Surviving with MCAS Away from Home

This post provides tips and tricks for surviving with MCAS away from home.

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What is MCAS?

Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. MCAS is serious and disabling and people with MCAS experience often significant and debilitating symptoms daily, including anaphylaxis, which can be fatal.

MCAS is often found in combination with other chronic conditions such as Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Frequently healthcare providers do not know about MCAS, and the tests for MCAS are problematic because they are not uniformly reliable. MCAS can be difficult to manage. Treatments include blocking mast cell mediators with anti-histamines and mast cell stabilizers, as well as avoiding triggers.

Check out this post on how to manage MCAS.

Surviving with MCAS away from home

The following material does not constitute medical advice. This information is for information purposes only and is not intended as a substitute for professional medical advice, diagnosis, cure, or treatment. Always seek advice from your medical doctor.

If you have Mast Cell Activation Syndrome (MCAS) you will likely experience challenges when you are away from home. In this post, I share tips and tricks I have discovered to successfully travel, eat, and stay comfortable while away from home.

Come prepared

If you are like me, when you are away on a trip you are more likely to think you can get away with carrying less rescue gear, be more likely to try to get away with eating more adventurously and have a more cavalier attitude about potential issues that can arise. To an extent, yes, it’s great to let down your guard a bit while you are on a trip. Take deeper breaths. Explore untraveled paths. Try not to overthink things. And get out of your head.

But to make trips safe and doable there are some caveats to that plan for people with Mast Cell Activation Syndrome (MCAS) or other chronic illnesses. You still need to follow your tolerated food diet. You still need to take your medications and daily maintenance treatments. Pack your nebulizer (there are portable car versions). And bring the supplies that will keep you safe and comfortable.

Know your food triggers

For eating on trips you may want to share the list of possible food triggers with family members or hosts where you will be staying or sharing meals. That way they can plan ahead, ask you questions, or you can let them know that you will be bringing what you need to eat safely and they need not worry about it. Here is a list of common MCAS food triggers. Your triggers will be unique to you, so this should just be considered a starting place.

• Unfiltered Tap Water (chlorinated, heavy metals)
• Caffeine & Alcohol  (DAO inhibitors)
• Charred/ Burnt Food (especially animal meat/skin)
• Leftovers, Aged foods, Fermented foods, Pickles, Preserves, Olives
• Vinegar (especially rice vinegar)
• Soy Sauce and Soy Products
• Shellfish (Crabs, Prawns, Shrimp, Lobster, Crayfish, Squid, Calamari, Octopus, Mussels, Clams, Oysters, Scallops)
• Bananas
• Citrus Fruit
• Avocado
• Eggs
• All Legumes
• Spicy Food
• Sugar Substitutes
• Salicylates (stevia, etc)
• Oxalates, Salicylates, Lectins
• Additives (colorants, flavors, gums, Sulphites, Preservatives such as Sodium Benzoate)
• Glyco-phosphates in non-organic vegetables
• Gluten
• Nightshade Family vegetables (Tomato, Eggplant, Potatoes, Goji Berries, Peppers)
• Strawberries, Raspberries, Pineapple, Pears, Kiwi Fruit, Papaya
• Nuts (especially peanuts, walnuts, and cashews)

The bucket theory

Keep in mind the Bucket Theory analogy for keeping within a safe level on a trip. “You could think of your body as an empty bucket. Different foods and activities fill your histamine bucket at different speeds but combine to form the total level of histamine in your body. If you can keep your bucket at a lower level, you may feel better because a fuller bucket could mean you have more symptoms. Managing triggers, reducing exposure to known triggers, and taking medication could all help to manage the level of your bucket.”

Traveling itself can be stressful and raise the level of your bucket. Add to that eating in unfamiliar places, having to source foods and things you may have inadvertently forgotten to pack more unpredictable schedules, and leisure activities that you don’t usually do, and your bucket will simply be fuller than at home. To have a successful trip you will want to plan ahead as much as you can and plan for inevitable mishaps along the way so that you can still enjoy your trip.

Plan for downtime

Traveling is tiring. You get out of your regular routine, stay in unfamiliar surroundings, and see people who are new and different. All of this can be stressful on some level, and raise the level of your bucket. One way to address this is to plan an itinerary with intentional breaks. You may want to plan a recovery day for after you arrive at your destination.

