Common Symptoms and Difficulty of Diagnosis

“Leaky gut syndrome” is said to have symptoms such as bloating, gas, cramps, food sensitivities, and aches and pains. But it’s kind of a medical mystery.

“From an MD standpoint, it’s 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, our largest organ of the immune system.”

“Leaky gut syndrome” is not a diagnosis taught in medical school. Instead, “leaky gut really means you have a diagnosis yet to be made,” Kirby says. “You hope your doctor is a good Sherlock Holmes, but sometimes it’s really hard to diagnose.”

“We don’t know much, but we know it exists,” says Linda A. Lee, MD, a gastroenterologist and director of the Johns Hopkins Integrative Medicine and Digestive Center. “In the absence of evidence, we don’t know what it means or what therapies can address it directly.”

Intestinal Permeability

One possible cause of leaky gut is increased gut permeability or gut hyperpermeability.

This can happen when tight junctions in the gut, which control what passes through the lining of the small intestine, don’t work properly. This can cause substances to leak into the bloodstream.

People with celiac disease and Crohn’s disease experience this. “Molecules can cross over in some cases, such as Crohn’s disease, but we don’t know all the causes,” Lee says. Whether hyperpermeability is more of a contributing factor or a consequence is unclear.

But why or how this would happen to someone without those 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

Leaky gut symptoms are not unique. They are also shared by other problems. And tests often fail to reveal a clear cause of the problem. That can leave people without a diagnosis and therefore untreated.

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

“You may have leaky gut and we may be able to treat its cause,” Kirby says. “If something is going on, it’s the duty of the medical community to listen to you.”

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

“Often the reason they have resorted to alternative medicine is because of what they have been told and how they have been treated by other practitioners,” Lee says. “We have to listen.”

Treatment without examination

In her clinic, Lee combines conventional medicine with evidence-based complementary therapies. But with leaky gut, she says, the evidence — about the cause and how to treat it — has yet to fully gather. This is something that is essential for patients to understand.

“We’re still in the early stages of understanding what to do,” Lee says. “People who claim what to do do it without evidence.”

For example, many websites that provide information about leaky gut recommend taking L-glutamine supplements to strengthen the lining of the small intestine. Lee says that makes sense in theory, given glutamine’s role in gut function — but there’s no research to back up such claims.

“There’s no evidence that if I give you a stack of glutamine pills, you’ll improve,” Lee says.

Lifestyle can matter

Treating the underlying condition, such as Crohn’s disease or celiac disease, will often resolve the condition’s symptoms. But without a firm diagnosis, a doctor’s hands are often tied for lack of evidence.

Diet probably plays a big part in having a leaky gut, Lee and Kirby agree. So if you have symptoms of leaky gut, you would do well to see a gastroenterologist who is also trained in nutrition.

Chronic stress can also be a factor, Lee says. “You need to reduce your stress, whether it’s medication or meditation. That’s what you need to focus on.”

Lee says lifestyle changes, such as those that reduce stress and improve diet, can be one of the best ways to treat leaky gut, especially when no underlying condition has been identified. “Chronic health problems are so often due to lifestyle, and we don’t have pills for that,” she says. “We’re talking about the way we live and the way we eat.”

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