My Story Part 2: I Get Diagnosed with Small Intestinal Bacterial Overgrowth (SIBO)

In Part 1, I explained how I developed SIBO and IBS from food poisoning picked up on a trip to Egypt. I left off in 2009, when an IBS expert at UCLA diagnosed me with post-infectious IBS and sent me on my way with zero answers.

Nine years go by…

For the next nine years, I did not visit a single doctor for my IBS. I mentioned it to doctors in passing, but none provided any insight. Instead, I tried a host of supplements, remedies, and diets, trying to find something that helped. I saw a psychologist in Los Angeles who specialized in treating IBS patients with cognitive behavioral therapy. Cognitive behavioral therapy has been shown to help reduce IBS symptoms and improve patients’ quality of life. It did not really reduce my symptoms, but it did help me deal with them better. As the years passed, my symptoms did get a little less intense, but never went away. The longest streak I had with almost no symptoms in these nine years was three weeks. This three week streak happened after I had taken an antibiotic for an unrelated reason—a clue that I didn’t realize at the time.

Life went on, and I graduated law school and got a job. In many ways, I’m extremely lucky that my SIBO and IBS was never severe enough to hold me back in major ways. More days were better than not, and I managed to travel and achieve many of the things I wanted to. Only a very few people knew that I suffered regular digestive upset. In fact, I didn’t tell anyone other than my best friend, my parents, and my sister about the extent and chronic nature of my issues.

But even my relatively mild IBS affected me greatly. I constantly worried that I would be forced to make multiple bathroom trips in an awkward situation, or that I’d get stuck on the train where there are no restrooms, or that I would have to cancel plans. Many events that should have been enjoyable were mostly spent stressing out whether my stomach would rebel, or pretending to be having a great time when it felt as though someone was stabbing me in the stomach. Needless to say, it also affected my relationships. It’s hard to explain what having SIBO and IBS is like because it is so much more than a physical problem. It impacts your entire life: what you eat, where you go, who you spend lots of time around, your mood, your travel, and so much more. I could go on, but I digress…

I decide to try the low-FODMAP diet

Back to my story. It’s now the fall of 2017. One of my very good friends had developed IBS a few months prior, and we chatted about it somewhat regularly. She encouraged my to try the low-FODMAP diet, as it helped her identify some of her IBS triggers. I hadn’t heard of this diet, but I did my research and decided to give it a go. She also mentioned that her doctor wanted to test her for something called SIBO, which I recalled seeing on one of my semi-regular google searches for new IBS treatments.

So I embarked on the low-FODMAP diet. I intended to follow it strictly for four weeks and see how I felt. By the end of week four, I noticed that I had less gas (and had lost weight), but otherwise felt much the same. But instead of stopping the diet, because I had already put so much into following it for a month, I decided to consult a naturopath before giving up.

The Naturopath: sort of helpful

Unfortunately, the naturopath I saw didn’t have many answers. He blamed my use of Imodium and an over-sensitive gut for my problems. But he couldn’t explain what caused that sensitivity or offer any explanation of how stopping Imodium would stop the problem that I had started taking it for in the first place.

However, the naturopath did do one somewhat useful thing: order a Genova GI Effects Stool test. This comprehensive test looks at a number of different markers of gut health including bacteria, inflammation, pathogens, and more. When the results came back in, they were mostly unremarkable save for my Secretory Immunoglobulin A (sIgA). My SIgA values came in higher than normal, which can apparently be a sign of an activated immune system and inflammation in the gut.

Now usually when I get back results from a medical test, I want to hear that everything is normal. In this case though, I found myself strangely excited. I’d had SO many digestive-related tests, none of which suggested anything amiss. To finally have an objective(ish) medical test reflect the way I’d felt for the past decade gave me a sense of vindication. I wanted to go wave it in front of all those over the years had said or implied that IBS is caused by stress or anxiety and that it’s “all in your head.”

Armed with this test result, you might think I returned to the naturopath and we figured out a holistic treatment and I rode off into the sunset to happily eat whatever I wanted…sadly, no.

Instead, I get an MD

I had the test results from the naturopath, but I didn’t trust him after his suggestions. Given that I had an actual test result suggesting abnormalities, I decided to get thee to an MD.

Two major hospital systems in the Bay Area have speciality gastroenterology clinics. I started off by calling Sutter Health’s Neurogastroenterology and Motility Testing Clinic and asked to see a gastroenterologist there. I hadn’t done any real research about what the individual doctors specialized in there, because I wasn’t quite sure what my issue really even was. In an extreme stroke of good luck, the gastroenterologist I ended up seeing trained at Cedars-Sinai Hospital in Los Angeles under the SIBO and IBS expert, Dr. Mark Pimentel.

When I sat down with my doctor, I felt what can only be described as a great sense of relief. After I told him the general outline of my story, he told me that it sounded like all my so-called IBS symptoms sounded like SIBO. For example, why I could never really identify any food-related triggers, or why the three weeks I’d had with minimal symptoms were due to the antibiotics I had taken right before. To be honest, it felt amazing to have a doctor believe me, explain the problem, and tell me it had a physical origin. SIBO and IBS, especially post-infectious IBS, go hand in hand. In fact, most IBS can be attributed to actually being undiagnosed SIBO.

I get a Hydrogen and Methane Breath Test and finally, a diagnosis

The doctor wanted to confirm his suspicions with a hydrogen and methane breath test. This is where you fast for 12 hours, then drink a cup of lactulose solution and breath into some tubes for the next 3 hours. A week or so later the nurse called to tell me that mine had tested positive for SIBO. I got the diagnosis right before I headed out of town for Christmas, and all Christmas break I would catch myself thinking, wow! A real diagnosis!

Over the holiday, I began furiously researching the next step: treating the damn thing. I did feel better knowing that my SIBO and IBS had an actual cause. But I also learned that treating SIBO can be extremely challenging and that in two-thirds of cases, it is a chronic condition. When I returned from my holiday break, I planned to begin treatment with Rifaximin and Neomycin.

Stay tuned for Part 3, where I detail the SIBO treatment I underwent with Rifaximin (generic Xifaxan), Neomycin, partially hydrolyzed guar gum, and a low-FODMAP diet.