While medicine has come incredibly far, misdiagnoses still happen. In some cases, this isn’t life-threatening. But if you have gastrointestinal (GI) symptoms that are getting worse or have never gotten better, it might be.

Read on to learn how some symptoms might be misdiagnosed, what follow-up questions you should ask, and when it might be time for a second (or third) opinion.

What are some common GI diagnoses?

When a person sees their doctor about abdominal symptoms that have lasted for some time, such as diarrhea, stomach cramping, or pain, the doctor may immediately consider several medical conditions. These include a longer-lasting stomach infection, irritable bowel syndrome (IBS), Crohn’s disease, or celiac disease. Such conditions are some of the more common associated with abdominal complaints and bowel problems. So when most people go to see a doctor about GI symptoms, those symptoms will likely be due to one of these conditions.

However, there is always a chance that a person could be experiencing the symptoms of something rarer, such as a metastatic carcinoid tumor (MCT). This condition can cause stomach upset symptoms, including chronic diarrhea, malnutrition, and weight loss. According to the Carcinoid Cancer Foundation, doctors often misdiagnose MCT symptoms as IBS or Crohn’s disease. A person may even receive treatments for these other conditions for many years with mild improvements before their condition advances.

What follow-up questions should I ask?

If you’ve visited a doctor for a workup regarding your abdominal symptoms and received a diagnosis, you’ll want to ask some follow-up questions.

To start, you may consider asking your doctor if they made a diagnosis of exclusion. This means that your doctor ordered testing for a number of similar conditions, and when those results weren’t positive for the condition, your doctor diagnosed the most likely condition.

For example, a diagnosis of IBS can sometimes be one of exclusion because there aren’t definitive tests that can prove without question a person’s symptoms are IBS.

Here are a few other follow-up questions you might ask:

  • What results of my testing led you to make this diagnosis?
  • How certain is the diagnosis based on the results so far?
  • When can I expect to feel better if I follow the treatment plan you’ve recommended?
  • When should we re-evaluate my symptoms and treatment plan, if the recommend treatment isn’t helping?
  • What symptoms should I call you about that could indicate my condition may not be what we think it is?

In addition to these considerations, you may also have to do some research. Review information on the condition you’ve been diagnosed with on trusted medical websites. Read the information pamphlets provided with the medications your doctor prescribed. Ask further questions of your doctor or pharmacist to help you understand what your condition is as well as what it isn’t.

When should I seek a second (or third) opinion?

If you’re concerned your symptoms could be due to an MCT, the decision to seek a second or even third opinion can be a difficult one. However, you must put your health above hurt feelings or strained relationships with a doctor. Remember, a doctor is supposed to have your best medical interests at heart. Most aren’t offended if they hear that you’re seeking a second opinion.

You should almost always seek a second opinion if you receive a diagnosis that is either life-changing or potentially life-threatening. Reasons for seeking a second opinion include:

  • To confirm the diagnosis is accurate and appropriate and that further medical testing isn’t needed to rule out another medical condition.
  • To confirm the treatment recommendations from your doctor are appropriate. Whether they involve surgery or medication management, a second opinion can help you determine if the treatment will truly address your condition.
  • To provide you with peace of mind. While there is almost no 100 percent certainty in medical diagnosing, having another medical specialist confirm a diagnosis can help reassure you when it’s time to make important decisions about your health.

You can seek a second medical opinion in several ways.

Ask your doctor for a referral

One approach is to contact your doctor directly. You can let them know that because the diagnosis is life-changing, you’d appreciate the opportunity to confirm it with another doctor.

Then ask your current doctor for a referral or recommendation to another doctor either in their group or in another practice. The benefits of this are that you’re up-front with your doctor and can also get previous diagnostic test results to show another doctor.

Look for another doctor on your own

Sometimes you may not feel comfortable asking your doctor for referrals for a second opinion. That’s fine too. You can search online for doctors in your area, call your local healthcare system for recommendations, ask friends for doctor referrals, or contact your insurance company for a list of in-network providers.

Some healthcare systems also offer second opinion services. For example, the Cleveland Clinic offers MyConsult, an online medical second opinion program, and UCSF has a second opinion program. These services can make getting a second opinion easier.

If you think you may have an MCT, when considering a doctor for a second opinion, it’s important to ask if they have experience in diagnosing or treating MCTs. Because the condition often goes underdiagnosed due to its rare nature, you should seek an MCT specialist.

The takeaway

The average time it takes for someone to start experiencing symptoms of and be diagnosed for an MCT is roughly 9.2 years. By this time, the tumor has likely spread to other areas of the body, which can make it more difficult to treat.

For this reason, it’s important to seek a second opinion on a GI medical diagnosis and to closely monitor your symptoms. Noting changes as early as possible can increase the likelihood for a better outcome.