Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Struggling with Rifaximin

jddh

Recommended Posts

jddh Contributor
jddh
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

My son, not a Celiac, always has nausea, diarrhea, etc with antibiotics.  He was a mess when he had septicemia and was on high doses of 2 different ones.  I think that may be normal.  Not pleasant..... But normal.  

manasota Explorer
manasota
Posted

Nausea, vomiting, diarrhea can happen with any oral medication.  I wouldn't worry unless the diarrhea becomes very severe.  If that happens, you should call your doc immediately. 

I had 2 courses of rifaximin last winter (6 years gluten free).  I did not suffer any of the above-mentioned symptoms.  People are different.  I thought the rifaximin helped....and then didn't.  I've still got beachball belly.  

Hopefully, the rifaximin will be your cure!  It must work for somebody.  Hopefully, you will be one of the somebody's.

PamelaB Newbie
PamelaB
Posted
On July 7, 2016 at 6:16 PM, jddh said:

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

Hi J, I am challenged with both Celiac Disease and SIBO so I can understand your concerns. I have been on many courses of Rifaximin with Neomycin to get rid of the bacteria and what you are experiencing is par for the course. You may find that at the half way point you seem extra bloated then it just disappears. All the side effects from the drugs will end once the treatment ends and actually get better towards the end of your cycle of meds. 

But you do know that once diagnosed with SIBO it can always flare up. There is no cure for it, only a management of symptoms through diet. To keep the bacteria eliminated in your system you have to stick to a strict SIBO diet. I hope your GI doc has talked to you about this. I adhere to both a very strict gluten free and SIBO diet and still deal with bacteria overgrowth on occasion. 

Hopefully these meds will do the trick for you and you have a good medical support system, who knows their stuff. 

jddh Contributor
jddh
Posted
  • Author

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.

  • 1 month later...
ironictruth Proficient
ironictruth
Posted

My endo just put me on this, but also a very strong probiotic. Innate i think it is called. Did they suggest a probiotic? 

  • 2 weeks later...
gilligan Enthusiast
gilligan
Posted

The side effects of Rifaxamen include digestive distress.  I was on two rounds of it for SIBO a few years ago. I haven't had any recurring problems with SIBO since then, and I don't eat any special diet other than gluten free, and of course, healthy foods.  I think it's a wonder drug after the issues I experienced with SIBO!  Hopefully, it will turn around for you.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jddh Contributor
jddh
Posted
  • Author

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

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.