Remember: While at least some dietary changes are necessary for most patients, here is no diet that alone will treat MCAD, and beyond the most common big offenders (See “triggers”), the foods and beverages you will need to avoid will be specific to you at a given time period. In general, “category” and “compound” issues will not be relevant. This is something that characterizes a mast cell disorder: symptoms and triggers changing without warning and inappropriate degranulation to thing X, even though related thing Y is tolerated.

1) I am having allergic reactions to foods my blood panel says I am not allergic to. How is that possible?

These reactions are not allergic reactions. (How do you know? Your blood panel shows you this.) They're MAST CELL REACTIONS, and their not being the same thing as your IgE panel-identified allergens is a hallmark of a mast cell disorder. If your triggers were your allergens, we would say your symptoms were from allergies and NOT from a mast cell disorder. There is not a test for your mast cell triggers.

2) What can I do for gastroparesis? My motility is super slow/I have what look like blockages/I feel SO over-full and can't take magnesium and company/magnesium and company don't work.

Unfortunately, this is a very common symptom, and even when you are not eating trigger foods or otherwise reactive, any slower motility (as might be expected with conditions like Ehler Danlos) can also trigger worsening mast cell reactions coming from the stomach. Assuming you're already on adequate mast cell treatment and avoiding your triggers to the best of your ability (If not, that's a good first step.) and have eliminated the usual culprits for gastroparesis (most notably meats, stringy fiber, and “heavy” or fatty foods,) you might also consider things like pureeing your foods to make them easier to digest, eating very small meals or lightly throughout the day, moving gently after eating, and so on. Some patients also need adjunct treatment with other medications.

3) I have leaky gut! How do I handle that?

Ignoring a lot of other discussions I want to have about this topic, first, what do you suppose is the cause of your leaky gut? Is it the standard American Diet (were you eating a lot of junk food)? Is it drinking a lot of alcohol? Is it untreated diabetes? Is it some kind of infection? Or is it your mast cell disorder? (Hint: a mast cell disorder is a really big flashing red light that says “I'm it!” Especially if it's not these other things or a blog correlating with your mast cell symptoms, this is a very good bet.) Whatever it is, you should treat the cause. Why can't you just start chugging some expensive probiotics that are specially formulated to do all that healing work your body does on its own every 5-7 days? (That's pretty neat, isn't it? Your gut is CONSTANTLY HEALING ITSELF!) Because sure, many of the high histamine bone broth and probiotics and “gut-healing” fermented foods are probably going to cause you a lot of actual mast cell problems...but they're also never going to address the cause, so even if you were a patient who tolerated all of these so-called gut-healers, your gut would be “un-healed” in very short order (about 5-7 days later). So, if you have untreated diabetes, you should treat that. If you have an untreated mast cell disorder, you should treat that. If you're drinking a lot of alcohol, it's convenient that stopping this will almost certainly be necessary both for any symptomatic mast cell disorder you might have and for your leaky gut, and the same goes for the inflammatory junk food.

4) How common is malabsorption/vitamin and mineral deficiencies? Should I get a vitamin cocktail IV to take care of my nutrition, since I'm only eating two foods?

In terms of prevalence, I think it's safe to use the word extremely, among trifecta patients, but also, very among the general population. First, especially with complicated disorders (and genes) like these, it's important not to assume you know which vitamins and minerals are lacking, which are unbalanced, and which you actually have too much of until you have tested these. Consider blood tests for vitamins and possibly tissue testing for minerals (hair) with someone you know is qualified to read these results. (These can be more complicated than you'd think!) Then I recommend working with your medical team if necessary to source the right form of each individual vitamin/mineral you are deficient in, with the right inactive ingredients for you, started, as usual, one at a time and very slowly. Anything labeled as a “cocktail” (something with more than one active ingredient in it) is on the “getting started" avoid list for a reason, and the same goes for almost anything in an IV bag that is not given in an emergency and chosen just as carefully. You may need any number of trials of oral, sublingual, and topical vitamins, perhaps compounded or, once you have exhausted all other avenues, you may even need an IV infusion at some point, with appropriate precautions and hyper-careful sourcing of an individual vitamin, but I can almost guarantee that the answer will never come as one of those random-form-of-multiple-things, methylparaben, alcohol-laden bags of quick practitioner profit.