If you will be visiting with people one day, make the next day a rest day. Or make part of the day a rest time. Take naps, or at least make sure to lie down. If you are sightseeing and will be walking more than usual, take breaks, and slow down if necessary. You may need to plan ahead for every other day to simply be a day to recuperate from visiting and sightseeing. If you use a wheelchair regularly, or tire easily and know that it would be helpful to have a wheelchair available, call ahead and ask the airline to provide one at the airport. Arrange shuttles in advance. You can even rent or borrow medical equipment in your destination city by checking with local Facebook groups, hospitals, and medical supply providers.

For further info:

• The CDC offers this information to travelers with chronic illnesses.
• This post also offers some helpful perspectives.

Don’t take chances with foods

When you are away from home there is a tendency to want to be adventurous, try new things, and get out of your normal routine. That’s the whole point of getting away! But to make trips and vacations most enjoyable you need to keep one foot on the brake pedal and be prepared to rein in your risk-taking.

One way to do this is to carry your list of allowed or tolerated foods. If you are at a restaurant contemplating what to order pull out your list and try to select something that includes mostly your tolerated foods. Then if you are trying something that you have reacted to before, or deliberately testing out a new food, you can narrow down the possible reactions.

Do you know your typical symptom progression?

One of the keys to understanding the level of your bucket is knowing your symptom progression. It is helpful to keep track of the symptoms you are having and to evaluate whether they are escalating. Symptom escalation means that the level of your bucket is rising.

Knowing your symptom progression in a symptom flare is the key to developing your own rescue plan. In this post, I discuss how to determine your own symptom progression. Once you know what typically happens in your symptom progression you can design a rescue plan to address those symptoms.

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Here is my cheat sheet of generally tolerated foods.

But it’s also important to live your life! When you are on vacation your “bucket” may be less full of some of the at-home triggers because you are generally more relaxed. So try to keep a balance between trying new things (foods, adventures) with sticking to reliably tolerated things.

Bring your tolerated foods on the road

The easiest way to eat on the road is to have ready-to-eat snacks packed in your cooler bag. These options are great for when you are driving and want something to snack on while you go. Some of them require that you pull over and take more time to eat.

Here are some of the easy foods I tolerate on the road. Recipes are linked. These foods are relatively low-histamine, low oxalate, gluten-free, nightshade-free, lectin-free, and somewhat low-Salicylate. Keep in mind that what is low histamine for one person is not necessarily low histamine for someone else. That’s why it is so important to log your foods and reactions and determine your own list of tolerated foods

• 1 Keto Cup
• Low Histamine Fat Bomb
• Trader Joe’s Seaweed Snacks
• Rhythm Kale Chips
• ¼ c. macadamia nuts
• A green salad packed in a silicone container with a fork
• hard-cooked eggs with sea salt
• ½ avocado in the shell scooped out with a spoon, if tolerated
• Bel Gioso baby mozzarella cheese balls
• Organic Valley Stringles
• Catalina Crunch snack mixes
• Low Histamine Protein Shake
• Low Histamine Cheesy Crackers with sliced mozzarella
• Moon Cheese
• ½ c. pistachio nuts
• Sunbutter with 1 ChocZero Chocolate Square
• Frozen entrees in glass containers
• Low Histamine Choc Chip Cookie
• Low Histamine Brownie
• ½ c. frozen D2 whole milk yogurt with homemade Low Histamine Granola
• Low Histamine Graham Crackers
• Coconut Chips
• Trail mix made with seeds, chocolate chips, and coconut chips
• Diced chicken breast with a dip such as Primal Mayo mixed with spices

A lot of the packaged Keto snacks are off-limits to me because of histamine or oxalates. But if you can tolerate them here is a list of some more possibilities:

• Almonds, cashews, pecans, or other nuts
• Almond flour-based baked goods
• Almond meal crackers
• Meat sticks and chicharrones
• Grain-free pretzels
• Whisps
• Flackers
• Legume snacks like these or these

Meal plan

Staying on top of food triggers while traveling can be exhausting. One way to take the stress out of eating is to meal plan at least some of your meals. Have frozen tolerated meals in your cooler ready to go so that you can fall back on a “normal” meal you know won’t raise the level of your bucket. Then you can intersperse planned meals with occasional more spontaneous meals in restaurants.

