By Jennifer L. Gaudiani, MD, CEDS-S, FAED

As a reminder, the Gaudiani Clinic blog is medical information and not medical advice or professional consultation. The Gaudiani Clinic is unable to provide medical advice to individuals who are not our patients. If you have questions or concerns about your health, please reach out to your medical provider or schedule a consultation with our team.

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!

A Case: Melinda

Let’s start with a pretend case.

Melinda is a 29-year-old cisgender Caucasian nurse with atypical anorexia nervosa (you know I hate this term: it’s just anorexia without the emaciation, and it’s not atypical! In fact, we’re just going to call it anorexia nervosa (AN) from now on). She presents to my clinic with worsening edema (swelling), fatigue, lightheadedness when she stands, reflux and abdominal pain after eating which sometimes goes along with diarrhea, sometimes with constipation. She has anxiety and depression. Melinda has had a big GI workup done (upper endoscopy, colonoscopy, and gastric emptying study) which has been normal except for some “mild diffuse erythema (redness)” in her stomach. She was told it’s “just IBS” and because she has both diarrhea and constipation, there aren’t really any medications that can help. She was advised to try a low FODMAP diet which her eating disorder loved, and which made her feel a little better for a couple weeks, but then her AN voice got so loud that she realized she needed to ease up on the food rules. However, as she returned to eating more variety and volume, she felt even worse digestively and noticed worsening edema and depression. Realizing this was all getting in the way of her recovery work, she came to the clinic.

I start as usual by asking Melinda what her goals and values are, as these will be the North Star of our work together. She wants to keep her nursing job after working so hard to get here professionally, she wants to be able to care for herself with more compassion and knows that means recovery work, and her values are relationships, loyalty, and honesty. We continue through the initial consultation with her telling me the story of her life and then of her eating disorder which started when she was 13, when she started eating less due to digestive distress after meals, lost some weight, got universal praise from everyone in her life, and then went down the rabbit hole of her AN. She’s been better and worse, never formally underweight, since then. After a trip to Africa during college where she developed a three day illness with vomiting and diarrhea, she noticed her overall GI distress was worse, and she noticed feeling faint after standing, with a heart rate that seemed too fast compared with what she was doing. EKGs were always normal. Doctors have mostly told her she’s “sensitive” and to try and work on stress management. She thinks she might have POTS (postural orthostatic tachycardia syndrome).

When we get to the part of the initial consult where we talk about medical issues in detail, I ask her if it would be okay for me to start by going through a series of seemingly unrelated symptoms to get a better sense for what’s going on, since I have my suspicions. She agrees. Here are my questions and her answers:

 

How do you feel when you drink alcohol?

I never drink alcohol because it’s like I’m allergic to it. My face gets so hot after even one glass of wine, and I feel sick for a few days afterwards. I almost feel like my depression gets worse right after I drink too. I’m happy to use marijuana edibles at times, but I can’t drink.

How do you feel in the hot seasons vs. the cold seasons?

I’ve always preferred the cold, except when my restriction is at its worst and I’m cold all the time. I always feel better from late fall to early spring. In the summer I just feel exhausted. Sometimes I feel allergic to the sun because I can turn bright red, even when I’m wearing sunscreen.

Do you get more tired and/or edematous (swollen) in the heat than your peers?

For sure. If I’m out with friends for a couple hours, my feet get tight in my shoes, and my rings don’t fit. I kind of feel brain foggy for a while after I’m out in the heat. Hot tubs don’t agree with me either.

Tell me about your edema.

It’s so triggering and so frustrating! It messes with my body image constantly. I feel like some days I’m just bigger all over, but especially my feet, hands/fingers, ankles, and belly. Like over a week I sometimes feel like my clothes fit fine, and other days they’re so tight and my brain just breaks! A doctor a few years ago tried me on diuretics, but they did nothing but make me feel lightheaded and thirsty. I don’t purge, so I know it’s not rebound edema. I just don’t get it.

Are you a rashy person?

