I don’t think I’ve ever wanted to visit the hospital so badly as I did last month.

Before the age of 8, I was sick off and on for several years and was in and out of the hospital for various tests. While the early childhood hospital stays initially made me brave, by the time I was 10, I was scared of even going to the doctor for a routine check up. I’d had my fill of doctor visits and hospital tests.

Fast forward more than 20 years to the summer of 2014. After trying to resolve my digestive health issues with the GAPS diet, I found that I was still suffering on a daily basis from pain, discomfort, bloating, and very visible distension. I learned that a persistence of symptoms even on a clean diet could indicate fairly serious but treatable conditions. As Chris Kresser, one of my faves in the health and wellness space, likes to say “test, don’t guess” — so I decided to start working with a functional medicine doctor who could help me order the tests I needed to identify, treat, and heal the underlying causes of my chronic digestive distress.

One of the tests I most wanted to run was the hydrogen breath test, noted by many as the “gold standard” test for diagnosing small intestinal bacterial overgrowth (SIBO). While many GI health issues have overlapping symptoms, I was fairly positive that I had SIBO, and after getting to know me and monitoring my behaviors and symptoms for a couple of months, my doctors thought there was a strong possibility too.

In the hydrogen breath test, a patient consumes a sugary solution. If there is an overgrowth of bacteria in the small intestines, the bacteria will feed on these sugars and then produce hydrogen and/or methane, which can be measured through the breath. Sounds like fun, right?!

What I didn’t expect from the test — the emotional element

Once we found that the local hospital offers the test, my doctor sent in a request to schedule it. I anticipated I’d have to wait a couple of weeks to been seen. Instead, I learned the hospital didn’t have an opening in their schedule for another 2.5 months.

It was difficult waiting for the test, especially during the Thanksgiving, Christmas, and New Years holidays. I just wanted to know whether or not SIBO was a contributing factor to my health problems so I could keep moving forward on this journey to wellness. But as much as I wanted the test, I almost cancelled it four or five times in the three weeks leading up to the date. While the hydrogen breath test IS the gold standard for diagnosing SIBO, it’s not perfect, and I’d read stories about false negatives. I started doubting myself and the process, questioning why I was spending money on an imperfect test to look for something I may not even have. After days of wrestling with unexpected stress over a test I had wanted so badly for over half a year, I finally decided to move forward. Better to make decisions based on data versus guess work.

I think I was also nervous about the test because while I expected (and wanted) it to be positive (I’d have something specific to treat!), I also dreaded the side effects I’d no doubt experience during the test and possibly for days afterward. The side effects? Those all-too-familiar painful, uncomfortable symptoms I experience on my worst days. I’d never willingly bring those on except for in a test that could help me determine the next best course of action.

Hydrogen breath test instructions from the hospital

Shortly after scheduling the test, I received a letter from the hospital with pre-test instructions.

My hydrogen breath test experience

On an overcast, gloomy Monday morning, I drove to the local hospital and arrived 45 minutes before my appointment. I’m glad I did! The hospital had my maiden name only on my official record. The fax machine wouldn’t send a copy of my driver’s license to the department that could update my record. The insurance card scanner wasn’t reading my card properly. It was a Monday morning.

As the waiting room filled up, I tried to relax and ignore the butterflies.

Right on time, a nurse called my name and took me back to a private, comfortable room where I’d spend the next few hours. And right away, she showed me the hydrogen breath test kit.

Every 20 minutes, I would need to inhale normally and then exhale normally, breathing out and into the mouth piece shown above. I was to exhale until I couldn’t any more. The small collection bag would inflate with my breath. Then, I would need to remove a sample of that breath with a plastic syringe, which has a component I could turn to “lock” in the breath sample.

First, we took a sample of my breath to identify a baseline that future samples would be compared to. This also serves as a practice run to show the nurse you know how to handle the rest of the test, as it’s largely self-administered.

After the baseline breath sample was taken, I consumed a lemon-flavored sugar-packed drink. I’d read that the hydrogen breath test may use a lactulose or glucose solution, and the nurse said that my drink contained dextrose, which is a form of glucose. I came into the test with the intention of asking for the ingredients and taking a picture of the bottle, but once I stepped into the test room, I completely forgot about it, other than to jot down the mention of dextrose!

