My first misdiagnosis was in 2007, at age 18, when I was diagnosed with irritable bowel syndrome (IBS) after dealing with digestive health struggles, including searing gas pains and constipation, for more than a year.
The GI appointment took a few quick minutes: The doctor briefly described IBS and sent me out the door with a long list of gas-producing foods to watch out for (called “FODMAPS” now).
I tried to pinpoint specific food triggers but had trouble teasing them apart—juggling this overwhelming guessing game with my rapidly evolving, young adult life. Bloating, constipation, cramping, and indigestion became more frequent and unbearable. I also developed other chronic ailments, such as a year-round postnasal drip with congestion.
This is my story—and it may sound eerily similar to your story too.More: Today I Start SIBO Treatment... and A Lot is Changing
I did my best to get by on the IBS diagnosis until 2013 when I saw the following doctors:
- GI Doc #2, who told me confusing things:
- “You don’t have fat malabsorption.” (though I noticed intense reactions to heavier foods like beef)
- “You probably have inflamed bowels.” (though I rarely experienced diarrhea)
- “Consume more fiber, and counteract the constipating fiber with Miralax.” (What?)
- An allergist, followed by two ENTs:
- They couldn’t define any allergens or other reasons for my over-reactive sinuses.
At this time, I tried multiple solutions, all of which failed, including:
- A low-FODMAP diet without clarity on how to eliminate and reintroduce foods, so I burned out with each attempt
- Several meds (over-the-counter and prescription)
Despite sharing my concerns, this is what I often heard from doctors:
- “You’re in the Normal Health category, so you’re good to go.”
- “Sometimes our bodies just do weird, unexplainable things.”
Time to Act Healthy
My body wasn’t just doing “weird” things. They were debilitating things. My pants would be comfortable one minute and too tight the next because of my ballooning abdomen. I would wake up each morning to burning or cramping sensations. And the always phlegmy throat made it difficult to sleep and sing.
Many friends and family couldn’t understand the sickness I could barely understand myself, and some focused primarily on how I “look healthy and thin,” as if appearance canceled out the rest.
Some focused primarily on how I “look healthy and thin,” as if appearance canceled out the rest.Lauren Smith
I tried to act healthy. (I still had my limbs, after all.) Tried to show up for every commitment no matter how I was feeling. Tried not to wonder what I should or shouldn’t eat, whether I’d be impolite to decline what someone cooked for me, whether I was actually hungry, and if I could easily use the bathroom the next day.
For fear of sounding like a hypochondriac, I tried not to complain too much, but I also needed to talk about things sometimes and be taken seriously. I wanted to trust doctors and respect their medical authority, but I also wanted to trust my intuition and listen to my body. I didn’t want to fixate anxiously on not knowing what I didn’t, but I also needed answers.
Trying to strike this balance was paralyzing and often felt lonely.
One year later, I had become disenchanted with conventional medicine, so my dad referred me to a long-distance homeopath who administered treatment through Asyra testing. I mailed her cotton swabs of my spit for each monthly test, and she emailed me results revealing other chronic things I dealt with (by now, I suspected everything was connected): brain fog, fatigue, dizziness, headaches, and more.
I was thankful for the results’ confirmation, but after several rounds of remedies, there were no signs of improvement. Plus, she didn’t offer health advice, and I wanted someone I could lean into for guidance. Our relationship was merely transactional.
In 2016, after repeatedly hearing how common it is to get misdiagnosed with IBS (or IBS only), I begrudgingly sought out a new GI doc for a third opinion. I didn’t know what else to do.
She scheduled a colonoscopy. Results were negative, which was good in retrospect. No colitis or Crohn’s. But at the time, it just felt like more, empty static on the other end of the line.
Once the Doc hurriedly shared the results, she turned to leave without offering a next step. My brain was steeped in a post-sedation fog, and I hadn’t eaten in over 24 hours, so through slow, slurred words, I desperately offered the only idea I could muster:
“W-w-w-what do you want me to do next? Try the Low FODMAP diet or s-sssomething?”
It was the same advice other docs had fallen back on. And it was my last-ditch effort.
“Oh, sure,” she said more casually than confidently. “Try that and let me know how it goes.” Then she left me unconvinced.
