Avoidant Restrictive Food Intake Disorder (ARFID) is an eating disorder that is characterized by selective or restricted eating leading to inadequate nutrition. Unlike other commonly recognized eating disorders such as anorexia nervosa, ARFID is not fueled by a desire or drive for thinness, fear of weight gain, body dysmorphia, or other body image disturbances. It’s important to note that some common eating disorder treatment efforts, such as body image exercises, might not be applicable to people with ARFID while others, such as working through a fear food hierarchy, might be similar. Identifying treatment providers familiar with the psychological, medical, nutritional, and social impacts of ARFID, which was the most recent eating disorder diagnosis added to the DSM-V (aka the handbook for mental health diagnoses), is important for proper care and recovery support.
(CW: Longstanding anorexia nervosa and discussion related to Dr. Gaudiani's article on "terminal anorexia nervosa")
Dr. Gaudiani remains committed to the continued conversation generated by her 2022 journal article on "terminal anorexia nervosa" (please note that Dr. Gaudiani has since retracted the term "terminal anorexia nervosa"). Part of this work is ongoing reflection and clarification about this tiny fraction of people with eating disorders. In a recent abstract in the Journal of Pain and Symptom Management, the author stated that, "Severe Enduring Anorexia Nervosa (SE-AN), also known as 'terminal anorexia,’ is a rare, but life-threatening progression of restrictive and other eating-disordered behaviors". As the publication does not accept letters regarding abstract articles, Dr. Gaudiani wanted to share her response with the hope of providing ongoing clarification and feedback.
Bulimia nervosa is a serious eating disorder that is defined by recurrent episodes of binge eating with recurrent occurrences of compensatory purging behaviors such as self-induced vomiting, laxative/diuretic/enema abuse, overexercise, or fasting. While it is primarily a psychological disorder, it carries serious medical risks and complications. There is a lot of overlap in the diagnoses of eating disorders involving purging, and people can oscillate between diagnoses depending on behaviors and weight changes. I think it is important to note that the following information can apply to any of the eating disorders with purging including bulimia nervosa, anorexia nervosa-binge/purge type, and atypical anorexia with purging.
What’s in a name? Let’s talk about “atypical anorexia nervosa.” (AAN) First of all, I hate the name and location within the DSM5. It’s embedded under “other specified feeding and eating disorders” (OSFED), which sounds like a technicality until you realize that many insurance plans specifically exclude OSFED diagnoses for any higher level of care coverage. Then it’s clear how important it is.
In Parts One, Two, and Three of this blog series, I talked about why managing MCAS along with eating disorders matters, how we diagnose it, and the essentials of treatment. In Part Four, I’ll consider how we continue to tune medication regimens depending on how symptoms go.
Melinda returns a month after starting MCAS treatment, which included really paying attention to and minimizing triggers, starting four medications, and working on her nutrition.
We start with a review of her medication list. I had prescribed over the counter levocetirizine (Xyzal) 5 mg daily (bumping up to twice daily if tolerated), pepcid 20 mg twice daily, cromolyn ampules (Gastrocrom) on a slowly increasing schedule, and montelukast (Singulair) 10 mg daily. Melinda notes that she got a really dry mouth when she increased her levocetirizine to twice daily and so stuck with once a day. She felt a surge in MCAS symptoms (specifically flushing and hot flashes, abdominal cramps, and itching which I name as “mast flu”) each week that she increased her cromolyn dose, but now she’s tolerating 2 ampules four times a day (about 30 minutes before meals when possible, and at bedtime) just fine. She has not noticed any surge in depression or suicidal ideation on the montelukast.
Now that we’ve reviewed why mast cell activation syndrome (MCAS) matters for those with eating disorders in Blog One and how it’s diagnosed in Blog Two, let’s turn to treatment. This blog will review essential concepts in treating MCAS, while subsequent ones will focus on care of more specific populations like those who do not respond (or not adequately) to initial care protocols, those with postural orthostatic tachycardia syndrome (POTS), those median arcuate ligament syndrome (MALS) and superior mesenteric artery (SMA) syndrome, those with long Covid (LC), those with complicated digestive issues including small intestinal bacterial overgrowth (SIBO), etc.
It was really exciting to hear back from so many of you after posting Part One (What is MCAS, and why should people with eating disorders care?). People replied from all over the world having realized this pertains to them or their loved ones. Most people’s outreach ended with, “So how do you diagnose it, and how do you treat it?” Part Two will address key issues in MCAS diagnosis, and Part Three will start to consider treatment. As the blog series continues, I’ll try to address specific crossover populations, like those with postural orthostatic tachycardia syndrome (POTS) and MCAS, those with median arcuate ligament syndrome (MALS) or superior mesenteric artery (SMA) syndrome and MCAS, and more…
Mast Cell Activation Syndrome (MCAS) & Eating Disorders | Part One: What is MCAS, and why should people with eating disorders care?
By Jennifer L. Gaudiani, MD, CEDS-S, FAED
I have been planning to start writing this blog for about the past three years, which was a year or two after I started seeing patients with mast cell activation syndrome (MCAS). But it took me this long, and my recent attendance at a great MCAS conference with all the key clinicians, to feel I had enough expertise to write about it. I’m still learning every single day! To my knowledge, there aren’t any other blogs out there about MCAS and eating disorders, but I’m totally convinced these two issues go together, sometimes in development of and for sure in maintaining an eating disorder (ED). Time to shine light on this and improve care!
