Protein-Losing Enteropathy

What Is Protein-Losing Enteropathy?

Protein-losing enteropathy is when too much protein leaks into the intestines (bowels). Often, this happens because of a chronic (long-lasting) health condition.

Depending on its cause, doctors usually can treat protein-losing enteropathy.

What Happens in Protein-Losing Enteropathy?

Protein-losing enteropathy (en-teh-ROP-uh-thee) happens when there’s a problem with the flow of lymph. Lymph is a clear fluid that carries proteins and fats, fights germs, and keeps the body’s fluid levels normal. In protein-losing enteropathy, too much lymph (and the protein in it) leaks into the intestines.

What Are the Signs & Symptoms of Protein-Losing Enteropathy?

Symptoms of protein-losing enteropathy can be mild or severe, depending on what’s causing it. A child may have:

• swollen legs and arms (edema)
• fluid buildup in the belly, around the heart, or around the lungs
• diarrhea
• trouble digesting food and gaining weight
• trouble fighting infections

What Causes Protein-Losing Enteropathy?

Children with protein-losing enteropathy usually have it because of a health problem. These include:

• problems with lymph vessels in the intestines
• congenital heart disease or the surgery to treat it
• gastrointestinal problems, such as Crohn’s disease, ulcerative colitis, or celiac disease
• cancerous and non-cancerous tumors
• infections

How Is Protein-Losing Enteropathy Diagnosed?

If a child has signs of the condition, doctors ask about symptoms, do an exam, and order blood tests, urine (pee) tests, and stool (poop) tests.

Other tests to find the cause of protein-losing enteropathy may include:

• imaging studies such as X-rays, a CT scan, ultrasound, or an MRI
• studies that use a tiny camera on a tube to look inside the digestive tract (endoscopy, enteroscopy, colonoscopy)
• studies that can look at video from a capsule that is swallowed (wireless capsule endoscopy)

How Is Protein-Losing Enteropathy Treated?

Treating protein-losing enteropathy usually involves a low-fat, high-protein diet; dietary supplements to boost nutrition; and intravenous (IV) protein infusions. Compression stockings, which gently squeeze the legs, can help with edema (ih-DEE-muh), as can raising the arms and legs.

Depending on what’s causing the condition, other treatments may include: 

• surgery to remove a growth or part of the intestines
• a procedure by an interventional radiologist to fix an abnormal lymph vessel
• medicines for an infection
• diet changes for celiac disease

How Can Parents Help?

If your child has protein-losing enteropathy, be sure to:

• Take your child to all doctor’s visits.
• Help your child with any prescribed diet changes. 
• Give your child any medicines as prescribed.
• If a chronic health condition caused the problem, learn all you can about it. Ask your doctor for more information and to recommend websites and support groups (either local or online). Talking with other families going through the same thing can help.