Trichophagia (Rapunzel Syndrome): Symptoms, Health Risks, & Treatments

What Is Trichophagia?

Trichophagia involves the act of eating hair. It is a psychiatric somatic symptom disorder that is mostly, though not exclusively, seen in females. Nicknamed Rapunzel syndrome, trichophagia can lead to serious, sometimes life-threatening medical problems that may require gastrointestinal surgery. This is likely due to the growth of a hairball that accumulates in the small intestine.

When the small intestine runs out of space, hair infiltrates surrounding areas. Symptoms do not occur until the GI tract (esophagus to rectum) becomes clogged with hair. The syndrome often goes undiagnosed or undertreated and is often misdiagnosed as a gastrointestinal problem.¹

Who Gets Trichophagia?

Trichophagia is found mostly in females who started eating and pulling their hair during middle childhood or adolescence. In males, this disorder often begins at a younger age, during early to middle childhood.¹ Children may eat their own hair, their dolls’ hairs, found hairs, or paint brush bristles.

Trichophagia & Trichotillomania

Trichotillomania is a somatic symptom disorder that is characterized by hair pulling. Hair can be pulled from anywhere it grows (e.g., eyebrows, eyelashes, pubic hair, etc.). Pulling hair from the head often creates noticeable patches, often resulting in the person wearing hats or wigs in an effort to try and hide or camouflage the bald spots. People may start avoiding going to work or socializing.

Approximately 20% of people with trichotillomania end up eating their hair after pulling it out.² Eating the hair could be the last step in a series of ritualized hair pulling behaviors. Some people wind the pulled hair into a ball and swallow it whole, which is especially risky if they have long hair. However, not all hair pullers eat their hair, and not all people who eat hair pull their hair out.

By association with trichotillomania, trichophagia is considered a body-focused repetitive behavior. Other repetitive behaviors serve the same soothing purpose as hair pulling and eating.

Other Disorders Related to Rapunzel Syndrome

Other behaviors that often co-occur with trichotillomania, and their associated frequencies include:³

• Skin picking (51%)
• Nail biting (30%)
• Lip/cheek biting (26%)
• Nose picking (12%)

Signs & Symptoms of Rapunzel Syndrome

Unfortunately, signs and symptoms of Rapunzel syndrome don’t typically manifest until there are physical symptoms of a hairball that has accumulated over years—if not decades. People with trichophagia may seek medical help due to symptoms like abdominal pain or swelling, nausea, and vomiting. Many patients deny any history of trichotillomania or trichophagia, even when they are specifically asked.⁴

Signs of trichophagia include:

• Abdominal pain or swelling
• A mass developed in the upper abdomen
• Halitosis (bad breath)
• Peritonitis (inflammation of the abdominal wall lining)
• Nausea
• Vomiting
• Feeling full from eating small portions
• Weight loss

What Causes Rapunzel Syndrome?

There is no definitive cause of Rapunzel syndrome, but there appears to be a neurobiological predisposition in those who perform these behaviors. Conditions such as intellectual disabilities, anemia, and iron deficiency have been found in people with trichophagia, but it’s unclear what role they play in its development.^8,9

Nervous Emotions & Anxiety

Trichotillomania and trichophagia behaviors appear to have a calming effect for those who perform them. The behaviors are used as a way to regulate someone’s emotions and cope with stress, boredom, negative feelings, anxiety, tension, loneliness, fatigue, or frustration. Other emotional factors identified as contributing to the behaviors are parental discord, grief, or other family problems.

Depression & Social Isolation

People often experience feelings of  guilt, shame, and embarrassment from pulling or eating their hair. This can lead to social isolation in fear of being negatively judged by others. Social isolation often leads to symptoms of depression and erodes self-confidence, resulting in increased urges to self-soothe by pulling or eating hair.

Depersonalization

There is often a buildup of tension that triggers the urge to eat hair that has been pulled from the body or other sources (i.e., others’ loose hairs). The urges can be consciously acted upon as part of a daily routine or without the person’s awareness, similar to a nervous habit. Longer episodes can lead to feelings of depersonalization, being in a trance-like state, and losing track of time.

Health Risks & Complications of Rapunzel Syndrome

There are several health consequences from eating hair. Due to its enzyme-resistant properties and smooth, slippery surface, human hair cannot be digested, which means that it stays stagnant in the gastrointestinal system. Consequently, hair accumulates between the gastric mucosal folds that lead to the formation of a hairball.⁵ Trichobezoars were found to occur in 24% of females with trichotillomania and may be more complicated in people who have long hair.²

Potential health consequences from hairballs include:

• Ulcers that perforate the stomach and spread bacteria
• Infected or inflamed abdominal cavity (peritonitis)
• Gastrointestinal bleeding due to mucosal erosion
• Bowel obstruction

Can You Die From Rapunzel Syndrome?

Rapunzel syndrome can be fatal. While the prevalence of hairballs in humans is low, mortality rates may be as high as 30% if they remain untreated.⁷ It is unclear if this is an underrepresentation of how many deaths have actually been caused by trichophagia.

Diagnosis & Treatment for Trichophagia

The diagnosis of trichophagia often only occurs after seeking medical attention for gastrointestinal pain or the presence of other related symptoms likely due to a hairball. Tests are performed by a gastrointestinal endoscopy, ultrasound, CT scan, or x-ray of the abdomen. Treatments could include surgery, medication, and therapy, namely habit reversal training.

Surgery

Emergency surgery may be performed depending on the severity of the case.¹⁰ Surgical options include:

• Laparotomy (open surgery)
• Laparoscopy (localized abdominal surgery that breaks down and removes the hairball)
• Endoscopy (nonsurgical procedure that inserts a tube down the throat to the esophagus)

Medication

Psychiatric medications have also been prescribed to treat the disorder, including selective serotonin-reuptake inhibitors, N-acetylcysteine, naltrexone, topiramate, and atypical neuroleptics.

Therapy for Rapunzel Syndrome

Psychological treatment is also recommended for trichophagia. In habit-reversal therapy, patients learn to be aware of the internal and external cues as well as predictable and unpredictable situations that lead to hair pulling. They practice competing behaviors and movements such as keeping hands clasped, sitting on hands, or keeping hands busy by engaging in activities like knitting, crocheting, doing needlepoint, coloring, or other tasks that involve the hands.

Autogenic training is another behavioral treatment option geared toward stress reduction and improved body relaxation. It teaches relaxation techniques designed to reduce blood pressure, heartbeat, and body temperature.

Other cognitive behavioral therapy (CBT) strategies may be employed as well, including journaling, contingency planning for acting on urges, self-monitoring of symptomatic behaviors, thought-monitoring that precedes and follows episodes, and restructuring cognitive distortions and automatic negative thoughts.

How to Get Help for Rapunzel Syndrome

When looking for a therapist, it is recommended that the person be licensed, such as a psychologist, social worker, or counselor. Professionals who provide exposure and response prevention often have the skills mentioned in the above section. Good therapists welcome and will provide answers about their background and training. You can find a therapist by asking for a referral from your primary care provider, or by using an online therapist directory, where you can sort by specialty and insurance coverage.

Here are some more specific resources for getting help for trichophagia:

• Trichstop
• The TLC Foundation for Body-Focused Repetitive Behavior
• NOCD