Within two months of my first food reaction, I was clinically malnourished and anaphylactic to all nutrition supplements. Dietitians dropped me and I couldn’t afford private appointments in time to prevent malnutrition. It took me months to find an online community that had actually useful MCAS food advice. All the advice I found on websites were utterly useless and had no regard for severe cases like mine. Thus, I have compiled a list of things that I’ve found via research, word of mouth, and personal experience:
The first rule: do not assume the ingredient list states 100% of the ingredients. If it has more than one ingredient, it almost certainly has preservatives. I can’t think of a single exception to this rule. Furthermore, spices and preservatives are rarely specified in entirety.
The second rule: trust your gut. Gut feelings don’t come from nowhere. It is scientifically proven that they are your brain picking up on subtle clues that something is wrong. If your gut is telling you not to eat something, don’t. If you have difficulty swallowing it for no reason—no disorder that causes difficulty swallowing, no swelling, no anxiety, your body just doesn’t want to swallow—don’t eat it.
The third rule: if it smells or tastes different than it should, don’t eat it. A LOT of us develop the ability to smell/taste things we’re allergic to. Ask people you know who have hay-fever if they can smell pollen, many can. In milder cases, smelling/tasting allergies isn’t a serious sign. For those of us with extremely severe allergies, it frequently warns us that we are anaphylactic to eating or breathing that thing.
The fourth rule: organic does not mean chemical free!! Organic means they’re not using artificial chemicals. They still use natural fertilisers and pesticides, which are frequently just as bad for people with severe allergies. Wash organic produce too, and always grow your own if you can.
The fifth rule (more of an explanation): mast cells fall primarily into two categories, connective tissue and mucosal. Connective tissue mast cells live almost entirely in your skin, with a few in smooth muscle and around your blood vessels. Mucosal mast cells are mostly in your airways and GI tract. This is why you can react to touching something but not to eating it, or vice versa, or both. Interesting side note: the mast cells around your blood vessels help manage vasodilation, and poor vasodilation is what causes POTS.
Do NOT fry your food. This increases the amount of histamine.
DO bake, boil, and steam food. This keeps the amount of histamine the same, and sometimes even lowers it when baking.
Use lower temperatures when cooking.
Glass, ceramic, and stainless steel are preferable materials for crockery and storage containers. Avoid non-stick and plastic Tupperware whenever possible.
Do NOT keep leftovers in the fridge! Flash freeze them all. To be clear, this does not mean freeze the instant you’ve taken it off heat. Make sure it’s cooled enough that it won’t damage the storage container and won’t impact the heat of adjacent items in the freezer such that they could even slightly melt.
Do NOT use cooking oil sprays.
Egg yolks good, egg whites bad.
Unless pasta explicitly states that it is vegan or there are no eggs, assume there are.
Meat:
Avoid beef unless you are butchering it yourself and cooking it immediately. All beef bought in stores is aged, meaning it is drastically higher in histamine.
With meat, poultry is the only very low/no histamine option.
Do NOT get minced meat.
NEVER buy meat labelled as cured, dried, smoked, aged, or anything of the like.
I strongly recommend against buying sausage of any kind because they almost unilaterally include unlisted preservatives, spices, etc.
Cook and eat meat the same day you buy it, and NEVER buy meat close to the expiration date. This isn’t just about food poisoning. Histamine increases extremely quickly on meat, much faster than it rots; even if it is uncontaminated and properly cooked, it can still be dangerously high in histamine.
Dairy:
Generally speaking, non-cow dairy is better.
Ricotta and Mascarpone are very low in histamine and extremely easy to make at home. They are simply boiled milk with a little bit of distilled white vinegar or citric acid, then poured through a strainer.
Mozzarella and un-aged Gouda are also very low in histamine, but tend to be harder on the GI tract.
Every store bought cheese has a preservative, and these are almost always completely left out of the ingredients list. Furthermore, cheese requires an ingredient to change it from milk. I have never seen this ingredient listed. It is usually a type of vinegar or citric acid. Different brands use different types, so if you react to ASDA brand, you might be able to have Tesco brand.
Oils (except sunflower oil) and butter are very low in histamine and a great way to cram in calories. A lot of people warn against butter because of the dairy, but if you don’t have a problem with dairy, then you shouldn’t have a problem with butter.
If you’re really desperate for produce, try different varieties and look up the taxonomy. Potatoes and sweet potatoes are like five classifications apart, basically all they have in common is they’re small, leafy plants. Yellow and white onions have vastly different histamine levels. So if you’re allergic to cucumber, don’t assume you’re allergic to zucchini. Even consider trying different varieties of, for example, blueberries, and different locations.
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