Why Is It So Hard to Diagnose Crohn’s Disease?

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At 9, Natalie Rosenthal started having terrible stomach pains, fatigue, and diarrhea. She had dark circles under her eyes. She stopped growing taller or gaining weight.

“I had spasms whenever I ate anything,” says Rosenthal, now 40. “The pediatrician at first told my mom that I had a nervous stomach.” Meds to calm muscle spasms didn’t help, so her mother pressed for another diagnosis.

“She was a real tiger mom,” says Rosenthal, who lives in Atlanta. “She kept taking me back to the doctor. She said that I wasn’t a nervous child, and had no fear or anxiety about school or socializing. She said, ‘This is not psychological.’”

After a year, a gastroenterologist gave Rosenthal a colonoscopy that showed she had Crohn’s disease, not nerves. Symptoms of Crohn’s include stomach pain, fatigue, diarrhea, nausea, or vomiting, so doctors may mistake it for other conditions. Tests that show inflammation or its damage, like lesions, can reveal the right diagnosis.

Different People, Different Symptoms

Crohn’s is caused by an out-of-whack immune system that causes inflammation in your gastrointestinal (GI) tract.

The disease is hard for doctors to pin down, because it can affect different parts of the tract. That means not everyone has the same symptoms, says Edward V. Loftus, Jr., MD, a gastroenterologist at the Mayo Clinic in Rochester, MN.

“It’s important to rule out other conditions, because the symptoms are not specific,” he says.

Stomach pain, diarrhea, and fatigue could also mean you have irritable bowel syndrome (IBS) or celiac disease, Loftus says.

Mild inflammation may not show up on blood tests. Your doctor might mistakenly think you have anemia from low iron, not from low iron and the bleeding that can come with Crohn’s. Infections like salmonella, E. coli, and tuberculosis could also have Crohn’s-like symptoms.

Treatments for these conditions are quite different, Loftus says, so it’s important to do definitive testing before you start, Loftus says.

You Can Help the Process

Speak up about all of your current or past symptoms so your doctor can pinpoint Crohn’s clues, says Shamita Shah, MD, medical director of the inflammatory bowel disease program at Ochsner Health System in New Orleans.

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She says some people have "a symptom, like blood in the stool, and they think, ‘Oh, that’s just hemorrhoids.' It goes away, and then it comes back months or even years later.”

Don’t keep any symptoms from your doctor because you’re embarrassed or you think they’re no big deal. And don’t wait until it gets unbearable either, Shah says. You’ll risk damage to your intestines or need a stronger treatment.

“I have seen patients come into the hospital to get surgery for appendicitis, and then it turned out be Crohn’s,” she says.

Get the Right Tests

Blood tests may show signs of inflammation, but your doctor will probably need to see the inside of your digestive tract to diagnose you, Shah says.

“Crohn’s can affect you anywhere from your mouth to your anus, so we need to look for inflammatory signs,” she says. These include skip lesions, or areas of inflamed tissue next to areas that look normal.

These are the most common tests:

  • Colonoscopy uses a tiny camera inserted into your anus via a long tube while you’re sedated or asleep.
  • Enterography is a type of scan that shows a cross-section of your digestive system.
  • Endoscopy can show lesions in your upper digestive tract.

If these tests still don’t confirm Crohn’s, your doctor may want to do a wireless capsule endoscopy, Loftus says. You’ll swallow a pill with a tiny camera in it that lets your doctor see your whole digestive tract.

Don’t Ignore Symptoms

Crohn’s can strike kids, teens, or young adults, Shah says. You may be tempted to try to treat your symptoms on your own, or even downplay them, but those aren't good ideas.

Some young people are embarrassed to tell anyone about it, or they think nothing's wrong, she says. “They don’t know what these symptoms mean, or feel that it’s not really a big deal.”

About 17 years ago, Dana Hartline was diagnosed with ulcerative colitis, a disease that also causes pain and diarrhea. About a year later, she found out that she really had Crohn’s.

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Everyone’s body and disease is different, says Hartline, who lives in Marietta, GA. Her doctor at the time wasn’t open to listening to her concerns or questions. “I wasn’t experienced enough to know what to ask and was in so much pain at the time,” she says.

If you feel your diagnosis is wrong because you aren’t getting any relief from your treatments, speak up.

Or, find a doctor who’s the right fit for you, Hartline says. “The diagnosis and treatment came easily when I had someone who was willing to spend time with me, and who actively gave me the background and education on the disease, what to expect, what is normal, and what might raise a red flag.”

WebMD Feature Reviewed by William Blahd, MD on March 18, 2016

Sources

SOURCES:

Edward V. Loftus, Jr., MD, gastroenterologist, Mayo Clinic, Rochester, MN.

Shamita Shah, MD, medical director of inflammatory bowel disease, Ochsner Health System, New Orleans, LA.

Dana Hartline, patient, Marietta, GA.

Natalie B. Rosenthal, patient, Atlanta, GA.

Crohn’s and Colitis Foundation of America: “Crohn’s Diagnosis & Testing.”

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