5) I've been thinking of fasting for a while to give my gut a chance to "rest." When will I know if it's helping?

"Fasting" can refer to eating an early dinner and a late breakfast OR it can refer to longer periods, water fasts, or even as some people use to the term, to an era of "juice fasts" and poor life choices, so sometimes, fasting discussions become confusing. Beyond early dinners/late breakfasts (for some patients. Not all MCAD patients would do well with this, and in fact very likely more of them need to eat as regularly as possible or on a particular schedule since various chemical fluctuations are triggers for their symptoms), all of this, from quick changes to long term deprivation of the foods you tolerate to "resting" your gut for more than perhaps 16 hours or so, is in a general sense ill-advised for a patient with ANY autoimmune, motility, or food tolerance condition, because 1) the gut is fickle. It may lose all or many of the previously tolerated foods when the patient attempts to reintroduce them, especially after the stress of this big change, and 2) the gut will probably want to keep "resting." Remember, you have kind of a lazy gut. It was doing too much resting before. Putting it into something like a stressful coma isn't a great way to motivate it. Whatever that influencer says about cavemen (which, incidentally, is almost always inaccurate historically, too), pre-mortem, your gastrointestinal tract was not designed to go on vacation or, in the case of serious “fasting,” to undergo extreme stress as its entire microbiome (and everything else in the body) are disrupted. And of course, this breed of fasting is also quite likely to be a mast cell trigger for you on its own. There's nothing wrong with putting the foods you'd like to eat in tastier form in a blender for a period of time, or with juicing (reasonably) if you tolerate these sugar spikes, if you need some motility help or if you're particularly reactive, and many patients do need to do things like this sometimes when their gastroparesis or other symptoms are particularly severe, or even all of the time. However, I don't think there are legitimate practitioners of any kind who would recommend anything like an intentional long term fast, a juice cleanse, or a gut "reset" to patients with any of these or related diagnoses.

6) I read something online about the carnivore diet being good for this.

I haven't seen this, so I can't say anything about the source or what it was referring to, but a carnivore diet is 1) extremely difficult to digest properly, 2) extremely inflammatory in practice, and 3) coincidentally, also especially challenging with respect to mast cell triggers. I recommend talking to your medical practitioners. Some mast cell patients successfully eat some meat. Some mast cell patients need some meat. For these patients, sourcing organic meat (chicken and bison seem to be somewhat common, for example), flash frozen (fresh), and eating it very quickly after it's defrosted, as part of a balanced diet, are often important. Many more patients are vegetarians or vegans. Finding the diet that's right for you is key, but I would guess on the whole that this might be among the least likely fad diet to be that, and it has distinct, well-established disadvantages unrelated to mast cell issues if adhered to for a longer period of time (think hearts and nutrients- things you need). Carnivore and some similar diets I've been asked about also seem to rely on the misunderstanding that "cavemen" ate a lot of meat, which, as irrelevant as this is to modern OR medical concerns, is also in my mind a rather strange misrepresentation of the diets of early peoples (which likely consisted of much more from the "gathering" side than from meat from periodically successful hunts.) As a general rule, if a nutrition influencer or product-pusher or even researcher's argument for the health or medical merits of a given diet relies on an unrelated science like anthropology, but they don't appear to be aware of some basics of that science that they're citing as the central reason you should subscribe to their diet, perhaps you should take their medical advice with a grain of salt, as well.

7) How do we desensitize from our food triggers?

You don't technically “desensitize” like you would using any of the usual therapies for allergens and intolerances. (Eating small amounts of your triggers over time is more likely to make you more reactive to them, not less.) But that doesn't mean that, after becoming more stable, you will not get some or all of the foods you “lost” (which at some point became triggers for you) “back.” This process is neither linear nor simple, however, and your triggers instead changing often should not be cause for alarm. (You win some, you lose some. Neither means it's forever.) How can you try things again, once you're more stable? Very slowly and one at a time. Please see the next question.

8) I have some safe foods that I've been stable on for a little while, but it's time to try to get some other things back. I've had such bad experiences with foods or supplements in the past that I'm scared to try anything again. Do you have any advice for how to get past this?

First, medical trauma is serious, and just being able to acknowledge it and know that it might be getting in your way is a huge step towards overcoming it, so a big kudos to you! Trying new things, even without having had these bad experiences before, can be very stressful, especially when you've been limited for some time.

