When Toby Gilbert was 6 years old, he started complaining of abdominal pain. The pain became so unbearable that he would cry out that he didn’t want to live anymore. “He would just be in the bathroom saying, ‘Something ripped. Something tore. I think this is the end,’” Toby’s father remembers.
Heartbroken and desperate for answers, his parents, Tedd and Lorraine Gilbert, took him to the ER and consulted multiple doctors. Despite undergoing a battery of scans and receiving a range of diagnoses—including irritable bowel syndrome (IBS), abdominal migraines, and anxiety—none of the treatments offered any relief.
After exhausting their options, they finally found a doctor who truly listened and refused to dismiss Toby’s symptoms. That surgeon, Dr. Richard Hsu, uncovered the answer to his medical mystery: a vascular compression condition known as median arcuate ligament syndrome (MALS).
MALS is a rare vascular condition that happens when the median arcuate ligament, a band of tissue in the upper belly area, compresses the celiac artery, a major blood vessel that supplies blood to the stomach. This compression can restrict blood flow to the stomach and other abdominal organs, leading to debilitating pain, nausea, and difficulty eating.
“When someone has MALS, the pain they feel increases when their stomach is full. It doesn’t matter what it is full of—air, food, or liquid,” Toby’s mother, Lorraine Gilbert, a registered nurse, told The Epoch Times. “Any time the stomach is full, it puts more pressure on the celiac ganglion and the nerves. Likewise, if the intestines are full, it can increase pressure as well.”
Some specialists like Hsu believe that MALS pain comes from inflammation of the celiac ganglion, a bundle of nerves near the celiac artery. He explains in a video that the diaphragm sits too low in the body and pushes on these nerves.
In 2017, Hsu performed his first pediatric MALS surgery—with Toby as the patient.
emphasized the immediate effects of surgery. “You can see the blood vessels inflate as soon as we surgically release the compression,” he told The Epoch Times.
Challenges in Diagnosis
Toby’s experience illustrates the challenges in diagnosing MALS. Initially, he suffered from severe post-meal pain that escalated into unbearable episodes that left him unable to function normally. Some doctors told his parents it was constipation, prescribing Miralax, but the relief was brief, and symptoms would quickly return, his mother said.
Although he tested negative for celiac disease, his parents also tried putting Toby on a gluten-free diet, which seemed to help temporarily. A FODMAP diet, low in certain sugars poorly absorbed in the small intestine, also decreased some inflammation, but symptoms persisted.
The problem with accurate diagnosis lies in MALS’ ability to mimic other conditions, such as IBS and Crohn’s disease. Standard gastrointestinal tests often fail to detect it, leading to a frustrating cycle of misdiagnosis.
Advances in diagnostic imaging, such as Doppler ultrasound, computed tomography angiography, and magnetic resonance angiography, all used to visualize blood flow and detect abnormalities in blood vessels, have improved the ability to identify MALS.
A 2023 peer-reviewed study highlighted that MALS is a rare condition affecting about two in 100,000 people. It significantly affects quality of life but often goes undiagnosed for years due to its rarity and similar symptoms to common digestive issues.