Common Symptoms and the Difficulty of Diagnosis

The leaky gut syndrome is said to have symptoms such as bloating, gas, cramps, food intolerances, and pain. But this is something like a medical secret.

“From an MD perspective, this is a very gray area,” says gastroenterologist Donald Kirby, MD, director of the Center for Human Nutrition at the Cleveland Clinic. “Doctors don’t know enough about the gut, which is our largest immune system organ.”

“Leaky Gut Syndrome” is not a diagnosis taught in medical school. Instead, “leaky gut actually means you have a diagnosis that still needs to be made,” says Kirby. “You hope your doctor is a good-enough Sherlock Holmes, but sometimes it’s very difficult to make a diagnosis.”

“There’s a lot we don’t know, but we know it exists,” says Linda A. Lee, MD, a gastroenterologist, and director of the Johns Hopkins Center for Integrative Medicine and Digestion. “In the absence of evidence, we don’t know what it means or what treatments could directly affect it.”

intestinal permeability

A possible cause of increased intestinal permeability is increased intestinal permeability or intestinal hyperpermeability.

This can happen when the tight junctions in the gut that control what passes through the lining of the small intestine don’t work properly. This can lead to substances entering the bloodstream.

This is experienced by people with celiac disease and Crohn’s disease. “Molecules can be transmitted in some cases, such as Crohn’s disease, but we don’t know all the causes,” Li says. It is unclear whether hyperpermeability is more of a contributing factor or a consequence. But why and how this could happen in someone without these conditions is not clear. Little is known about other causes of leaky gut that are not related to certain types of medications, radiation therapy, or food allergies.

Unsolved Mystery

Symptoms of increased intestinal permeability are not unique. They share other issues as well. And tests often fail to reveal the exact cause of the problem. This can leave people without a diagnosis and therefore without treatment.

It’s important to find a doctor who takes the time and takes your concerns seriously, Kirby says.

“You may have a leaky gut, and we can treat whatever is causing it,” Kirby says. “If you have something going on, the medical community has an obligation to listen to you.”

Unfortunately, Lee says, not all doctors make an effort to get to the root of the problem, and that is what often sends patients to alternative doctors.

“Often, the reason they turn to alternative medicine is because of what they were told and how they were treated by other medical practitioners,” Li says. “We need to listen.”

Treatment without research

At her clinic, Li combines conventional medicine with evidence-based complementary therapies. But with leaky gut, she says, the data on what causes it and how to treat it is not yet fully accumulated. This is important for patients to understand.

“We’re in the infancy, and we don’t know what to do,” Lee says. “People who say what to do it without evidence.”

For example, many websites offering information on leaky gut recommend taking L-glutamine supplements to strengthen the lining of the small intestine. Lee says this makes sense in theory, given the role of glutamine in the gut, but there are no studies to support such claims.

“There is no evidence that if I give you a bunch of glutamine pills, you will get better,” Li says.

Lifestyle can matter

Treating an underlying condition, such as Crohn’s disease or celiac disease, often resolves the symptoms associated with the condition. But without a firm diagnosis, the doctor’s hands are often tied due to lack of evidence.

Li and Kirby agree that diet probably plays a big role in a leaky gut. So if you have leaky gut symptoms, you should see a gastroenterologist who is also trained in nutrition.

Chronic stress can also be a factor, Li says. “You need to deal with stress, whether it be through medication or meditation. That’s what you need to focus on.”

Li says lifestyle changes, such as reducing stress and improving diet, may be some of the best ways to treat leaky gut, especially when no underlying condition is identified. “Chronic health problems are often lifestyle-related, and we don’t have pills for them,” she says. “We talk about how we live and how we eat.”