How My Doctor “Cured” My SIBO (For Now, At Least)

Last week I wrote a blog post about my recent diagnosis of SIBO (Small Intestinal Bacterial Overgrowth), which is a gnarly stomach disorder that may be the root cause for up to 80% of IBS sufferers. I’m happy to report that, after a couple months of treatment, I’m now able to eat EVERYTHING except wheat and dairy. This may not sound like much of a victory to any Digestively Normal readers (actually, I’m not sure I have any Digestively Normal readers; and if I do, man, this must be a really boring blog for you). But considering that for the past few years I haven’t been able to tolerate beans, garlic, onions, coconut milk, cruciferous vegetables, or any other high-FODMAP foods (complete list of high- and low-FODMAP foods here), I am ELATED with my broadened diet.

How did I get “cured”? Well, SIBO is notoriously difficult to cure – it often comes back. I’ll talk more about that later. But here’s how I’ve arrived at my much-improved condition.

Immediately following the diagnosis, my functional medicine doctor prescribed a potent cocktail of herbal antimicrobials. Rather than list them all here, I’ll just show you what I was taking:

I took those antimicrobials for a month, during which I experienced pretty extreme and consistent bloating and pain, as well as reduced motility. It was not a fun month. Maybe I should’ve stopped taking them after the first few days, but I’m pretty desperate for a “cure,” so I soldiered miserably through the month.

After the month, my doc told me that the pain I was experiencing could be due simply to inflammatory reactions to the meds. He said that we wouldn’t know if they’d worked until I got the inflammation under control. So he took me off the antimicrobials and put me on some herbal anti-inflammatory meds, and lo and behold, after about a week, I found that I was able to tolerate a MUCH greater variety of foods. I was eating onions and garlic for the first time in years, and only experiencing very minor bloating and pain. I even traveled to Vietnam and ate baguettes (like, made from WHEAT), and I was like, hallelujah, god bless me, bread and I are back together.

But then I got home from Vietnam and ate seven Ritz crackers and was knocked on my ass for two days with symptoms ranging from crushing lethargy (i.e. I couldn’t get off the couch) to intense brain fog to behind-bathroom-doors symptoms that nobody here wants to read about. Sooo, I trotted back to the doc, who explained to me that the wheat that’s grown overseas is much different from the wheat that’s grown in the U.S. (all of which is hybridized). Apparently, overseas wheat is much easier to digest, which I don't yet entirely understand (and I will try to get more info about this STAT). But I can now verify this phenomenon as a true fact based on my personal experience.

After the Ritz Cracker Incident, my doc put me on a two-week course of SIBO-eating antibiotics (Rifaximin and Neomycin), and during those two weeks I felt like a million bucks. I ate anything I wanted other than bread and dairy, and experienced zero bloating or pain. Zilch. This is, for me, revolutionary. I've gained about 5 pounds in the last couple weeks eating coconut milk ice cream and rice pasta with REAL marinara sauce (i.e. loaded with onions and garlic) and hummus and other stuff that I haven’t eaten for years. I even ate Chinese food made with soy sauce, which has traces of wheat in it, and didn’t feel too bad afterward. 

I've now been off the antibiotics for 2 weeks and I'm still eating a helluva lot more foods than I used to.

So, am I “cured”? Well, there’s a pretty decent chance that the SIBO may come raging back. So I’m now on a pretty extensive protocol of maintenance meds (mainly herbal) for the next couple of months to try to make sure that I avoid relapse. Also, I still can’t eat wheat and dairy, but I’m actually allergic to dairy, so that’ll never change. And I have high hopes that my relationship with wheat may continue to improve with time.

I’ll write about the post-SIBO-treatment protocol next time. For now, this blog is already long, and if you’re still with me, it means that you’re suffering in the same ways that I have for the last 7 years, and my heart goes out to you! Get tested for SIBO!

xo

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!