My Journey with SIBO

SIBO? IBS? What are they? Why do we use acronyms to describe them?

SIBO and IBS are digestive conditions.  IBS is estimated to plague approximately 20 percent of Americans (to varying degrees), yet, like many other people in the non-medical community, I had not heard of this condition until I was diagnosed three years ago.  I scheduled an appointment with a gastroenterologist for my abdominal pain, excessive gas, atypical bowel patterns, and itchy skin that kept me up at night.  The doctor told me that I had Irritable Bowel Syndrome (IBS).  She said that it was not curable and that I would just have to learn to live with it.  First, she recommended eliminating dairy.  This seemed to ease my symptoms initially, but as time went on, my symptoms worsened and I returned for another appointment.  I was frustrated.  I was embarrassed.  I didn’t want to be controlled by my digestive disorder.  I just wanted to feel young and healthy like a normal twenty-year-old college student should.  At my second appointment, the gastroenterologist showed up 45 minutes late, saw me for five minutes, and prescribed me a colon relaxer (after I told her that I did not want to take any prescriptions).  It was at this point that I utterly gave up on the Western medical model.

Luckily, I did not give up on my goal to become healthy.  And fortunately, I found a medical model that matched my goal to figure out the root cause of the problem and not just cover up the symptoms: naturopathic medicine.  A simple Google search led me to the amazing Dr. Erika Siegel.  She is a compassionate listener and attentive naturopathic doctor who gave me the hope and support I needed to keep striving for optimal health amidst many setbacks.  Over the past year that I have been visiting Dr. Siegel for bi-weekly or monthly appointments, my symptoms have improved dramatically (from a “10” one year ago down to a “5” (on a 1-10 best to worst scale)).  Sometimes it is difficult to remember how much progress I have made because there is still so much more progress that lies ahead.

About four months ago (shortly after NCNM’s first SIBO symposium), Dr. Siegel introduced me to the idea that I may have Small Intestine Bacterial Overgrowth (SIBO) and she recommended testing.  This next statement may seem odd, but I was ECSTATIC the day that I learned I tested positive for SIBO.  Why?  Finally, I was being told that what I had could be cured.  I would not have to suffer for the rest of my life.  The results indicated that I was suffering from SIBO induced IBS (too many bacteria that were supposed to be in my large intestine had traveled into my small intestine and were causing me all of this agony).

Moving forward, Dr. Siegel has referred me to Dr. Keller in order to utilize her expertise and personal experience with SIBO to ensure continued progress.  My first appointment with Dr. Keller reminded me how important sharing knowledge of personal experiences will be to creating a society that is no longer plagued by embarrassing, silencing, digestive discomfort.

Now to my final question: why do we use acronyms?  My theory is that the reason we use acronyms such as IBS and SIBO is that they are a little less embarrassing than telling people you have “small intestine bacterial overgrowth” or “irritable bowel syndrome”.  These terms do not exactly ring like wind chimes.  But why is our society so afraid of talking about poop?  I laugh every time I think of my little sister Amina’s response when the doctor asked her about poop.  We took her to see Dr. Erica Peirson, a wonderful naturopath who specializes in Down Syndrome.  In Amina’s comprehensive new patient examination, Dr. Peirson said to Amina: “so tell me about your poop”.  The look on Amina’s face and accompanying “Pooooop???” remark led everyone in the room to burst into laughter.  Our society teaches children from a young age (“no potty talk”) that it is completely taboo to talk about our bowels. Yet, there is so much to learn from paying attention to this oh-so-important and oh-so-natural indicator of health.  If I had known from a young age that it was not normal to go two or three days without a bowel movement, I could have saved countless time and money.  I would have seen a naturopath when my gut flora imbalance first appeared as embarrassing acne in high school.

But there is no reason to dwell on the past.  In a weird way, I am grateful that I have had to struggle with SIBO at a young age because my journey with SIBO has provided me with the ability to help others recover from chronic illness.  My goal is to make it easy for busy people to heal by providing them access to meal plans, grocery lists, cooking lessons, and more that I had to spend hours of self-study learning about because there were not enough trained individuals to help make my journey feasible with my career.

14 thoughts on “My Journey with SIBO

  1. Thank you for your wonderful blog and your willingness to help others. I, too, was dx’d with SIBO back in early March (after having terrible bloating and stomach pain all night long for 2 months). I had to ask my doctor if it was SIBO (after researching symptoms online). Also, I asked to be tested for Lyme’s but he & I had a difference of opinion on what lab to send it to. Finally, I found a local MD who is also a Naturopathic doctor and have been tested for Lyme’s & I have it. It attacked my digestive system. Have been eating low FODmaps ever since and have had improvement. Also, had to go on 2 months of antibiotics for Lyme but now just treating with herbal therapies. Thankfully, I am feeling better but not out of the woods yet. I hope to beat SIBO/Lyme’s but the future is in God’s hands. I am doing all I can think of to fight it!!

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  2. Does anyone suffer with joint and muscle pain associated with SIBO? I am testing this week with Dr Leonard Weinstock and like you guys I will be happy if I test positive so I can start treatment.

