Treating Anorexia and MCAS

In the past, a number of posts in this blog focused on chronic anorexia, people trapped in years of restriction, relentless thoughts about body and weight and no path towards recovery. Some of these people found a middle ground where they ate enough to get by and live a life limited by the eating disorder but also somewhat stable. Others remained very sick; psychiatric care was primarily harm reduction and sometimes palliative care.

The sickest of that group often didn’t survive the illness.

Recent discoveries about medical conditions connected with anorexia uncovered the theory that the sickest cohort actually has an undiagnosed medical condition which left them so disabled, one I have mentioned here recently, mast cell activation syndrome (MCAS).

It’s almost shameful for me to think back to how I saw a variety of symptoms as a result of anorexia rather than signs of a separate but connected illness. These patients experience extreme pain and bloating from eating anything, intractable abdominal distention and constipation, chronic joint and body pain, regular dizziness with passing out, cognitive effects with brain fog and many other symptoms.

Clinicians who treat people with eating disorders still assume these symptoms are a result of chronic malnourishment and refuse to even consider that another medical diagnosis is present. Some people with chronic anorexia don’t have signs of MCAS and they aren’t as sick. For people with both illnesses, treatment providers tend to blame the sickest patients with chronic anorexia and often refuse to treat them because they “won’t comply with treatment.”

Patients with anorexia and MCAS need to be diagnosed and treated earlier so that the MCAS doesn’t become as severe. I have written about histamine blockers like allergy medications and Pepcid, low dose naltrexone and a variety of other mast cell stabilizers before. Treating patients earlier for MCAS can prevent the most severe cases.

I am also seeing a significant number of patients with more severe anorexia and MCAS do surprisingly well on very low dose GLP-1’s. They don’t experience appetite suppression, slowed digestion or weight loss like most people do. In fact, these patients tend to feel more clear hunger and fullness cues, improved digestion and a sharp decrease in discomfort and pain after eating.

It appears to me that GLP-1’s likely treat a gastrointestinal hormonal imbalance and decrease inflammation, very different results from how most people experience the drugs.

Anyone with chronic anorexia needs an evaluation for MCAS. Treating the inflammation symptoms can help make it easier to eat regularly and decrease eating disorder thoughts. Treating MCAS makes recovery from anorexia possible for some people even though the process of treatment remains extremely challenging. Addressing the medical and psychiatric causes gives people with chronic anorexia a fighting chance to get well.

The Isolation of Having an Eating Disorder

Having an eating disorder is a very lonely experience. The relentless thoughts about food or weight, about the right food choices or about how one is perceived overwhelm daily life. The demands, both emotionally and physically, of managing an eating disorder take over one’s life. The behaviors take priority over everything.

Due to all these pressures, there is very little room for other parts of life: family, personal and professional relationships, activities and even any sense of joy. The things well people take for granted are almost an afterthought to people with an eating disorder.

Eating disorders also hold most of their power through secrecy. Exposing the heart of the illness feels very shameful for people to even consider. The underlying feeling of shame is often cloaked in superiority or necessity or self-hatred. There is no consideration of understanding one’s experience at all but only that what they need to do each day must be done. The secrets of the eating disorder are typically what keeps people stuck for long periods of time.

The mundane interactions of daily life often trigger the most painful emotions for someone with an eating disorder and thereby reinforce the secrecy and shame. Saying “How are you?” can feel like a reproach since they feel so bad all the time. Mentioning food or weight at all becomes a devastating reminder of their suffering. A doctor’s appointment inevitably leads to a comment about health, weight and nutrition that cements how much they feel like a failure. The list goes on and on.

This experience of always being misunderstood, always being alone and always hiding behind secrets and shame is a symbol of the ultimate pain of suffering with an eating disorder.

With all the focus on GLP-1’s, inflammatory illnesses related to eating disorders and the onslaught of private equity financing of treatment centers, the true experience of someone with an eating disorder remains unchanged. These people feel very alone, deeply misunderstood and consumed by thoughts and behaviors which derail their lives.

Accordingly, treatment still must focus on understanding, empathy, kindness and care. It’s true now as much as ever that people get better when they receive these simple gestures in their lives day after day as they find their way through the complexities and frustrations of recovery.

The loneliness of an eating disorder is a painful experience. A provider who can be human and genuine, while also being knowledgeable and extremely caring, will give enough to foster the growth and joy recovery can bring. The other avenues involving medical comorbidities and adjunctive treatment are important too, but we all must remember that kindness and care remains the first necessary steps in successful recovery.

Thinness Does Not Give Our Lives Meaning

The drive for thinness is at the heart of the eating disorder epidemic. Countless research studies show that the insidious nature of glorifying thin bodies through all types of media convinces us to believe that losing weight is the way to a good life. Short-lived cultural shifts towards accepting different human bodies never last long. Too many forces in our society benefit from an audience captivated by thinness and susceptible to any market force that promises the miracle of weight loss.

I have written before in this blog how industry benefits from the drive for thinness. The diet industry promises the magic goal of weight loss even though research has proven unequivocally that diets don’t work. The exercise industry focuses on weight loss despite evidence proving health benefits but not sustained weight loss from regular activity. The food industry plies us with a smorgasbord of supposedly healthy foods and simultaneously the most delectable options when everyone gets too hungry. And now the pharmaceutical industry finally gets to offer the holy grail for weight loss.

A capitalist society can’t get enough of a public willing to spend their last dollar on the promise of sustained weight loss.

There is one other weakness in this moment that heightens our vulnerability. Modern life isolates each of us in our bubble, surrounded by technology, addictive content providers and the increasingly limited ability to find connection and satisfaction in other parts of our life. Technology may make things easier in some ways but doesn’t replace our human need to find meaning in relationships or the ways we interact with the world. Passive movement through the world fills our time but doesn’t allow us to experience the world fully. Our brains are wired for interaction and engagement in order to feel satisfied. Experiencing content on its own won’t suffice.

Increasingly, the desire to lose weight is one of the primary ways people search for identity and meaning. The goal of thinness itself is empty which is why people are never satisfied with the results. That drive to lose weight at all costs, when particularly strong, often becomes an eating disorder.

The forces for thinness are broad and powerful. These days no other goal is equally revered or desired.

We need to constantly be reminded that other avenues for satisfaction in life exist. Instead, powerful industries constantly urge to follow the desire for thinness and hope for the best. The central force for weight loss and the epidemic of eating disorders is societal. Messages promoting weight loss push us towards this meaningless desire each and every day.

In the end, the apotheosis of thinness in our culture begs a question: why is it so hard for the modern human to figure out what actually matters in our lives?