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Why is it difficult to diagnose?

At age 9, Natalie Rosenthal began to have terrible stomach pains, fatigue and diarrhea. She had dark circles under her eyes. She stopped growing or gaining weight.

“I had spasms every time I ate something,” says Rosenthal, now an adult. “The pediatrician first told my mother that I had a nervous stomach.” Medication to calm the muscle spasms didn’t help, so her mother asked 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 I was not a nervous kid 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 which showed she had Crohn’s disease, not nerves. Symptoms of Crohn’s disease include stomach pain, fatigue, diarrhea, nausea, or vomiting, so doctors may mistake it for other conditions. Tests that show inflammation or its damage, such as lesions, can reveal the correct diagnosis.

Different people, different symptoms

Crohn’s disease is caused by a failing immune system that causes inflammation of the gastrointestinal (GI) tract.

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

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

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

Mild inflammation may not show on blood tests. Your doctor may mistakenly think that you have anemia due to low iron content, and not from low iron and the bleeding that can accompany Crohn’s disease. Infections like salmonella, E. coli, and tuberculosis could also present with symptoms similar to those of Crohn’s disease.

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

You can help the process

Talk about any current or past symptoms so your doctor can identify Crohn’s clues, says Shamita Shah, MD, medical director of the Inflammatory Bowel Disease Control Program at Ochsner Health System in New Orleans.

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

Do not hide any symptoms from your doctor because you are embarrassed or think it is okay. And don’t wait for it to get unbearable either, Shah says. You may damage your intestines or need more powerful treatment.

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

Get the right tests

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

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

Here are the most common tests:

  • Colonoscopy uses a tiny camera inserted into your anus through a long tube while you are 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 disease, your doctor may want to do a wireless capsule endoscopy, Loftus says. You will swallow a pill containing a tiny camera that will allow your doctor to see your entire digestive tract.

Don’t ignore the symptoms

Crohn’s disease can strike children, teens, or young adults, Shah says. You might be tempted to try and treat your symptoms on your own, or even minimize them, but these are not good ideas.

Some young people are embarrassed to tell anyone about it, or they think everything is fine, she says. “They don’t know what these symptoms mean, or think it’s not really serious.”

Years ago, Dana Hartline was diagnosed with ulcerative colitis, a condition that also causes pain and diarrhea. About a year later, she found out that she did have Crohn’s disease.

Everyone’s body and illness are different, says Hartline, who lives in Marietta, Georgia. Her doctor at the time was unwilling to listen to her concerns or questions. “I didn’t have enough experience to know what to ask and I was in so much pain at the time,” she says.

If you think your diagnosis is wrong because your treatments are not helping you, speak up.

Or, find a doctor that’s right for you, says Hartline. “Diagnosis and treatment came easily when I had someone who was willing to spend time with me, and actively gave me the history and education about the disease, what to expect, what is normal and what could trigger a red flag. “