Yes! I’ve been to like three allergists, and they all tell me they don’t know what the triggers are or just recommend steroid cream. When I’m feeling emotional, I turn bright red and warm on my neck, chest, and face. People always comment on it. But I could just wake up one morning and have a rash on my arm that stays a couple days then goes away. I’m often itchy too, even when I don’t have a rash, especially after I work out or come out of the shower. When I get a bug bite, it just blows up. And if I write my name with my fingernail on my leg, you can totally see it like a raised red line for 10 minutes after. My mom and sister have the same thing. I don’t know if this is related, but I got cystic acne when I went through puberty, and my self-consciousness about my acne has definitely been a factor in body image and my ED.

What does it feel like in your stomach after meals?

It’s kind of a burning feeling, but it can also be sharp, and my reflux gets worse. I feel full and bloated really quickly, and I get nauseated on and off. By the end of the day my stomach is so distended that it’s a big trigger for my ED. Then one day I’ll have diarrhea, and later that day I know I have to poop but I can’t push it out, and when it finally comes out, it’s rock hard. My dietitians have always told me that it’s all due to my restriction, and if I just ate a regular meal plan consistently it’ll go away, but honestly, I’ve pushed myself to do that, and I just feel worse. They tell me it’s my eating disorder talking. It doesn’t feel like that, but I don’t even know anymore.

Are you sensitive to smells?

Totally. If someone wears strong perfume near me, I get a headache right away.

Do you get stuffy or a drippy nose after eating? Are you a sinusy person?

Actually, yes, but I never really thought about the drippy nose after meals before. I have like three sinus infections a year. My ENT says I might need surgery.

How are your periods?

AWFUL. I seriously feel allergic to them too. They are so heavy, and I get cramps that kept me out of school as a teenager and sometimes still keep me home from work. I wish I could get rid of them, but when I tried the Pill a few years ago it made me feel terrible mentally, and I’ve been too nervous to get an IUD because I can’t even stand to get a pelvic exam because of the pain. My digestion is worse, I feel feverish, and my mood is awful during my periods. Suicidal ideation definitely shows up from the week before my period until it’s gone. I’ve always had really irregular periods, and years ago one gyn thought I probably had PCOS.

I noticed you have a fair number of medication allergies.

Yeah, from all the sinus infections, I’ve been on a bunch of different antibiotics, and it seems like more and more, I just react to medications. Like I get a bad rash or my throat feels kind of tight.

Do you get joint or body pains?

Yes, but it’s like they migrate. Sometimes it’s knee pain, sometimes it’s in my fingers, sometimes my chest, sometimes my ankles. I just hurt. I guess I probably have fibromyalgia.

Do you bruise easily?

For sure. I don’t even know how I got them.

By any chance do you feel crummy or like you got sick for a couple days after air travel?

Yeah actually. I kind of dread going on trips, but I just thought I liked my routines. But I do usually feel sick after going on airplanes.

Have you ever noticed if you feel worse overall after eating brightly dyed foods?

I’ve never noticed that. I did get a headache and a stomachache after I had birthday cake on shift the other night, but I thought it was due to the sugar. When I drink Gatorade for my dizziness, I do feel worse, but I thought that was just part of the dizziness thing.

Ok, one last question, and then I promise I’ll tell you what I think is going on. Do you have any memories of ANY of these symptoms starting or getting worse around the time you started your period for the first time?

That seems so long ago. But yeah, I guess I had constipation and got rashes when I was in elementary school, but my depression and anxiety really kicked in in middle school around the time I got my first period. And that’s when I started noticing that every time I ate, I didn’t feel well, and you know what happened after that.

***End Case (for now!)***

 

I bet some of you reading this are thinking, “Oh my gosh, some of those symptoms sound so much like me (or my sister, son, friend, etc).” Anytime I lecture on this topic, at least one person reaches out to me afterwards and is like, “You’re describing me!” or “I have a patient (or 4) who has this!”

