Protein losing enteropathy is a serious condition usually caused by an underlying gastrointestinal problem or previous heart surgery. Medical treatments and dietary changes can help manage symptoms and improve your life expectancy.
Protein losing enteropathy (PLE) occurs when too much protein leaks into your bowels. PLE makes your body lose crucial proteins, which can be fatal.
PLE isn’t a disease. Rather, it’s a syndrome — a group of symptoms. This means it results from a separate long-term condition, such as Crohn’s disease. Because of that, PLE can be hard to treat.
In this article, we’ll take a closer look at PLE, including its causes, symptoms, diagnosis, treatment, and outlook for people with this condition.
There are a couple of known reasons why PLE can occur.
First, many gastrointestinal (GI) conditions trigger inflammation inside your bowels. Usually, peoples’ bodies digest and absorb most of the proteins in their gut. But bowel inflammation can interfere with this process, causing PLE.
Other conditions can cause your body to make too much lymph, which is very rich in protein. The excess lymph drains into your bowels, resulting in PLE.
PLE can affect people of any age, race, or gender with certain long-term conditions. Doctors usually separate diseases that can trigger excessive protein loss into three groups:
Erosive and ulcerative GI disorders
These conditions cause sores and ulcers in the lining of your GI tract:
- Crohn’s disease
- ulcerative colitis
- cancers of your stomach or colon
- stomach ulcers
- C. diff infection
- graft-versus-host disease, which may occur after a stem cell transplant
Non-erosive and non-ulcerative GI disorders
These GI conditions don’t cause bowel sores. This group includes:
- celiac disease
- certain bacterial and parasitic infections
- amyloidosis, or an unhealthy buildup of protein in your body
- AIDS
- lupus
- rheumatoid arthritis
Disorders that affect your lymphatic system
The lymphatic system drains fluid from your tissues. Conditions that can interfere with it include:
- different types of heart disease
- cancers of the lymphatic system
- certain types of liver cirrhosis
One of the most common reasons for PLE is a type of open-heart surgery called the Fontan procedure. Doctors perform it on people (primarily children) with congenital heart disease.
Peripheral edema, or swelling in your hands or lower legs, is the most common symptom of PLE. Other symptoms depend on the underlying condition.
People who have PLE due to GI inflammation may experience:
- diarrhea
- bloating
- stomach pain
- frequent bacterial, viral, and fungal infections
People who have PLE as a result of a heart condition can have the following:
- shortness of breath
- pitting edema, or a type of swelling under your skin
- other symptoms of heart failure
To diagnose PLE, a doctor will first confirm that you have an underlying condition. If they can’t confirm you have an underlying reason for PLE, they’ll look for another condition with similar symptoms to PLE, such as:
- liver disease
- kidney conditions, including nephrotic syndrome
- protein malnutrition
- malabsorption
- hypoalbuminemia
- salmonella infection
To identify the underlying disease, the doctor will perform a physical exam and run a few tests. These include:
- imaging tests (MRI, CT scan, or X-ray)
- endoscopy, enteroscopy, or colonoscopy
They’ll also run blood, urine, and stool tests to measure your protein levels. This will confirm the PLE diagnosis. One of the most common tests is called the alpha-1 antitrypsin (A1AT) clearance test. It measures protein levels in your stool.
The most effective way to help with PLE is to treat the underlying condition. Certain medications, for example, diuretics and steroids, can help reduce inflammation that causes PLE.
But treating the underlying disease isn’t always possible or may not be enough. If this is the case, your doctor will look for ways to get the protein back into your body. They may, for example:
- switch your diet to increase the amount of protein and decrease the amount of fat
- infuse protein into your blood through an IV
- perform lymphatic embolization to seal off leaky lymphatic vessels
Diet is one of the most effective ways to prevent damage caused by PLE. Your doctor will likely recommend you eat a high protein diet. Lowering the amount of fat you eat can also have a positive effect as it can limit protein leakage through the lymphatic system.
But diet doesn’t treat PLE itself. Your doctor will likely use other treatments together with dietary changes to help control this condition.
PLE is a very serious condition. If left untreated, it depletes your body of vitally important proteins. This can be fatal.
Newer, specialized treatments can increase your rates of survival. Be sure to speak with your doctor about your specific outlook.
PLE is a very serious condition that causes your body to lose large amounts of protein. It occurs as a result of other long-term conditions.
These conditions usually affect your GI tract, heart, or lymphatic system. The main symptom of PLE is peripheral edema, but you’ll likely have other symptoms specific to your underlying condition.
The best way to treat PLE is to treat the underlying disease. But PLE-specific treatments can also help manage this condition.
PLE can be fatal, but newer treatments may improve your outlook.