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.

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, so I let her know she could take 5 mg once a day, or half a pill twice daily. She felt a surge in MCAS symptoms (specifically flushing and hot flashes, abdominal cramps, and itching which some refer to 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.

As ever, we review Melinda’s symptom list to see how things are going.

What’s fully resolved

Alcohol intolerance (feels allergic, face gets hot, digestive distress, depression worsens) because she is no longer drinking

Reaction to brightly artificially dyed foods/drinks (gets a variety of above symptoms) because she is avoiding these now

Reactions to artificial scents are much lessened as she’s removed most of these from daily life

Drippy nose after eating, no sinus infections

She felt fine after recent air travel with no mast flu symptoms

What’s improved since a month ago

Digestive distress after meals (burning/sharp pain, severe reflux, fullness/bloating, nausea, diarrhea alternating with constipation): The pain, reflux, and nausea are much improved and sometimes not present. The diarrhea alternating with constipation and bloating remain.

Heat intolerance (skin turns red/gets hives, gets super sweaty, feels exhausted, gets edema, brain fog) is a bit better as she’s learned to stay out of the heat and actively cool herself off

Edema (feet/hands/belly) is a little better but still distressing when present

Skin changes (lacy hives on chest, neck, and face worse with high emotion, random rashes, hyperreactive to bug bites, dermatographia, general itchiness even without rash, cystic acne)

Headaches have lessened

Her most recent period was actually a lot better than it has been, both in terms of cramps and mood swings

About the same as before

Body pains/joint pains that migrate depending on the day

Easy bruising

Dizziness and fast heart rate worse with standing, even when hydrated

Nutritionally, Melinda’s AN voice still gets really activated when she has edema, and she admits that reading some blogs on MCAS were triggering in seeming to offer the answers to all problems with “low inflammation,” vegan, or all organic/non-processed solutions. I validate the triggers; it sounds so appealing to believe a variant of what all of us are told every day! That if we “just” eat exactly right as defined arbitrarily by someone else, all our problems will resolve, and we’ll be safe. Of course, things are rarely this easy. And you could set strong proponents of veganism against strong proponents of the keto diet and never see either of them give any ground to the other! Both are sure they are “right,” even though each one’s rules are utterly different from the other.

Of course, as an eating disorder provider, what I recommend and personally live (myself, and for my own kids) is to eat with as few restrictions and food rules as possible, to nourish abundantly, satisfyingly, and consistently, and to think about balance and variety not meal-to meal but over the course of a couple days. All pasta dinner one night that was fully satisfactory and just in a carb mood? You’ll likely have some more proteins, fats, and fresh foods tomorrow or the day after.

The challenge is that in the early days of MCAS treatment (to be clear, these early days could last 6-12 months potentially) and during reactive flares, people can feel unbelievably ill after eating. This not only then makes their bodies and brains feel worse, but it totally reinforces the ED voice that was whispering the whole time, “We knew this wasn’t safe. We should restrict.” There are plenty of people with MCAS who develop food intolerances with or without changes in weight who never develop an eating disorder, of course. Medically speaking, malnutrition is malnutrition, and our clinic often cares for those with MCAS who have developed medical complications of malnutrition even when no eating disorder has developed.  

Melinda has been so focused on trigger recognition/avoidance and mediation initiation that she’s had minimal energy to challenge her ED voice and push forward with nutritional rehabilitation. Her MCAS also makes her uncertain what to eat. She’s been told for so many years that all of her restrictive habits and food fears are due to her ED, and I name this as an element of medical trauma that is going to take a long stretch of reparative care to start to heal. I share that negative conditioning (where a person or animal learns to avoid a behavior consistently in order to prevent a painful or adverse outcome) has been proven to be exceptionally powerful. That is, for the past several decades, eating certain foods has caused her to feel so crummy due to MCAS that she has been conditioned to fear and avoid foods above and beyond the dictates of the ED. Providers who doubt this clearly live in a state of immense health privilege. I remember a few years ago I got a sudden intense stomachache one night (when I’m used to feeling fine). It lasted maybe 20 minutes, but in that time I realized I was already wondering to myself if something I ate had caused it, and how I could prevent its ever happening again. That was after one episode of pain that lasted 20 minutes! (It wasn’t related to food; it went away and never recurred.) That night made me all the more compassionate for my patients who live with reactive pain every single day. Of course food gets terrifying. The pain has conditioned them to fear and resist food!