On the foods themselves:

1) Choose single ingredients, one at a time, that you're most likely to do well with first. Don't pick the ingredient that sent you to the hospital or showed up with giant flashing red lights around it on your IgE test (Let that one go with gratitude or whatever you like...but let it go.). For now, aim for often tolerated ingredients that maybe you cut because you weren't quite sure if they were contributing to your symptoms or not, or just something you used to tolerate that you haven't had in a while.

2) Start SLOWLY. This is recommended not only so you're more likely to catch a little reaction and stop it than you are to eat a full heap of mast cell terror and be in over your head. It also increases your chance for success because mast cells aren't very keen on surprises. If you were friends with a mast cell, the worst thing you could do for it is throw it a surprise birthday party. So if you're going to try that organic apple, cut it and smell it, rub it on your skin, lick it, use a fork to take a tiny sample, and so on. Do it over days or weeks. If you need a supplement, med, or something else like this, empty a little of it into a glass of water (take apart the capsule, crush the tablet, stab that sea buckthorn bead like it's a Capulet and squirt it into the glass), sniff, swish it around in your mouth and spit it out, let the next sit in your mouth for a bit, take a small sip... You don't get any points for speed here.

3) Have someone around, and have your rescue meds available to you, not necessarily because you'll need them, but because if you're ever unsure or have a moment of worry, scrambling is never a help. No one available? Maybe you could go hang outside of a coffee shop or restaurant with a patio close to a hospital with a medical alert bracelet or other instructions with you for peace of mind. If your doctor thinks at some point that some foods are best for you to try in the office or very close to a hospital/in the waiting room, bring a friend, watch some funny videos on your phone or tablet, and try to make some fun of it to stay as relaxed as possible.

On the other things you can do:

1) Muscle test (with the help of a friend), douse, or just leave the thing you're trying next out on the counter as you're getting ready to start this process so you can sniff it or hold it in your hand when you go by and visualize it being a good thing, something that's going to help your body rather than hurt it. The more you can think this, the more sources of confirmation you can get that this is going to be a victory for you, the less stressful this trial will be and the less likely that a stress response will throw it for you.

2) Try tapping (EFT) and meditation, and consider distraction so you're not thinking about and expecting symptoms as you go through this process. Maybe you could have a favorite (happy! Leave the dystopian drama or serial killers dropping down from ceilings out for now!) book or TV program to be focused on each day as you work on getting your thing back. It may seem silly, but it can go a long way in helping this go smoothly. (And no, family-members-in-denial, none of this makes the patient's reaction “in their head.”)

3) Get whatever support you need- from friends, from mental healthcare providers who specialize in overcoming medical trauma, from support groups, from useful family members...from whatever the best of your circle is. You should have access to every resource you need to overcome the trauma and anxiety elements of this, and you deserve to have people cheering in your corner, commiserating when things are a little slower than you would like or there are setbacks and celebrating every little victory you have- you've earned them!

9) Why do I tolerate a food in one setting but not in another? (Like I can have some bites of an organic, flash-frozen chicken breast, but then I got out to The Organic Chicken Restaurant and order their plain organic chicken breast and go straight into anaphylaxis.)

There could be a lot of reasons for this, but you have to keep in mind that when you eat out, there could be hundreds of other things introduced to your food that you don't know about from oil mixes (that extra virgin olive oil has had a dalliance with some peanuts or canola), spice mixes (MSG-free doesn't actually always mean MSG-free, or free of anything else, and it's not always because the proprietor is lying. They aren't always told about suppliers' changes.), and any number of handling concerns. Meat, for example, in particular develops exponentially greater potential to cause histamine issues the longer it's not eaten, and there is no way to know how long the particular piece of chicken The Chicken Restaurant served you has been sitting in a refrigerator.

10) Is it true that my relative really has to eat organic all the time? I don't understand how their body could tell the difference and think this is in their head. I read pesticides and hormones and bettlejuice are totally safe and don't actually make any difference at all!

I don't know your relative, of course, but I would say there is an excellent chance they definitely do have to avoid these things and are in very, very good company among other patients with these disorders. Pesticide and various other residues in many cases are absorbed into foods and are extremely common chemical triggers. I'd personally question the validity of this reading material, given what's known about these things so far, but also, try to remember that what's okay for the you or for the general population, something that is totally harmless in the average human body, is most certainly not harmless to a mast cell disorder patient if this is one of their triggers. It would be nice, and I would hazard a guess that almost all mast cell patients would be paragons of health and vitality if their triggers were only “bad” things, but sadly, that's not the case.