How to heat food while away from home

Let’s say you are on a road trip and the only nearby options are fast food chain restaurants. If you’ve snacked all day on tolerated foods in the car you will likely want to get out of the car and have a hot meal at some point. Restaurant chain foods are typically not an option for me, because of the preparation methods and cross-contamination So I often stop at parks, rest stops, or campgrounds to eat or cook myself a meal. Here are a couple of possibilities for hot food away from home:

• I have one of these food warmers by Hot Logic. It takes about three hours to heat up an entree from frozen in a pint mason jar, so I pop one in at the start of my drive, plug it in, and by the time I’m ready for a meal break, it is hot and ready to go.
• I love my MSR camp cook stove! I can boil water for tea, cook a box of gluten-free macaroni and cheese in about 15 minutes, or heat water to wash dishes.
• Jetboil makes another excellent camp cook stove, though it is a bit more expensive.
• Solar ovens! I love the solar ovens that I create and sew in my studio that you can purchase here. To use a solar oven, you just put the food inside, point the widow toward the sun, and within an hour or two, you have cooked food. You can even bake things in a solar oven!

Snacks that don’t require heat

Another option for a cold meal is to whip up a shake or smoothie. I have this portable blender that works great as long as I can find an outlet to plug it in. Outlets are frequently available at rest stops, coffee shops, and campgrounds with electric sites, and sometimes you can talk a gas station attendant into letting you plug in for a minute. Here are some options for quick smoothies and shakes:

• 1 c. cold water, 1 squeeze pack of Sunbutter, 1 squeeze pack of MCT oil, and 1 scoop of Perfect Collagen Powder.
• 1 c. of canned coconut milk, ⅓ c. macadamia nuts, 1 scoop of protein powder, and 1 T. cocoa powder.
• 1 c. cold water, 1 T. coconut oil, and 1 scoop of Perfect Collagen Powder.

Basically, you need about a cup of liquid of choice, 1 T. fat, collagen peptide powder and/or protein powder, and some sweetener, if preferred. If you can score ½ c. of ice from a convenience store it is even more refreshing. You get the idea.

Making hotel stays do-able

In this post, I talk about how I camp in my car. But sometimes I have no choice but to stay in a hotel if I am visiting an out-of-town medical provider. So, here are some tips for making that work:

