Explaining Histamine Intolerance & Mast Cell Activation (How Not to Sound Nuts)
This might seem like a minor issue: not sounding crazy to people when explaining reasons for the diet. But in my world, before I started the blogging, and having a following for people to quantify/qualify whether I’m losing my marbles or not, the act of explaining the histamine intolerance diet to friends, family, and the strangers in whose hands my fate lay in (waiters, hotel owners, doctors), was fraught with stress and unhappiness.
I remember explaining my diet to a mast cell doctor I consulted with.
He looked at me like I had two heads and told me that if my symptoms were controlled through diet, then obviously there was nothing wrong with me.
I spent a good twenty minutes explaining the why’s and how’s, only to be completely brushed off.
I furiously strode out of his office and promptly stumbled right into a display case of medical leaflets. The one that caught my eye?
Diet for urticaria (hives).
Yup, you guessed it, the diet was a really unhealthy version of how I feed myself, what I call the SLHD (standard low histamine diet).
Turning around to confront him, I heard lots of justification as to why hives were not linked to mast cells (ex-queeze me?), so I just continued my storm out of the office.
I decided then and there not to waste my breath explaining myself to people who weren’t ready to listen to me.
That said, I live in the real world and sometimes it’s easier to blend in than call unwanted attention to myself.
ASSESS YOUR MOTIVES
It’s really important to ask yourself what response you’re looking to generate. And be honest, otherwise there’s no point.
Looking to unload our pain?
Needing some sympathy?
Sharing why we’re not partaking in the food?
Excited to tell them about this amazing new thing we’ve found?
Wanting to share how life has changed, for the better or worse, since embarking on this journey?
Knowing what you’d like to get out of the conversation will help you assess the best people to share with and how receptive, or dismissive, they might be.
To a waiter
Hello, I’m having lunch/dinner here with some friends. I have this stomach thing so my doctor has advised me to eat the absolute freshest I possibly can for a while. I saw X on the menu when I checked online, was it made from scratch today? Is there something else you can recommend that might be better? Failing that, would you be so kind as to just see if it’s possible for me to have some plain veggies like XXX, just in a bit of olive oil, and a plain grilled X (whatever protein)?
This is more likely to generate a patient and helpful response than: I’m really sick and I don’t want to eat here but I’ve come anyway. I want to order X dish but I need to have it without X, and X, and X, and please make sure that X, and X.
Much easier to just make your own dish up from a few things you see on the menu. I often order a few side dishes and ask them to put it all one one plate.
To a doctor
I’ve been doing research and suspect I may have mast cell activation (few doctors will take histamine intolerance seriously) because I have X symptoms. I have ruled most other things out. I don’t expect you to know about this disorder, because not many doctors do, but according to Dr. Lawrence Afrin, one in six Americans is believed to have a mast cell disorder. I do not think I have mastocytosis, I know that is very rare, but mast cell activation is not as uncommon as some think. I would recommend looking at this research by NIH funded mast cell researcher Dr. Theoharides at Tufts for more on the tests that are ordered.
I don’t suggest talking about diet at this point and trying to educate them or sharing that you have no intention of taking medication. It will only alienate them.
To an open MINDED friend
Hey, so I was just diagnosed with/truly believe I’ve found the answer to what’s going on with me. I have too much histamine in my body. That means I have allergy-like reactions to most foods! It means that I’ll have to avoid those foods for a while, till the symptoms die down, and then I can start adding them back, slowly.
I know I may have said I’ve found the answer before, but histamine and mast cells are linked to pretty much most inflammatory conditions, so they mimic them, and cause dozens of symptoms.
There’s some great research by a doctor who’s funded by the National Institutes of Health. He’s at Tufts in Boston.
To a closed off friend or family member
It’s a condition that’s medically recognised by the NIH. It’s like really bad allergies. It’s so difficult to diagnose because it’s not main stream yet. But it will be. You know how diabetics have to eat a low sugar diet? People with this type of condition can benefit from eating a low histamine diet. I’m trying it out and hoping it’ll help.
To an open family member
Thank you for loving me and being understanding while I explore this latest thing. I’m hoping it’ll help, I think it takes time…it’s like allergies, but constant, and it’s hard to work out what triggers it.
HOW TO DEAL WITH SPOTTING SOMEONE’S HISTAMINE SYMPTOMS
I used to immediately jump in and explain why X symptom was going on.
Then I learned.
Nowadays I’ll just explain the symptoms I had and wait to see what they say.
Hope this helps!
It sucks that we have to figure out how to communicate this to people, but it can make life easier.