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Gut Disorders Can Be a Diagnostic Puzzle

Kelsey Tyler

As a trending topic, gut health is sticking around: Gluten-free selections are a mainstay at major supermarkets. Products touted for their probiotic benefits, like Greek yogurt and kombucha, have become refrigerator staples. Even fecal transplants are a mainstream, openly discussed treatment. Is gut health all the rage because the wellness industry wants it to be? Maybe, to some degree. But it’s also because our gut problems are growing.

In the U.S., Canada and much of Europe, chronic health conditions associated with intestinal inflammation are on the rise. These include inflammatory bowel disease, a category that encompasses both Crohn’s disease and ulcerative colitis. Between 1999 and 2015, the number of American adults diagnosed with either Crohn’s disease or UC increased by approximately 40 percent. In a 2017 survey of Americans with IBD, 62 percent said it took five or more doctors’ visits to receive the correct diagnosis.

There’s also celiac disease, an autoimmune condition triggered by eating gluten in wheat, rye and barley. The celiac data can be hard to parse. Confirmed diagnoses have more or less held steady over the past decade, although researchers estimate that 97 percent of Americans with celiac disease still don’t know they have it. And while the issue is often self-diagnosed, complaints of non-celiac gluten intolerance (or sensitivity) have surged, in step with myriad other autoimmune illnesses and allergies.

Despite increased awareness around gut health, getting to the bottom of intestinal inflammation can feel like a Choose Your Own Adventure book that’s full of red herrings. Crohn’s, UC and celiac share a laundry list of overlapping, painful symptoms, and all three diseases can have major health repercussions. The good news is that effective treatments do exist, and patients who’ve found relief say having persistence and a game plan pays off.

Misunderstood and misdiagnosed

Today, lifestyle influencers casually reference “gut bacteria” and gluten-free menu options are becoming common across the country. It can be easy to forget that widespread familiarity with gut health is a recent development. Chantal, a 24-year-old graduate student in Toronto, can attest to how poorly understood digestive and bowel disorders were just a dozen years ago.

“From ages zero to 12,” she says, “I had pretty consistent abdominal pain and diarrhea.” As a child, Chantal was shuffled from expert to expert, with various doctors telling her she was prone to stomach bugs or simply “an anxious child.” In retrospect, Chantal says that some of her symptoms were classic signs — chronic fatigue and a distended abdomen, for instance. Eventually, her symptoms became so severe that she couldn’t eat. Desperate for an answer, her mother and stepfather took to Google. Soon enough, a simple blood test confirmed she had celiac disease.

“I was only 12, but I remember the doctor being kind of sheepish, like, ‘Oh, okay, go on a gluten-free diet,’” she recalls. “Within three days, my symptoms were starting to improve. It was such a simple solution, but nobody took the time to really keep pushing in terms of investigation.”

On the surface, celiac and IBD can present similarly to the unspecialized eye, as is true of a host of other, less severe inflammatory bowel conditions. But inside the body, the two issues look different. Celiac is a disease of the small intestine, wherein gluten consumption triggers a localized immune response. Crohn’s can occur anywhere in the digestive tract between the mouth and the anus. UC is limited to the colon, or large intestine. In Crohn’s, there are healthy intestinal portions interspersed between inflamed areas, whereas in UC, the whole colon is inflamed. Courses of treatment are different for each issue.

Nevertheless, because the three diseases are similar in symptomatology, misdiagnosis and delayed diagnosis are rampant. Intestinal perforation is a potentially life-threatening complication of both celiac and IBD; a sizable proportion of Crohn’s and UC patients require one or more bowel surgeries in their lifetimes; IBD and celiac come with a significantly increased vulnerability to colorectal cancer. To further complicate matters, celiac patients are more likely than the general population to have IBD or microscopic colitis, a less severe, inflammatory cousin of UC.

Tina Aswani Omprakash, a New York City public health advocate who blogs at Own Your Crohn’s, understands firsthand how easily medical professionals can conflate one intestinal disorder with another. She was incorrectly diagnosed with mild ulcerative colitis in 2006. She readily admits that her symptoms and disease presentation, within the intestine, were consistent with her diagnosis.

It’s often so hard to tease out whether a patient has Crohn’s or UC,” Omprakash says. “[Getting it right] can make the biggest difference when it comes to surgical treatment options.”

It would take another five years, and multiple hospitalizations, before Omprakash got a revised (and correct) diagnosis of Crohn’s disease. But even then, successful disease management wasn’t immediate. It took more than 10 years and 20 surgeries before her Crohn’s flare-ups went into remission.

Getting the right care

While a blood test can confirm celiac, there’s no objective diagnostic test for UC or Crohn’s. Omprakash concedes that getting the right care for these conditions might require extra legwork. As a leading voice in the IBD community and a student in the certified public health program at Mount Sinai Icahn School of Medicine, she would know.

“I always tell patients to seek out a top doctor at a university hospital that has an IBD center,” she says. These centers are most likely to have access to and experience prescribing the latest FDA-approved medications, as well as connections to clinical trials. Many of these doctors are also researchers with intel on the latest treatments and diagnostic methods.  

But university medical centers aren’t necessarily accessible options for everyone. No matter who patients see, they should make sure their doctors are getting a picture of what’s going on inside the intestine. This process should involve one or more endoscopic procedures (that is, an inside peek via an intraintestinal camera), and might also include noninvasive imaging tests like CT scans and X-rays.  

Omprakash says that a colonoscopy with biopsies is “really the gold standard” for diagnosing IBD. A capsule endoscopy, a somewhat sci-fi procedure where the patient swallows a camera-containing capsule, is particularly useful for spotting Crohn’s. Another helpful tool is MR enterography: This technique uses an MRI scanner to detect intestinal abnormalities like ulcers and abscesses, which can also help point to a diagnosis.

Ultimately, for these complex, inflammatory conditions, the path to effective diagnosis and symptom management can involve a lot of trial and error. But patients have more power than they might think. What it all comes down to, as Chantal sees it, is determination. “Advocate for yourself,” she said. “And be firm.”

Chantal urges patients to be proactive about researching their symptoms and potential options for testing and treatment. While she cautions against placing too much stock in “Dr. Google,” her own breakthrough came from an online search. Patients, she says, are in the best position to identify what they themselves are feeling; they should feel empowered to seek the care that’s right for them. 

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