• If you have a choice, ask for a room that is on the second from the top floor. That way if the hotel has had water damage from the roof, you will be a little safer one floor down from the top where the worst damage likely occurred. This is a pretty common issue because hotels usually have flat roofs, which are notorious for having water damage, especially in the northern and mid-western states where we get heavy snowfall. Don’t take a room on the first floor because they are typically noisier, and will have potential issues from water incursion due to flooding. Again, it may sound crazy, but hotels are not usually engineered to keep water out.
• Check the room as soon as you get the key, and notice if there is a smoke odor, the smell of bleach, or any other offensive odor. If it smells musty or smoky go back to the desk and ask for a different room. Trust me, if you have a chronic illness you will not be comfortable in a musty room because it likely has a water problem. Look under the sink in the bathroom (and kitchenette if there is one) for discolored (black or gray) plywood. Look for drips and puddles under sinks and around bathroom fixtures. If the bathroom or kitchenette has mildewed tile or countertop grout, again ask for a different room.  Bleach is never healthy to breathe, so if the hotel uses bleach to treat mildew you still don’t want to stay in that room. If the room smells of strong cleaning agents or bleach, pick a different room. Peek behind the refrigerator if you can, and look for leaking water (if the fridge hasn’t been defrosted in a while or from a broken ice maker.)
• Feel the carpet with your hand to make sure it is not damp. Avoid rooms with ensuite hot tubs because these rooms often have wet carpets, which is a mold issue.
• If there is a pool in the hotel you want to be situated as far away from it as possible, to avoid noise, for the possibility that the carpet is wet from people coming from the pool, and the deleterious health effects of breathing indoor pool chemicals.
• Smell the sheets and towels. If you have multiple chemical sensitivities you can become sick from sleeping on heavily fragranced sheets or strong cleaning supplies. Or better yet, call ahead of your arrival and ask the hotel if they can use fragrance-free linens in your room. Tell them that you react to fragrances in laundry detergents and cleaning supplies. When my family stayed at a resort I was able to request fragrance-free linens and only hydrogen peroxide for cleaning the unit before we arrived. The housekeeping manager was super helpful and willing to make it comfortable for me once I described my multiple chemical sensitivities. There is no point in suffering through things that will make you sick on your vacation! The resort had their linens washed at an industrial offsite facility, but she was willing to re-wash the sheets for our bed without soap before we arrived.
• If possible choose a room with a mini fridge and microwave, which will make food prep easier. But if you don’t have that option you can:
• Bring your own hot plate or Instant Pot with you to cook (carefully!) in the bathroom. You can make a wide variety of dishes with a single burner or Instant Pot. Just remember to also bring a hot pad, spoon, or other cooking utensils, pot or pan (for the hotplate), a few plastic storage containers for leftovers, and anything else you will need for the recipe you are planning.
• Bring your own electric kettle to boil water for tea (hotel coffee makers are notoriously full of mold). I love this kettle!
• Bring your own electric cooler/refrigerator. I love this one! I bought the power adapter for my car, so I can chill it down and pack my cooler the day before I leave on a trip with it plugged in at my house, plug it into my car’s 12V outlet while I travel, and have it running in the hotel during my stay. Food stays cold the whole time and I don’t have to worry about finding ice to keep it cool on the road, or emptying my cooler of meltwater.
• Bring the basics to cook and eat, such as a roll of paper towels, a set of silverware, a cup, bowl, and plate, dishwashing soap – I love CampSuds, a sponge, and a dish towel to dry your clean dishes on (or use hotel hand towels). If you forget silverware or dishes you can always check the hotel breakfast bar, where you can often find plastic silverware and paper plates, bowls, and cups.
• If you have sensitivities to soaps and shampoos then bring your own tolerated versions.
• If you absolutely can’t tolerate industrially washed linens (that’s been me at times) then I bring my own set of sheets, duvets, and towels.
• I always travel with a couple of large black trash bags to bag up whatever I find I can’t tolerate in the hotel room. Even when I request fragrance-free bedding there may still be fragranced throw pillows on the bed, bedspreads, or shams that can irritate sensitivities. Simply bag them up when you arrive and dump them back out on the bed before you check out.
• Bring a few extra kitchen-sized trash bags too, because if you are preparing food there will likely be food scraps, dirty paper plates, or wrappers sitting in your trash between housekeeping visits. That way you can fully bag up any trash with offensive odors and carry it to the dumpster yourself or to the housekeeping closet down the hall where they usually have a trash collection bin.
• Bring a HEPA air purifier. I love my AirDoctor filter, and it is fairly transportable (even by sled!) I also love the Amaircare Roomaid. It is small and quiet, and you can get an optional car adapter to use it in your vehicle while traveling. Even with fragrance-free linens and cleaning products, there will still be potential pollutants coming from the HVAC system, dust, dander, pollen, and possible mold spores. So it just gives me peace of mind to know I have my air filter catching whatever I don’t know about.
• Bring a small fan or white noise machine to block out the noise of neighbors. I use a USB fan to sleep year-round due to hormone fluctuations.
• Shop for fresh local ingredients at food co-ops along your route. I like to pick up fresh salad greens every other day for my salads.
• Bring extras of all of your medications and supplements, and your rescue kit too. You can’t predict when you will need to stay an extra day or two due to weather delays or transportation issues. When you are off your usual routine you are more likely to experience a mast cell flare. Add to that the unknown triggers that you may encounter on your trip, disrupted meal schedules, and emotional triggers (even positive emotions can trigger mast cell flares!) and you are just more likely to experience a symptom flare on a trip. My rescue kit from The Mighty contains my Epi-pens, extra rescue medications in pill pouches for when I’m having a flare, gloves, paper drape towels (for dealing with medications on sketchy surfaces), extra masks, a list of my medications (you never know when you’ll need it!), a couple of antivirals in case I catch Covid-19, a few Covid-19 test kits, and a copy of my rescue plan. The kit I use comes with inserts that I usually take out to make room for everything I need. You can also slip in an ice pack for day trips to keep medications cool.

Traveling with MCAs definitely takes more advanced planning, but it can be totally worth it to get out of your normal routine and experience adventures on the road!

What do you think?

I’d love to hear your thoughts in the comments below!