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jddh posted a topic in Post Diagnosis, Recovery & Treatment of Celiac DiseaseHi 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
I have been as gluten-free as possible (living in a mixed household, have my own cookware) since my negative biopsy 16 months ago. Ever since the gluten trial I did beforehand I am intolerant of almost everything but especially grains. I eat about as well as can be expected. I'm on a kind of paleo I guess, all meat and vegetables and small servings of fruit, except with my food problems my meal plan tends to be breakfast: chicken with spinach, lunch: chicken with kale, dinner: chicken with carrots, heavily supplemented with bananas throughout the day. Shampoo, rinse, repeat. Sometimes I sneak some egg whites into the mix, sometimes I can't stomach the thought of more chicken so I just have the vegetables. Sometimes I just don't bother to eat at all. Things are definitely better than they were when I was eating gluten, but still bad. I keep losing foods, I'm bloated and nauseous, I have extremely bad gas and unpredictable, foul BMs that lean more towards constipated. I just feel generally unwell and I'm not sure why I'm not getting better. The last gastro I saw put me on rifaximin to see if it was some kind of bacterial overgrowth. I'm on day 9 (of 14) of the rifaximin, and it has worked in unexpected ways. I have less gas, and when I do have it it no longer smells like it could kill a man. Same with BMs. It also put an end to the maddening throat pressure I was having that I assumed was some kind of reflux. While my rosacea is still pink and flushy, the skin puffiness has reduced so much I look like a different person, and my skin has lost the orange peel texture. My ocular rosacea is no longer permanent, it shows up sporadically and generally goes away with eye drops. The skin on my body is less dry, bumpy and blotchy. My feet and hands no longer constantly glow bright red. The hollow, severely purple undereye circles I've sported for years have also started to improve drastically and my hair and nails are stronger and shinier. It took about three days of feeling weird and adjusting, but I noticed for a few days that my stomach felt a lot better, less 'full' feeling, especially just after I'd taken the pill. Not miraculously so, but I had really high hopes. Unfortunately, I made the horrible decision to try out (gluten-free) grains again a few days ago after reading on a forum that the rifaximin needed higher carbs and sugar to draw out the bacteria. And after all, if I wanted to permanently incorporate them into my diet, why shouldn't I get started while my system had a boost? It was a bad call and I knew it, I was just so desperate for real food that I threw caution to the wind. It immediately triggered my binge eating (which I haven't struggled with at all since going grain free) so I went into grain overload. I felt the way I did when I was doing the gluten trial- extremely foggy, confused, lethargic, achy, and bloated to the point I was in so much discomfort I thought I could die. At least I didn't throw up this time. It was the worst I'd felt in ages and it took me 3 days to get off of them again. I'm horrified with myself and I think I've caused some damage. Worst of all, I think what I've done has set me back too far for the rifaximin to handle. I'm back to eating my usual but I keep feeling really ill, like it's undoing everything that's improved since I started taking it. I'm so scared. I know that if this course ends and I'm not cured, my gastro will immediately move on to "see, you have IBS! let's get you on some antidepressants". She said as much last time we met, the rifaximin was a last ditch effort. I just feel so lost.
Jefferson Adams posted an article in Celiac Disease Diagnosis, Testing & TreatmentCeliac.com 12/27/2011 - Non-controlled studies suggest that Rifaximin may improve celiacdisease symptoms in such cases. However, up to now, no controlledtrials have been conducted. A team of researchers used a double-blind clinical trial to assess the effectiveness of rifaximin in relieving gastrointestinal symptoms in patients with poorly responsive celiac disease. They also assessed the effects of rifaximin on lactulose-hydrogen breath tests in those patients. The research team included Matthew S. Chang, Maria T. Minaya, Jianfeng Cheng, Bradley A. Connor, Suzanne K. Lewis, and Peter H. R. Green. Small intestinal bacterial overgrowth (SIBO) is one of the main reasons that certain people with celiac disease fail to respond well to a gluten-free diet, and why they often suffer persistent symptoms. To make their assessment, the team designed a single-center, double-blind, randomized, controlled trial of patients with biopsy-proven celiac disease and persistent gastrointestinal symptoms despite following a gluten-free diet. For the trial, the team 25 randomly assigned patients received a placebo, while the other 25 received rifaximin (n = 25) 1,200 mg daily for 10 days. For each patient, the team then used the Gastrointestinal Symptom Rating Scale (GSRS) and administered lactulose-hydrogen breath tests at weeks 0, 2, and 12. The team defined an abnormal breath test as showing either: (1) a rise in hydrogen of C20 parts per million (ppm) within 100 min, or (2) two peaks C20 ppm over baseline. They found that rifaximin had no effect on GSRS scores, regardless of baseline breath tests. Using a multivariable regression model, they found that the length of a patient's gastrointestinal symptoms significantly predicted overall GSRS scores (estimate 0.029, p.006). According to criteria 1 and 2, respectively, SIBO was present in 55 and 8% of patients at baseline, intermittently present in 28 and 20% given placebo, and 28 and 12% given rifaximin. Results showed no difference SIBO rates between placebo and treatment groups at weeks 2 and 12. From their study, the team concludes that rifaximin does not improve gastrointestinal symptoms, and that hydrogen breath tests do not reliably show which patients will respond favorably to antibiotic therapy. Source: Dig Dis Sci (2011) 56:2939–2946