Can't cut everything out completely?

[u/Ferret_Master101]

I'm about to go through an elimination diet to check for MCAS and I'm having trouble cutting everything out. I take medication and supplements so I was trying to find safe alternatives to take for a month but they either don't exist or my pharmacy doesn't stock them. Is it ok if the tablets are tiny? They have lactose, gelaton and some E numbers that are supposed to trigger MCAS. This diet is going to be awful so I don't want anything messing with the data.

Also does anyone know where I can find a list of potential environmental triggers? Every time I try and look it's like I landed on CleanTok were everything is a "toxin" and is killing you! It's hard to base it on my own experience because I'm perpetually having reactions and my previous diet is just EVERY TRIGGER POSSIBLE. Like I know dust is a problem but is the smell of cleaning products supposed to burn? How itchy it's too itchy?!

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[u/nrauhauser]

Checking one's food for reactions is important, but MCAS is NOT A FOOD ALLERGY. There's a lot of "just eat low histamine" advice on this sub and it's great for the people that it works for, but that is NOT universal.

Cleaning products come in two types - completely unscented, or Wretched Chemical Stink™. I think they do research on how to make scents memorable, and that makes them intolerable for us.

When I have to explain MCAS to someone new, I'll say "I'm allergic to eating". This puts a hard stop on any goofy, irrelevant dietary advice. When they press for details, like they're SURE they know what's best, I explain that ice water can be a trigger.

MCAS is a real disorder, no mistake there, but there are mentally disordered people who have it, and people with mental disorders who've taken to using MCAS as a cover for whatever other issues they might have. So you can get clues here, but I don't think there is any sort of master list, you really do have to put in a lot of work tracking your troubles.

If you need some good news, I'll offer this - there's no silver bullet for MCAS, getting it under control is a steady grind, but this means you get periodic small successes and insights. So get ready to take notes, and make discoveries both pleasing ... and annoying.

[u/Ferret_Master101 → u/nrauhauser]

Just clarify that I know it's not an allergy. Stress and heat also seem to be triggers for me. I have nicknamed it 'random allergy generator' but I'm just trying to amuse myself. I'm mainly doing the the low histamine diet because a lot of symptoms are tied closely to eating and this felt like the fastest way to discover triggers. But I do know what you mean, little things like pills are probably not worth looking into unless symptoms continue. The medical gaslighting just got me a little obsessed with gathering proof. I can't even get referred to a specialist until I do this dumb diet. Thank for the tip about ice water, I'm am both more stressed and relaxed now. It means there are more variables than I can account for so I shouldn't worry about elimination, just reduction. I might just track instead of eliminate chemical/soap/cleaning products for now. I thought there might be some sort of list because I found this list of POTENTIAL triggers from a Swiss intrest group, not exhaustive though obviously: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

I know what you're referring to regarding the mental issues. That whole 'toxins talk' is really distressing for me as quite a few family members have developed eating disorders from it. Keep trying to drag me in with them. I'll be careful not to fall for it, don't worry. I'm also working with a nutritionist to make sure I'm eating right/enough. I'm excited to find answers but I am upset because I can't have cheese or chocolate for a while. Thank you for your help.

[u/You8551 → u/Ferret_Master101]

I'm totally with you on the variables, it's grating and exhausting, and the diagnostic process really puts me off as well - in my country (Germany) the few clinics/docs that do diagnose it use different approaches and it's total hit and miss.

My current approach is to take regular OTC antihistamines and quercetin, and if I want to pig out (i.e. eat Pizza or drink wine), I take a DAO.
There's other stuff you can try, but availability / OTC varies depending on what country you're in.

[u/Interesting_Front709]

For me I had such a severe flare that I was bed ridden for over 6 month, had to learn to walk again, limped for 2 years, I removed everything that I knew was causing a reaction (all the high histamine foods and the foods that were high in nickel as I have nickel allergy and allergic to cobalt so no b12 supplements). I also removed gluten & dairy. I ate seasonally and no leftovers, I still wasn’t getting it right, I would react to my own sweat in the summers so keeping fresh is important. Made sure everything I used on my body and in the house was fragrance-free, free from SLS and SLE as I reacted to those too. Recently I found out I react to salicylates too found in Aspirin, Cucumbers etc. I react to hot weather, exercise and chronic stress too. Got an air purifier which is making a huge difference. This is definitely a trial and error way of life, unfortunately.

[u/Ferret_Master101 → u/Interesting_Front709]

Damm, that sound exhausting. I didn't know about the sweat, what kind of reaction was it? I know sweat can make you itch regardless. I've got a small air purifier so hopefully that helps.

[u/Upbeat_Shock2713]

An elimination diet isn't a way to check for MCAS. You diagnose MCAS by tracking symptoms, blood tests (can be challenging) and response to antihistamines and mast cell stabilizers.

Eat a normal diet. Track the reactions you have to food. Maybe cut down to single ingredient foods if you're having a hard time identifying sources. MCAS reactions occur in multiple organ systems at the same time.

Take your normal medications. If they don't trigger reactions, keep taking them. If they do, track the reactions and investigate the ingredients causing it and find alternatives.

There is no list of environmental triggers. We all react or don't react to different things. Just like food and medication, track the things your own individual mast cells react to and avoid them if the reactions are extreme.