With ever-changing recommendations regarding the evolving COVID-19 virus, it can be difficult to understand what you’re supposed to do if you test positive for COVID-19. Gaudiani Clinic nurse, Abby Brockman, RN, has summarized current recommendations in case you or someone in your life tests positive and must isolate.
In addition to an increased incidence of dental decay and disease, recurrent self-induced vomiting from either anorexia or bulimia nervosa can lead to multiple medical complications of the mouth and throat. The muscles of the upper esophageal sphincter, which acts as a gateway to the esophagus, become dysfunctional with chronic purging which more easily allows stomach acid and enzymes to reach the throat and mouth. This type of reflux is known as laryngopharyngeal reflux (LPR), and commonly causes symptoms such as…
While it’s well known that eating disorders affect your overall health, one facet that may be overlooked is the impact an eating disorder has on your oral health. In addition to your physician and healthcare team, partnering with a dentist throughout eating disorder recovery efforts can greatly increase the likelihood of long term oral health and stability, as well as preservation of the teeth and gums…
Many people are familiar with the concept of “gaslighting.” For those who aren’t, it comes from the 1944 Academy Award-winning movie “Gaslight” starring Ingrid Bergman, in which a husband slowly manipulates his wife into going insane. She sees, among other things, the gaslights in the house flicker and dim, but her husband tells her she’s imagining it…while he is the one deliberately causing the lights to flicker. These days, we use the term “gaslight” to describe someone invalidating another’s perceptions, whether deliberately or not, making the other question themselves and their insight in ways that are really psychologically harmful.
So, let’s apply this to the experiences of individuals with eating disorders in the doctor’s office…
Hypermetabolism is a phenomenon seen during the journey towards recovery from anorexia nervosa. When a person is actively restricting calories, the metabolism becomes very slow. With very little food coming in, the body is already having to ration available energy towards life sustaining functions like pumping the heart, breathing, consciousness, movement, etc. The body is in energy conservation/hibernation mode at this point, doing everything in its power to keep the body alive in the face of starvation. When a person takes steps toward recovery and weight restoration…
Trauma-informed care for me starts with asking permission. This can look like asking permission to do a procedure, asking permission to talk about a difficult life event, or asking permission before starting a physical exam. However, the key to this is being prepared to stop if I am not given permission, even if I think completing the task is beneficial to the patient. Allowing the patient to maintain full autonomy of their body and mind while in a doctor’s exam room is vital. It’s amazing how much I can learn about someone by just actively listening, without interruption, to their lived experience. Being able to bear witness to another’s story is truly a privilege and can be healing for both storyteller and listener. Allowing genuine time to get to know my patients (and them me) allows us to build a trusting and solid patient-physician relationship. Once I have a good sense of who my patient is, I can create a medical plan that aligns with them as a whole person and not just a diagnosis…
My path to the Gaudiani Clinic came about in a very serendipitous way. Starting back in my pre-med days, I went to Florida State University and received my undergraduate degree in Nutrition and Food Sciences. Most of my classmates were dietetics majors, and I developed huge respect for them; I always thought it would be awesome to incorporate a dietitian in my future medical practice for this reason. I went on to do medical school at Florida State University and did not know which speciality I wanted to pursue until the end of my third year. I enjoyed all my rotations and wanted to continue a broad training so I chose family medicine. I interviewed at 15 residency programs across the country and matched my first choice at Saint Joseph Hospital in Denver, CO. My residency was challenging with a lot of time spent on the obstetrics and intensive care unit floors in the hospital. Our clinic was very busy, broad spectrum, and cared for an urban, underserved population. After residency, I joined a Denver medical group and practiced outpatient primary care for 2 years. At this point in the story, you are probably thinking, “I don’t see anything about eating disorders yet.”
The COVID-19 pandemic has rocked our world. It’s caused unprecedented stress and anxiety, contributed to record high unemployment, cancelled life celebration events like weddings, funerals and birthday parties and made us all feel uneasy about our futures. Unfortunately, what has also come up in response to the pandemic from the dieting, “wellness” and social media industries is the “COVID 15” with inappropriate memes disguised as comedy demoralizing certain bodies and body changes…[read more]
With various states starting to ease quarantine recommendations, the question is: what will actually make alterations in quarantine medically safe, or at least safer? These are the criteria I’m using for my family (appreciating our privilege that we can work and do school from home safely and comfortably) and for our clinic…
Updated from the medical literature[i] and CDC[ii], we now have a more extensive list of common symptoms associated with COVID. An affected individual may have only a few of these…
As an outpatient internist who specializes in eating disorders, I regularly talk about weight goals in anorexia nervosa treatment with patients, families, and professionals. This is a critically important topic. Its complexity cannot be overstated, but I wanted to blog about some of the key themes I consider in hopes that it will help guide and clarify. I’d like to start by saying that I will make no distinction between individuals with the DSM-5 diagnosis of “anorexia nervosa” and those with so-called “atypical anorexia nervosa.” The latter have anorexia nervosa that doesn’t happen to result in a visibly emaciated body. I protest on grounds of sizeism: we don’t differentiate “low weight depression” from…
The CDC recently updated its recommendation regarding the widespread use of masks when in public spaces. Previously, the CDC advised against the use of masks except in those who were actively ill. Last week the CDC announced that in addition to social distancing measures everyone should wear a cloth face mask/covering when out in public.