1) Some of these triggers seem almost unbelievable. My friend or family member with a mast cell disorder told me that they were severely reactive to something like just a mosquito bite, their own sweat, the weather, a really exciting announcement or a stressful situation, their partner's semen, or sexual intercourse. Could that really be true?

Yes. These are not at all surprising.

2) Can't I just take enough medications to live how I want to and be around/eat/drink my triggers? You say these drugs work...

Unfortunately, over the long run, no medication is going to be effective if a patient is constantly being bombarded with a major trigger of theirs. This is why alcohol is such a challenge for so many.

3) I know I’m reactive to pizza (or something else). I just like to eat this sometimes. Or I just keep slipping. What can I take before I do that?

This isn’t like eating a donut when you’re on weight watchers. This is perhaps the most notable short-term difference between an allergen and a mast cell trigger for someone with mast cell dysfunction— allergy symptoms stop as soon as exposure does (those nuts are down the toilet or you’re away from the scent)...but if the culprit’s a mast cell trigger, it's likely to keep causing you problems, making those mast cells even more dysfunctional, days, weeks, months, and in some cases years later. So unless that double cheesy MSG pie is the sword you want to fall on, I recommend stepping away from the pizza oven.

4) Is it possible alcohol isn't one of my triggers and I can keep drinking it sometimes? I'm having a really hard time giving this up.

Unfortunately, you're in good company, and I'm very sorry. It's certainly a difficult thing for many patients to stop for various reasons. I don't like using words like “no one” and “everyone,” especially with respect to these very complex disorders, but I'd say that I haven't yet met or seen evidence of a symptomatic mast cell disorder patient who was not at the very least worsened by consuming alcoholic beverages (and see the question above).

As a side note, it's very good that you're thinking about it and facing whatever difficulty giving it up might present head-on. You'd be surprised by the number of patients who will say they don't drink and who treatment just “doesn't help” but who stabilize in a hospital or other setting on these same drugs that “don't work” for them otherwise only when they're unable to access alcohol.

5) My diet's changing, or I'm taking some stuff to kill some stuff. How do I know if I'm having a detox reaction to something new, like an antibiotic or food, or whether it's a mast cell trigger?

“Detox” has become a buzzword that tends to be incorrectly invoked when we're really talking about one of any number of very different things. An actual detox response, a herxheimer reaction, happens when the body's pathways of detoxification (liver, kidneys...) are overwhelmed and become backed up. Waste products from bacteria, viruses, or fungi and their survival Hail Mary's can, over time, tax the body's ability to clear these toxins and lead to feeling sluggish or fluish as the body attempts to “catch up.”

A herxheimer reaction:

1. comes from consistent use of a product that that kills bacteria, viruses, or fungi or helps the body to target these infections, like LDN. (What people are referring to when they say their diet caused a “detox” reaction is usually that they suddenly started eating fiber, or in the case of juices, suddenly started getting a bunch of sugar with no fiber at all. Both will cause significant GI disruption that has nothing at all to do with detoxification. Likewise, what many people notice in the days after starting various "cleanses" (parasites, mold, "toxins") are actually very typical side effects of the herbs.)

2. always takes time. These pathways do not get backed up overnight.
   

3. feels like a gradual wearing-down (you may feel run-down, possibly even fluish, or, in the case of perhaps the majority of die-offs, you won't notice anything at all).

So if it happened within days (or, more often, a couple weeks or more) of starting the new thing, or if it started with significant symptoms, you may be suffering from an allergy, a virus, an infection, a mast cell trigger, or another totally unrelated issue, but you are assuredly not suffering from a detox reaction.

6) What do people mean when they talk about their buckets getting full or running out of spoons?

Think of your mast cells' tolerance as a bucket. Treatment aims to poke holes in the bucket, while the various triggers you encounter fill the bucket. You may not need to go to the hospital when you encounter some smaller triggers, for example, because your treatment is working and your bucket is mostly empty, but then another day, when your bucket is full, even your “safe” foods yesterday or someone dropping something heavy behind you, something that happens regularly without any consequences, may send you into a dangerous reaction.