Melinda also constantly has the thought that since she’s not officially underweight, she’s probably fine and fears gaining lots of weight if she starts to eat more as recommended. I validate that this fear gets reinforced constantly by those who benefit from fostering diet culture and from those who don’t yet understand the true science at work here. I help her understand that metabolism is highly dynamic: eat less, and the body finds a way to use fewer calories a day in order to preserve weight. Eat more, and the body responds to this plenty by burning more calories every day. Of course, at some caloric intake point, weight will rise. In addition, bodies that have been starved will often find a way to gain as soon as they have access to even a little more food. This is biological, life-saving as far as the “cave person brain” is concerned, and has nothing to do with a “broken metabolism.” For every person, regardless of body shape and size, what is happiest and healthiest for our bodies is to eat enough satisfying food consistently throughout the day, without arbitrary rules.

Fortunately, Melinda has a great eating disorder dietitian who is entirely open to learning about MCAS and has already started to do so. I encourage Melinda to focus on the foods she can consistently tolerate without MCAS reactivity, and increase her intake of these until she’s consuming enough to meet her daily needs according to her dietitian. It’s boring to eat this way, no doubt. Living with MCAS requires a huge amount of distress tolerance, and some days that comes more easily than others. We talk about the likelihood of our needing to start addressing other digestive issues soon, such as probable small intestinal bacterial overgrowth (SIBO), in order for her MCAS to settle better (ongoing inflammation from SIBO will drive ongoing MCAS reactivity) and for her to tolerate a broader array of foods. Right now she’s feeling a little too overwhelmed to add anything else. If she’s too limited in her non-reactive foods to meet her nutritional needs, there are a variety of elemental shakes that can be made; none of these taste great (some find them intolerable), but they’re an option. If she’s so reactive and cannot tolerate the taste of the elemental shakes (particularly problematic for those with Avoidant Restrictive Food Intake Disorder, ARFID), then we may have to consider a temporary feeding tube at home with purely elemental tube feeds like Vivonex (in the US) that will nourish her body without activating her MCAS.

Always at the back of Melinda’s mind is her rapid heart rate, nearly passing out at times, worse with standing. We talk openly about how we cannot officially diagnose Postural Orthostatic Tachycardia Syndrome (POTS) while she’s actively restricting and nutritionally deficient, because oftentimes nutritional rehabilitation resolves heart rate discrepancies between sitting and standing/walking. However, this diagnosis is still out there for us to consider. I let her know that if she does have POTS, it won’t get better until her MCAS is under good control, so we’re already making strides toward improvement. In the meantime, I encourage her to take in at least 3000-5000 mg of sodium a day and to hydrate well, 2-3 L of non-caffeinated fluids a day (64-96 ounces). That sodium can be taken in via food (the yummiest way), or if she finds that unpalatable or cannot get enough in through food, then she can supplement with salt tablets or electrolyte supplements in their water. In the US, the two water additives that my patients have liked best are LMNT (www.drinklmnt.com) and Normalyte (www.normalyte.com). A liter of normal saline contains 9000 mg of sodium. When someone is dehydrated, it’s not uncommon to give them 1-2 L of saline. A (dye free) Gatorade has 270 mg of sodium, i.e., not that much. By contrast, one envelope of LMNT has 1000 mg of sodium (added to 20-32 oz or around 1 L of water). Normalyte contains around 2000 mg of sodium per envelope (in half a liter/16 oz); it’s formulated per WHO recommendations for oral rehydration. My patients also like Salt Stick Vitassium to get in more sodium, if they cannot tolerate salty-tasting water. She worries that taking in all this salt will worsen her edema; I note that it might, but since she’s otherwise young and healthy with good kidney function, more likely it will help support her autonomic nervous system and cardiovascular stability.

