Masto and food : Hello all, first post... - The UK Mastocytos...

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Masto and food

Mysystemicmasto profile image
6 Replies

Hello all, first post! What are peoples experiences with certain types of food and flares with Mastocytosis. I know it’s individual to each person, but it would be interesting to know what food other people struggle with if any! Thanks in advance!

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Mysystemicmasto profile image
Mysystemicmasto
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6 Replies
Kay-UKMasto profile image
Kay-UKMastoAmbassador

Hi there. Firstly I'm glad to say that since I haven't been going out to eat at all (since lockdown began) I seem to have been more stable in terms of reactions to food - because I have more control over ingredients and I have a diverse selection of things which can set off reactions (though in my case it's usually diarrhoea, feeling sick and flushing rather than anything worse). I have to problems with (in no particular order) mushrooms and other fungi (like truffle and that used in some forms of artificial "meat"), avocado, courgettes, cucumber, melon, ground almonds (but not whole ones), cherries, bananas and there are probably other things (but it's so long since I had to do the list to give to a restaurant...).

Having said that, I still get occasional reactions at home which I just can't pin down to anything in particular but which occur after a meal (which I prepare myself, usually more of less "from scratch").

Incidentally I eat very little meat (apart from a small amount of pork, though never a whole "lump" of the meat, and I can eat pork liver or kidneys) - have never eaten beef or lamb or game and don't like chicken - I'm mostly pescatarian (as so many vegetarian things have hidden fungi in them).

I look forward to hearing about other people's "trigger" foods .

Kay-UKMasto profile image
Kay-UKMastoAmbassador in reply to Kay-UKMasto

Just realised the big thing I forgot - alcohol! I'm fine if it has been cooked (in a sauce for instance) but even a small amount of raw alcohol in food can make me feel terrible.

Mysystemicmasto profile image
Mysystemicmasto in reply to Kay-UKMasto

Thanks so much for replying. Yes alcohol for me is a big one! I have had this condition for some time, but working out trigger foods is something that is proving to be harder than i imagined. Meat is also a trigger for me, but it seems with other foods some days im better at tolerating than others! My biggest issue is nausea, diarrhea and stomach cramps when it comes to food!

MastoMan profile image
MastoMan

I tend to react to spicy food, foods where apple is the main ingredient and I have allergies to sea food (mainly crustaceans but I avoid all), nuts and lupin.

Mysystemicmasto profile image
Mysystemicmasto in reply to MastoMan

Gosh yes spicy foods is a definite no go! Apple, thats a new one on me!

Jess-UKMasto profile image
Jess-UKMastoPartner

I have a long list of foods that I'm much better off not eating. My reactions can range, but often include heart rate going up, flushing pink, getting stupid (I feel like I'm sort of receding from the room and people), achy muscles and eventually cramping and diarrhoea. It's been more than 20 years since I pinned down my main ones and I'm quite careful about what I eat, but the list is quite long. (Mine includes wheat, egg, cow dairy (can have some goat and sheep yogurt and cheese but not too much), chicken, lamb, alcohol, cashews, courgette, eggplant, bananas, mango, pineapple, and some more veg). I feel like most of mine are what I was eating when my intestines were in a really bad state. Once they healed a bit (I attribute that to Nalcrom, though I don't know that for sure) then I stopped losing foods and landed on a stable list.

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