You might think of spoons as things you could use to drain the general mast cell (or whatever other diseases use buckets) bucket if the bucket were more like a soup bowl. (I'm sorry. Metaphors aren't my forte.) Maybe you wake up with 5 spoons one day. You use one to take a shower, one to eat your breakfast, and one because your neighbor is doing laundry, even though you can't smell it. You have some minor stress that takes another spoon. Now, some other trigger that might not have been a problem on any other day like, say, some exercise, might take your last spoon, and your soup bowl might overflow. (I guess a soup bowl overflowing doesn't sound very threatening. Maybe think of it as very, very hot soup that will burn you.) On another day, a single bigger trigger of yours might take all of your spoons, and on another, treatment may have punched a big enough hole in your bowl and you have 20 spoons and the bowl doesn't even get a chance to get halfway full.

Buckets and spoons explain why your friend with a mast cell disorder might be okay to come into your house when their treatment is going smoothly and they haven't encountered any other triggers one day, but then some other factors they couldn't have foreseen force them to cancel plans at the last minute the next day because suddenly, they wouldn't tolerate this. Something that was previously tolerated might be the final straw (of soup) that sends them to the hospital. When their bucket is full, suddenly, their safe foods may no longer be safe, the lotion you were wearing is cause for immediate anaphylaxis, and the stress you're causing them is extra bad. Triggers block drainage outlets, which is why both treatment (greater drainage) and trigger avoidance are important.

7) When I know something's a trigger, but it's not a life-threatening one, should I intentionally keep using/eating it just a little so I don't "lose" it, or maybe my body will get used to it?

If it were an allergen and not a mast cell trigger and you didn't have a mast cell disorder and were doing this under the supervision of a competent allergist with any variety of well-established therapies, yes. With a mast cell disorder, no.

8) How long will it take for me to react to something? Is it always right away?

Unfortunately not. Depending on any number of factors, it could be immediately, a day, many days, even a week or more, and of course you may also need to track "bucket" problems. This is why I recommend a trigger-tracking journal.

9) I'm just having so much trouble with this new diagnosis. When you all talk about how I need to avoid my triggers, I'm trying, but I can't just give up my life. I'm young, and I need to LIVE. I need to go to the store, do my laundry, and go out with friends to bars sometimes, and I don't know what I'm supposed to do because I just keep getting worse.

How you choose to live with any diagnosis is and I believe should be entirely up to you, so long as you have the have the information to understand the choices you're making. Right now, I'm sure the changes your doctors are recommending are all pretty overwhelming, and you're probably having a hard time imagining your life with them. I recommend reaching out to your friends, family, support groups, and mental healthcare providers to help you through this time. You'd be surprised how many solutions you might find and how much easier it is to deal with an out-of-the-blue diagnosis when you have the right resources.

For example, on the stores...Do you have grocery delivery? Pickup? Amazon? Vitacost? If you have big triggers in stores, some good news about the times is that in many places in the world, you no longer need to go into these kinds of places ever, even if you're on your own and have no help available to you. Or maybe for some places, you might have a good mask that works well enough for you. On the laundry, sure, getting rid of the Tide and the Downey might be a bummer, but you can probably find a detergent or laundry system that you tolerate if you do a little digging and ask for some suggestions from others. Also, that safer option is a lot less likely to be full of neurotoxins and cause you a lot of other serious health issues down the line. And on the friends, have you tried just not drinking the alcohol while you're at a bar? Or if you're reactive to it in the air, have you checked out any outdoor bars? Or maybe you can enjoy some quality time with your friends that's not at a bar. You're not selfish for not wanting your life to change.

You didn't ask for this diagnosis, and there are likely some changes you will need to grieve in your life. I'm not saying you should embrace “toxic” positivity. But just like with any diagnosis or with any life change, even the ones you wanted, like growing up, I recommend you don't just start indiscriminately grieving everything you think might be different. Some things may seem like obstacles now that aren't, that aren't as big as they seem, or that might even introduce you to a better way of doing things.