As we think about next steps in medical management, Melinda tells me that her joint and muscle pains are among the most intrusive, intense symptoms that she’d like to address. The edema and skin rashes are also very problematic to her as people comment on her skin redness, and her ED recovery work mandates that she get less reactive to foods. I let her know that most likely, when we get her on the right regimen for her overall MCAS, her edema is likely to go away with time (there are exceptions where edema just persists and persists despite every medication I can think of!).

Every 4 weeks or so, we make one medication change in order to see what helps and what doesn’t. We start by adding compounded low dose naltrexone (LDN) at 1 mg compounded capsule every morning for a week, then 2 mg daily for a week, then 3 mg daily for a week, then 4 mg daily for a week (prescribing enough 1 mg capsules for this slow increase through month 1). Then in month two we start the goal dose of 4.5 mg daily. LDN can take 3 months at the goal dose to really see full benefit. This can really help with pain, digestive motility and healing, and general nerve function stabilization and reduction in inflammation.

Once she’s been on LDN at goal dose for a month, we might next add quercetin 500-1000 mg twice daily as a good herbal mast cell stabilizer, usually helpful for most with MCAS. The yellow color is natural, not artificial. Good brands include Pure Encapsulations Quercetin Ultrasorb and Jarrow Quercetin.

A month later as symptoms improve but not sufficiently, I suggest that she double her montelukast to 10 mg twice daily, still watching for a serious shift in mood. Melinda feels a little overwhelmed by the intensity of her medication list but is willing to try given her improving health.

Three Months Later

Melinda has met with me monthly for the past three months. Her medication regimen now looks like this:

Levocetirizine 2.5 mg (half a tablet) twice daily

Pepcid (famotidine) 40 mg twice daily

Cromolyn 3 ampules four times daily

Singulair (montelukast) 10 mg twice daily

Compounded low dose naltrexone 4.5 mg every morning

Quercetin 500 mg twice daily

Ketotifen 2 mg nightly (when 1 mg twice daily was too sedating)

Dye-free ibuprofen 400 mg twice daily (an anti-inflammatory that really helps some with MCAS, and for others is a real trigger…only experimentation will tell; incidentally the prescribed COX-2 inhibitor Celebrex/celecoxib is probably better tolerated long term and may be more helpful with reduction in pain and inflammation)

What’s fully resolved

Alcohol intolerance (not drinking)

Reaction to brightly artificially dyed foods/drinks (not consuming dyes)

Heat intolerance (can manage short stretches of heat but mostly stays cool)

Reactions to artificial scents

Drippy nose after eating, sinus infections, headaches

Air travel

Cystic acne and itchiness

Terrible periods

Easy bruising

What’s improved

Hives, but they still come up as random redness/lacy rash a couple times a week

Digestive distress (and she’s ready to address SIBO now)

Edema (feet/hands/belly)

Body pains are much rarer than they used to be

Dizziness and fast heart rate when standing, much better since adequate sodium intake, MCAS improvement, and hydration, but still an issue

Melinda has stabilized nutritionally with her dietitian’s and therapist’s support and with MCAS treatment. She’s eating enough each day, and she tolerates a moderately wider range of foods than before. Her ED voice is quieter than it used to be, and she realizes how much better she feels at work and in her life when she’s nourished and has MCAS under reasonable control. However, the food limitations and remaining symptoms are still meaningful issues.

I suggest to her that we now add omalizumab (Xolair) 150 mg subcutaneously injected each month for the indication of chronic idiopathic urticaria (CIU, meaning hives that come up for no clear reason. This is one of her MCAS symptoms and one of two indications for which Xolair is officially approved, the other being persistent asthma). I note that addition of Xolair can often really help patients cross over to tolerating far more environmental exposures, as long as insurance will pay for it. I respect that in many other countries, this medication will not be available. When it’s prescribed, I’ll need to document the entire medication list she’s on, despite which she’s still getting hives, for it to be preauthorized, and even then sometimes a non-allergist will have trouble getting this approved. She’ll need to get this injected at an infusion center monthly for the first three months to be sure she won’t have an allergic reaction to it, and then usually it can be sent to her home, and she can learn how to administer it to herself.

Melinda is feeling a lot better, and her ED is much more stable. Since she’s ready to work on SIBO and her digestive symptoms now, I’ll turn to that topic in the next blog.