Finally, After Seven Years, A Diagnosis For My Gut Problems: SIBO

If you have IBS, and you don't know what's causing it, you might wanted to get tested for SIBO (Small Intestine Bacterial Overgrowth). What's SIBO? I'll tell you in a minute. But first, I'll summarize my circuitous and frustrating journey toward getting a diagnosis:

I’ve suffered with stomach issues for years. I've had chronic painful bloating and various other symptoms that range daily from curl-up-in-fetal-position-debilitating to mildly annoying. More than one gastrointestinal doctor has tested me for various things, only to tell me that I have “IBS,” which is a meaningless and unhelpful non-diagnosis. And since it’s meaningless, there’s no way to treat it. One doctor told me to “eat some fiber every day, but not too much fiber, because that’ll just cause more pain, good luck!” Another told me to take an antidepressant that would numb my pain sensations. Seriously.

I got so desperate at one point that I actually took the antidepressant for two days, and… (drum roll, please)… it made me depressed. And it increased my pain. And it made me nauseated. So I kicked that pill to the curb.

The only thing that’s helped me has been a low-FODMAP diet, which eliminates the most difficult-to-digest carbohydrates (FermentableOligosaccharides, Disaccharides, Monosaccharides and Polyols). But if you can’t tolerate FODMAPs, you can’t eat onions, garlic, beans, or a zillion otherthings, which means it’s virtually impossible to eat food prepared by anyone but yourself. Eating out becomes the opposite of fun. 

My incredible nutritionist Sarah Kennedy surmised that I had SIBO (Small Intestine Bacterial Overgrowth). SIBO is a chronic bacterial infection of the small intestine that causes bloating, cramping, diarrhea and/or constipation.  The excess bacteria in the gut interfere with the absorption of food, increasing gas production, decreasing fat absorption, and leading to a further proliferation of bacteria. SIBO can be caused by many things, including celiac or Crohn’s disease, chronic constipation, or any episode that disrupts gut flora and damages the gut, such as traveler’s diarrhea. Some doctors estimate that SIBO may be the root cause for up to 80% of IBS sufferers.

I told my GI doctor that my nutritionist suspected that I had SIBO, and the doc scheduled an appointment to test for it. The day of the test, however, I discovered that although my insurance technically “covered” the test, my co-pay was going to be $300. My doctor advised that I could buy the test from Commonwealth Laboratories and do it myself at home for only $200. It’s an easy breath test (for 3 hours you breathe into a tube every 15 minutes) so I did it myself, and the test came back negative. Sarah and I were both mystified, since my profile fit SIBO pretty perfectly.

Fast forward two years, and my digestive woes were so debilitating that I decide to pay out-of-pocket to see a Functional Medicine doctor who specializes in IBS (why my insurance won’t cover this kind of doctor is another rant for another day). Unlike previous doctors, this one spent an hour asking questions about my digestive history before making any recommendations. When I told him that I could pinpoint the year in which my symptoms appeared (2008), he felt certain that there was a “foreign actor upon my system” (i.e. I picked up some bad bacteria or a virus somewhere). He asked if I’d had a notable stomach illness within the year prior to the onset of symptoms, and I said, yep, I had a gnarly water-borne stomach bug in Guatemala in 2007. Bingo, he said – your system was infiltrated by something in Guatemala, and it’s still wreaking havoc today. He did a battery of (very expensive) tests, including a re-test for SIBO. He told me that Commonwealth Labs delivers notoriously inaccurate results, and I should use a better testing center.

Lo and behold, the SIBO test delivered a STRONG positive. It is wildly empowering to have a diagnosis, and to finally understand what has turned my gut upside-down. A bit of a bummer that I could’ve/should’ve received this diagnosis TWO YEARS ago, had Commonwealth Labs gotten it right. But no matter.

Here’s the good news: there’s a treatment for SIBO. It doesn’t work for 100% of patients, but it does work for a substantial portion of them. I’m in the midst of the treatment now and I already feel vastly better, for the first time in 7 years. Of course, it remains to be seen what I feel like when I'm finished with the meds. I’ll blog about the treatment options and outcomes later, but in the meantime: if you suffer from IBS and your doctors have been unable to determine the cause of your suffering, consider getting tested for SIBO. And don’t use Commonwealth Labs; use Sibocenter. G’luck!