you have an autoimmune reaction to gluten, it won't prevent the possible damage that comes with gluten mistakes. Research on l-glutamine is somewhat supportive for healing, but it's not a panacea. You will read about various levels of sensitivity and prudence here and elsewhere. Eventually you'll come up with a plan that you consider is "safe," but hopefully will still let you get out in the world. Read up on gluten-free groceries and how to deal with restaurants safely, and you ought to be able to find a happy "middle-path" between prudence and paranoia. I'm one of the fairly sensitive/paranoid types at this point in my life. I personally don't worry too much about possibly breathing in gluten, but on the other hand I wouldn't eat anything that's been out where flour is in the air. Nor would I use a shared toaster or fryer. Again, it's important that you form a lifestyle approach that is informed about the risks but still a good life! Most importantly, work with your medical team to determine if you in fact have celiac disease.
  10. @cyclinglady—so glad to hear you're on the mend!! That's encouraging.
  11. 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. https://www.elisa-tek.com/testing-services/ http://www.glutenfreedietitian.com/gluten-testing/
  12. 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.
  13. Well it might have affected my biopsy, in any case it wasn't squeaky clean... Updated my long story here if you're interested.
  14. 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 like I've been eating gluten. Very frustrating. I have some doubts that a single glutening a number of weeks prior could cause that much inflammatory change on pathology. But I really am not qualified to say. Doctor said make sure I'm strictly gluten-free moving forward, and I'll get tested again 6-8 months from now. I'm relieved that I don't have any relatively serious abnormalities on pathology, but the inflammation is vexing. I was really looking forward to not having another scope and testing coming up. As ever, as I guess many of us often are, I need to ask myself the question: could I still be screwing up my diet on a regular basis!? I'm rather doubtful. But of course I'm going over it all again. I'm also going to do a FODMAP restriction for a couple weeks in order to see if that could possibly help my symptoms. I really don't know if my symptoms have any direct relationship with the inflammation, and as far as I know, there's no scientific evidence for any other protein being a known trigger for an immune response for a weird subset of us folks. But I'm willing to try anything to feel better.
  15. 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-contamination.