11) Fine. But what about foods they just smell or touch? They say what I'm cooking makes them so sick it's dangerous! How could they react to a food if they're not even eating it?!

That's also very normal and expected. What you smell when foods are cooking are food particles. Mast cells are found throughout your family member's skin, sinuses, throat, and lungs. They don't have the option to turn any group of them “off” for a period of time to accommodate your cooking needs.

12) Okay, but is it really possible they could die of a reaction to food just cooking? Isn't that a little melodramatic?

Yes. And no, it isn't.

13) There are very few foods you or my mast cell specialist recommends cutting for everyone, and no categories like dairy, gluten, all histamine...that I keep reading about. Why don't you recommend a comprehensive elimination diet?

For a few reasons:

1) Especially beyond the most common challenges, every patient really is different.

2) A sudden, dramatic change of diet is itself stressful on the body and may well trigger mast cell issues on its own. That's not to say "big," and even sometimes fast changes are not necessary in some cases, but if they're not, there's no reason to put the body through this stress and risk reactions, and this would also work against the patient's attempts to identify food triggers.

3) For the same reason I don't recommend fasting over any significant period: any patient with a food tolerance issue is likely to struggle to get back the foods, and if this category wasn't a trigger of theirs, this struggle or loss is unnecessary.

14) Should I follow the SIGHI histamine lists?

If you have histamine intolerance, absolutely, and that's the best source. If you do not have histamine intolerance, but you instead have a mast cell disorder, then...probably not exactly, and maybe not at all. Every patient is different, and while some things (alcohol, for example, among others listed in “common triggers”) on the high histamine lists are also extremely common mast cell triggers and I often recommend cutting the highest “regular” histamine culprits, as well, at least as you are beginning this process to separate out histamine “bucket” issues from your actual dietary triggers, it's important to remember that histamine intolerance is an entirely different condition. If a low histamine diet or taking DAO before meals completely eliminates your symptoms, this is a good confirmation that histamine intolerance is the order of the day and you are not concurrently suffering from a mast cell disorder.

15) Why don't you say histamine intolerance a mast cell disorder? There's a website!

So I've heard...but because it's not. It doesn't involve mast cells at all. Histamine intolerance is the inability of the body to adequately break down dietary histamine due to an insufficiency of DAO, a digestive enzyme which serves this function. These dietary amines are coming from your food, which is why this digestive enzyme is important. They are not coming from degranulating mast cells anywhere in the body, and mast cells have no part in this process. You may, however, have PROBLEMS with higher histamine foods or beverages, or with too much dietary histamine to varying extents with either MCAS or SM because of an excess of circulating (and perhaps otherwise healthy levels of) histamine is triggering more mast cell activation in the way mediators do in patients with these disorders. In these cases, some SIGHI recommendations (and I strongly recommended sticking to this source) and balancing your histamine “bucket” may be important, but this is not histamine intolerance, DAO will not treat it (unless you also happen to have histamine intolerance), and, remember, there is no diet that alone will treat MCAD.

16) Why don't you talk more about oxalates? Why don't you talk more about salicylates? (Why don't you talk at all about lectins?)

Because there is no reason to believe real intolerances to salicylates or oxalates are even correlated with MCAD. I suspect an extremely disproportionate percentage of patients are at some point in time made to believe they (ironically, often suddenly) struggle with oxalate or salicylate sensitivities, or even with “anti-nutrients,” because these nearly exhaustive lists inevitably include many of their triggers and symptoms of some of these conditions may overlap with those of a mast cell disorder. These are, however, entirely unrelated conditions which have comparatively simple solutions. I meet a lot of patients who are successfully taking extremely high salicylate or oxalate supplements, herbs, and meds, for example, who have been told they are sensitive to these things due to their dietary restrictions. (For example, some patients who have even successfully used aspirin or willow bark, quercetin, and some herbs and teas believe they are salicylate intolerant. On the same token, some mast cell disorder patients find something suggesting they are salicylate intolerant because they can't have alcohol, aspirin, or a number of common mast cell triggers and this issue turns out to be for the more typical reasons rather than due to these compounds.)