I further researched the Low FODMAP diet to see how to follow it correctly until eternity, but my head spun with various food lists, unclear instructions, and what-ifs.
Will I really be stuck on this diet for the rest of my life? Will it solve anything? Do I even have IBS?
I needed something to anchor me down so I could stop spinning. I needed to reach and tug at the roots of my health problems.
That summer, I stumbled upon Gut Thrive in 5, an online, 5-phase program with a holistic approach to healing leaky gut—the root cause of various disorders and symptoms. I hesitated to join because of its high cost, and I knew it would engulf my life for at least 2.5 months. I would have to be incredibly disciplined and devoted. I would have to cook every meal in thick Baltimore heat. Plus, what if this program wasn’t legit?
My desperate hope outweighed my fears and catapulted me into an unfamiliar world where I diligently followed all the steps for my group-based plan. Undergoing an intense diet adjustment and detox regimen and then trying to build healthy gut flora was demanding. But I learned a ton about our microbiome, food as medicine, what lies beneath digestive dysfunction, the impact of stress and emotional trauma, the gut-brain/brain-gut connection, an 80/20 lifestyle, etc.
By the end, I was able to use the bathroom more consistently. But bloating and other stubborn issues persisted. This program nudged me forward, but there was more to be done.
And I was determined to figure out what that was.
Jack: My Digestive Health Hope
Thankfully, the Gut Thrive team consults with Jack—a brilliant clinical nutritionist and certified homeopath. I’ve been seeking his help since January (2017), and he eventually deduced that I needed to test for small intestinal bacterial overgrowth (SIBO).
. . . *drum roll* . . . It came back positive!
A clear-cut diagnosis backed by data, after 11 friggin’ years! I was — am — beyond relieved.
Since being diagnosed with this digestive disorder in July, I’ve been on natural prokinetics and other herbal treatments under Jack’s guidance. Because of my Gut Thrive work and the diet I’ve maintained, meals haven’t changed much. (Avoiding all sugars, except for some fruit, is the biggie, as sugar feeds the bad bacteria.)
I’ve seen slight improvements so far, and I’m trying to receive these small victories with patience and hope. And what’s more, I’m beyond grateful to proceed with sharpened clarity and an expert in my corner!
I’ve seen slight improvements so far, and I’m trying to receive these small victories with patience and hope. Lauren Smith
I don’t share my story with you to incite sympathy. I share it because: If you’re walking around with an invisible illness, you need to understand that you’re not alone. If you’re exhausted from not knowing what to eat, explaining to others what it’s all like, and hearing heaps of confusing advice without getting anywhere, you are not alone.
We’re on this journey together, searching for answers and hoping to feel a heck of a lot better!
In light of this, I’d like to leave you with five suggestions:
Talk about What Ails You: Talk to people who are genuinely open to hearing you, not talking at you. Don’t keep talking about it to people who approach your sickness with apathy or disbelief.
Listen to Your Gut: Listen to your digestive gut and gut instincts. If medical advice seems lacking, speak up and ask more questions (something I’m still growing in), and if you’re smacking walls, seek out another professional opinion. If you have IBS, ask your doctor for a SIBO test. (To treat IBS, you have to treat SIBO first.) Western Medicine doesn’t always recognize SIBO, so if your doctor brushes it off, find a naturopath or homeopath, who will likely know how to move forward with testing and treatment.
Branch Out: Insurance and finances can be limiting, but when it comes to gut health, so can conventional medicine. If you can swing it, I encourage you to find an integrative medicine doctor or someone certified in homeopathy and nutrition.
Find a Healthy Balance: Research and try new treatments, but know when to take a breather. Recognize when anxiety over an uncertain outcome overshadows your desire to find a solution. Give your new treatment path a fair shot. Do what you can with what you know, and wait patiently. (It’s hard, I know!)
Manage Anxiety: Anxiety has physical consequences. It can worsen SIBO, while SIBO can, in turn, feed it. If your anxiety is pervasive, consider seeing a counselor (I see one). Do more of what you enjoy, don’t overcommit, and take time to rest. Exercise also helps us feel better and get grounded (literally and emotionally). For my constipated peeps out there, it can get “things” moving!