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  3. Riley,
    I am so happy I came across your blog! My jaw literally dropped open when I read about you having to numb your legs with ice packs, scratched your legs until they bled and had to take a benedryl to get to some sleep. It’s like you are describing what I go through on a regular basis!!!!! I was diagnosed with SIBO last week and I too was relieved to get my diagnosis (pretty strange to be happy about having a bacteria infection isn’t it?). I am so glad to know that there is hope. I am curious which course of treatment you took in terms of herbal supplements, etc. I eat very clean (aip diet prior to my diagnosis) and now a combo of the SCD diet and low FODMAP diet. I find that very starchy foods trigger a flare up. My naturopath had me on Metagenics Candibactin-BR ( I only took it for 4 days before I stopped) but I had more severe hives during those nights….so I’m thinking that maybe that supplement isn’t right for me? I don’t imagine that that is a die-off symptom but I’m not sure.
    Any feedback would be appreciated! Thanks for doing what you’re doing to help people like me 🙂

    Christine

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    • Hi Christine,

      My initial treatment involved two rounds of Rifaximin and then antimicrobials (a bit for berberine complex, but mostly just neem plus) for an extended period of time. Reducing the infection & following a strict diet improved the itching quite a bit- but it took time. Introducing a prokinetic (I have used several) also helped with the itching. Colostrum has been a miracle as well and also allowed me to introduce new foods without symptoms. I can also now tolerate probiotics which used to cause me to itch. I have never tried the Metagenics products, but I do like that there is a study comparing their efficacy to Rifaximin. I would think that it could be die-off if you only took it for 4 days, but you know your body best 🙂 Perhaps you are too sensitive for antimicrobials at this point? Some temporary solutions I used for the itching were Vit E oil, ice packs, and exercise (to get the blood flowing). I actually have a blog post in the works all about itching. I better finish it up so it can be posted! I hope this helps!

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      • Thank you so much for both your speedy reply and all of the info you shared, very much appreciated! I think I’m going to give the Biotics Research (FC-Cidal & Dysbiocide) a try and see. Did you have any die off symptoms? Also (one last question), which diet did you find most helpful? I know everyone is different..

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      • Hi Christine,

        Sorry for my not so speedy reply on this one! I am getting very close to the end of the term for school. I would recommend doing research on the ingredients in FC-Cidal and Dysbiocide to see what is out there. It is also good to know what you are getting yourself into 🙂 I did not have any die-off symptoms surprisingly. I found Aglaee Jacobs’ elimination diet in “Digestive Health with Real Food” to be the most helpful in terms of figuring out which foods were bothering me, but I ended up with severe nutrient deficiencies and lots of other problems by doing it for too long (I started getting symptoms even after just one week of strict diet). Now that I am in my nutrition program, I recognize the importance of trying to eat as many different, healthy foods as your body can possibly tolerate and to not let dietary restrictions take control of your life. There is a fine line between controlling symptoms and creating more problems.

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      • I have been eating lowfodmap aip for the last 3 months, with no big improvement. (And aip for a year before that) I can’t even eat spinach or kale without major bloating and stiffness in my fingers. I took a 2 hour SIBO breath test that showed negative, however I feel very strongly that I have SIBO. I have tried everything. I am feeling so hopeless. I have had stool testing done, no problems there. I have started taking some Apex brand herbal antibiotics that my doctor suggests, but I don’t have a lot of faith it will work. If you were me, would you insist on a 3 hour breath test before treating? And would you begin with Rifaxamin? I can’t even count how many doctors I’ve been to. This last one is a functional medicine practitioner, but even he is not very familiar with SIBO.

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      • Hi Kristy, I have a lot more questions than answers- I hope that’s okay! What was the solution you swallowed for your 2 hr breath test (ex: glucose, lactose, lactulose)? Also, did it test for hydrogen & methane or hydrogen only? What did your results look like in terms of was it zero all across or were there any peaks? Looking for an idea of the shape of the graph. Have you tried any overall digestive support or anti-inflammatory support (ex: betaine HCL, digestive enzymes, fish oil, ginger, turmeric, etc)? Have your symptoms worsened at all since beginning AIP/low FODMAP? Or have any new symptoms appeared? Or do you feel overall better? What foods do you notice that you react to?

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  4. I loved reading this. I had a very similar feeling when I got my diagnosis – I stayed up late, just reveling in this idea that I now have a straightforward (well, you know, KIND of…) path to healing. Thank you for your awesome website! So glad to have found you!

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  5. Thank you for sharing your story! It’s fantastic that this experience has resulted you in you pursuing healing, not only for yourself but for others through this blog & your plan to become a nutritional counsellor.

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  6. It is great that you are raising awareness about this issue. There are a number of diet and nutrition related issues that need greater understanding in our society. I am on the board of CampBlueSpruce.org, only the second sleep away camp in the US for kids with severe or life threatening food allergies or sensitivities. Thank you for increasing awareness and deciding to pursue nutrition as a profession. I know advocacy runs in the family!

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    • Maura,

      Thank you for your kind words! I just looked up CampBlueSpruce.org and it sounds like a great program for kids with food sensitivities. Hopefully visitors to my blog can pass on the word so that more kids can enjoy camp and know they won’t get sick from the food.

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