Since I’d need to take samples every 20 minutes, the collection tubes/syringes were all pre-labeled.

While I waited to take my first sample, the nurse asked me to monitor and share any symptoms I may experience, mentioning that in addition to typical GI side effects, headaches were also quite common.

It’s been 7-8 months since I’ve consumed that much sugar at once, and I initially felt slightly jittery from head to toe while the sugar rushed through my system. My throat also felt a little raw, as if I’d been yelling and cheering at a sporting event the day before.

Every 18 minutes (I was given a timer to help me accurately keep track!), I eased the next syringe into the nozzle on the collection bag. I took a breath in, exhaled all of the breath into the bag through the mouth piece, and then pulled up on the syringe pump. To lock in the sample, I turned a small dial 90 degrees before removing the syringe from the bag. Then it was time to reset the timer to 18 minutes. Too easy.

Below is syringe 6, ready to be analyzed, and syringe 7, waiting to be used in 18 minutes.

Between samples, the nurse said I could stay in the room or walk around the hospital lobby as long as I brought the timer with me. I didn’t expected I’d be encouraged to get up and move, so I opted to leave the testing center and walk on three occasions. I brought more than enough reading material to keep me company, but all I managed was a few pages.

Every 2-3 samples, the nurse returned to ask about changes in symptoms and add the collected breath samples to these machines. They instantly measured the amount of hydrogen and methane in each sample.

Toward the end of the test, the nurse started comparing these readings to the baseline. She shared that based on the numbers, it wasn’t likely that I had SIBO. At that stage, I wasn’t surprised.

What I least expected from the hydrogen breath test

As soon as I left the hospital, several people checked in on me to learn how it had gone. I found myself sharing the same message with everyone — it perfectly described how I felt.

I’m home from the hospital. The test went very well. Like suspiciously well. Other than feeling jittery from the sugar, I felt normal from start to finish with none of bad symptoms I was expecting. Nurse thinks readings look normal. Relieved to feel fairly normal (I thought I would be miserable all week!!!) and also sad/disappointed that the results will most likely be negative as I was 90% sure this would be it and I would finally have a diagnosis. I was positive SIBO was one of the problems. I just wanted to finally have a diagnosis because there are protocols to treat it. Now what…? Oh well, guess I’ll see what happens at the next doc appt in mid-February!

Words cannot express how shocked, pleased, and disappointed I felt at all once.

It was a blessing to breeze through the test with no pain, discomfort, or other negative symptoms. What was even better was that I didn’t spend the next few days in agony. Once something triggers my symptoms, it usually takes a full week before I might have a good day again.

And though I felt oh-so-grateful for feeling well during and after the fact, I couldn’t escape feelings of disappointment. Nothing had happened. Not a hint of bloating. Not a whisper of discomfort. Not a single sign that suggested, “hey, this might be SIBO after all!”

I felt a little silly for thinking it could be SIBO for the better part of a year. I felt let down that my body didn’t respond as I expected it to do. I felt ridiculous for feeling disappointed. I wondered how much this test was going to cost.

I spent the next few days assuming that I didn’t have SIBO. My new doctor once said that I was the “perfect storm” and probably have multiple things going on that will take some time to figure out. People have always said I’m an overachiever, and it looks like it’s no different with my gut health — THE PERFECT STORM!

When I met with my doctor in mid-February, he shared that the test results were indeed negative. After revisiting the differences in the glucose and lactulose drinks, I wonder if the glucose test was the right one for me. Dr. Allison Siebecker, considered by many as THE expert on all things SIBO, shares an important distinction between the two on her website — each type of drink solution best measures overgrowth in different parts of the small intestines! With that in mind, I’m not 100% ready to rule out the possibility of SIBO.

So what’s next?

I need to continue to pray about my health and have faith in the functional medicine process. I need to maintain the positive outlook and attitude I’ve had 90% of the time and allow myself the 10% where I wrestle with the mental and emotional toll that comes along with chronic health concerns.

If you found this page because you’re thinking about the hydrogen breath test but can’t find a place that administers it, Dr. Siebecker has shared a list of at-home test kits to consider.

Have you taken the hydrogen breath test? Was your experience different to mine? I’d love to hear your story. Let’s support one another on our road to wellness.