So in this Part One blog, I’ll share with you some essentials about what mast cell activation syndrome (MCAS) is. We will follow Melinda throughout the blog series. For a really phenomenal and thorough review if you can’t wait for the next chapters of this blog, you can check out this article by Drs. Dorff and Afrin. Don’t let its focus on pregnancy fool you…it’s one of the best review articles generally of MCAS that I’ve ever read.

We all have mast cells, which are part of the white blood cell family in the immune system. They tend to live near blood vessels and nerve endings and are especially present where you and the world interact directly: mouth, gut, skin, genitourinary system, and lungs. Mast cells either contain or have the capacity to stimulate over a thousand mediators, among them histamine, heparin, and many inflammatory factors. When mast cells are well-behaved, they only release these factors in specific circumstances, like anaphylaxis or a locally due to a bug bite.

However, around ten years ago, a group of doctors started noticing that misbehaving mast cells appeared to account for the seemingly unrelated, often severely debilitating, multi-organ symptoms some patients experienced. Often these patients were treated separately by asthma specialists, GI doctors, ENTs, and dermatologists, all of whom were puzzled at the patient’s lack of response to typical care. These were patients whose doctors had told them for years “it’s all in your head,” or “you’re just sensitive,” or “you have a somatization disorder.” Such conclusions from powerful and trusted clinicians were devastating and deeply undermined patients’ sense of themselves, their trust in their bodies, and their ability to believe their own symptoms. Sound like familiar challenges for another patient population we know and love? The majority of patients were woman, hearkening back once more to historic allegations of “hysteria” (where the “wandering uterus” was believed long ago to cause the inexplicable and unmeasurable symptoms those pesky women seemed to complain of).

The good doctors who started to put the pieces together recognized that when mast cells inappropriately release their mediators, it could cause all they symptoms the patients were experiencing…and indeed, when they started treating them with a variety of medications both to block the effects of the mediators once released, and to stabilize the mast cells so they were less likely to detonate, patients got better. They named this mast cell activation syndrome. Since then, they estimate that up to 17% of the population has MCAS! However, some barely have any symptoms at all and never worsen, others have ultra-severe symptoms and end up in inexplicable anaphylactic shock in the hospital weekly, while the majority fall in between. Each person’s presentation, severity, triggers, and treatments are unique.

Now, as I’ll discuss in the ongoing parts of this blog series, diagnosis and treatment can be really challenging. Many doctors still have never heard of MCAS or have but don’t believe in it. (Thanks, guys.) I only learned about it around 2017, when I was deep in researching the literature to get better at POTS management. (Teaser: probably many cases of POTS are fueled by uncontrolled MCAS.) Since then, I’ve seen sooooo many patients with MCAS and a concurrent eating disorder, and I’ve learned a ton. I keep getting humbled by this complicated disease, and then my patients teach me more, I learn more from experts, and I just keep trying to get it more right.

I’ll leave you with this thought for Part One: MCAS is a systemic illness that gets worse with stress (including malnutrition stress), remains undiagnosed for years, leaves patients gaslit in their experience of their bodies, worsens with everyday triggers (like food!) when in flare, often leads to very complicated relationships with feeding oneself, and is poorly recognized currently by eating disorder clinicians. For patients like Melinda, a major activation event around the time of puberty (because mast cells are very sensitive to estrogen) clearly contributed to her initial restriction, and then society’s ultra-sick relationship with thinness and weight loss fostered her anorexia. Subsequently, ongoing symptoms, some of which she didn’t even realize were abnormal (sick after air travel??) made it much harder medically for her to recover from her eating disorder.

I’m confident that there’s an even higher prevalence of MCAS in those with eating disorders than in the general population, and that proper identification and treatment will prove a major advance in the treatment of eating disorders. Come with me on this journey exploring MCAS and eating disorders, send me stories (of suffering, of harm, of triumph) and tips, and let’s inform the whole field about this so that soon every single patient with an eating disorder will be routinely screened for MCAS and be treated early and well.