Mast Cell Activation Syndrome is a beast of a condition that can impact every part of your life. The good news is there are many things you can do on your own to improve symptoms and reduce flares.
Food stuff is such a sticky wicket for me! I’m anorexic, and if it’s too much trouble to prepare food or stick to a diet of sorts, I just won’t eat. I don’t think I have a lot of food no, although there are a few. The no list gets bigger and smaller depending on bucket fill. Though there are some things like bell peppers always on the no list. That’s more like the fuck no list, I react horribly to them. Feeding me is already difficult, MCAS is NOT helping.
I’m very lucky in that for the most part I don’t react to smells or fragrances. My reactions are almost entirely food related save for some allergens (like pine, the only thing I’m actually allergic to in the testing). I have my NO foods, my “only if the bucket isn’t full foods”, and safe foods. Xolair means I have more wiggle room, but towards the last week or so before I get my injections I have to be very careful.
Stress will set it off as bad as anything so I need to be very mindful of my nervous system. Lots of yoga and meditation. If I’m having a flare, exercise can trigger it so I stick to light weights or yoga or stretching. What a pain in the ass this is.
That’s a really good point about exercise - I often forget how much it can be a trigger (mainly because I’m mostly bedridden so don’t get much exercise).
I’m still waiting for approval to try Xolair and desperately hoping it helps. I’m so careful - I’m on most of the other medications - and I’m still getting worse. My list of foods is SO Small now. I’m always happy when I hear others have success with Xolair - it gives me hope!
Fingers crossed. It has some side effects (I feel like crap for a day after I get the injections - mostly joint pain and fatigue) but it’s been a game changer. It got even better with my adhd under control. I hope you feel better soon and get your approval!
Great post. Now I'm wondering how many foods from other regions are completely different than in North America like your oat milk. I never know what half the ingredients are in the first place.
I think knowing how individual tolerance can vary widely is really helpful too. One of my strongest food triggers is turmeric. I cannot tell you how often people lecture me about curing my MCAS with turmeric. Other MCAS patients will insist that I must try it. I swear that it’s become the new “yoga”.
As for losing food via elimination, my immunologist encourages me to continue to ingest tiny amounts of foods that I react to (but don’t have anaphylaxis to) in an attempt to not complete “lose” the food. I mean tiny amounts. And I usually eat it only every couple of weeks, but for things that I’m getting inadvertently exposed to sometimes (hidden wheat, soy and turmeric - since turmeric is rapidly becoming a standard food colouring in USA).
I also find that being sure that I don’t eat the exact same food for more than 3 days in a row helps protect the foods I can still eat. I try to switch them out. This is only possible because I still have the privilege of enough safe foods to allow this, but as I flex up and down in what I’ve had as safe foods, this has usually helped me maximize my number of foods
Thank you for sharing all your knowledge and advice. Practical advice like this definitely should make the experience of MCAS less stressful. Your willingness to expend precious 🥄🥄 is quite a gift.
I’m on a lot of medications, some compounded, some not. I have multiple long term chronic illnesses, many which we have been treating since early childhood.
For my MCAS Xolair definitely helped me a lot. I have significant itching, redness/flushing, and hives and it made a HUGE difference for that. I have built up to 300 mg every 2 weeks. Those symptoms aren’t gone. But it’s inconvenient not torture.
Honestly the things that helped me the most aren’t traditional MCAS medications. I’m now on hydroxychloroquine and methotrexate (it was a slow process of starting low dose with hydroxychloroquine and building up and then later adding methotrexate in the same long process). It took almost 5 years, but I’m finally adding foods again and my episodes of GI anaphylaxis are much less severe and happen less often.
I spent the past year doing postural restoration therapy with a physical therapist to address my dysautonomia, hyper mobility, and cervical dystonia/spasmodic torticollis. That work has significantly helped me learn to calm my autonomic nervous system (beyond the biofeedback and mindfulness that had learned previously in efforts to help me manage migraine/chronic pain). I believe that this in combination with medications has been very beneficial in my management efforts.
That’s fascinating - thank you for sharing! Are you on cromolyn and ketotifen too? If you don’t mind sharing?
Honestly when I was doing regular yoga my symptoms were probably the best they’ve ever been. I desperately want to get back into it. My posture is awful now and my back is a mess.
I am still actively on Ketotifen. It’s technically not available in USA as an oral medication, so I have it compounded.
I’ve tried oral Cromolyn multiple times and I get blinding headaches by the time I build up to ingesting a dose large enough to give me therapeutic benefits. I also take so many other medications that require special timing requirements that adding Cromolyn meant timing dosing was ridiculous. My day was literally scheduled to the minute and eating and drinking became traumatic.
It was quite surprising to me because a Cromolyn inhaler was the drug of preference to manage my asthma for years starting in the early 1980s. I also used Cromolyn eye drops to manage an “allergic response” I had in my eyes to my contact lenses (yes, I was “allergic” to every contact lens I ever tried to wear for years and years - you would have thought someone would have been noticing a pattern. When I suggested a pattern I was told I was making it up. Oh and that I must not know how to care for my contact lenses and must be wearing them too long).
I also take cetirizine, famotidine, zileuton cr, quercetin,azelastine
Plus LDN and meds for “asthma”/breathing. I have multiple H1s for rescue and epi plus glucagon (I’m on a beta blocker for my dysautonomia and migraines so the epi may not work as well. The one time I got epi it worked just fine, but that was a LONG time ago, so I’m carrying the glucagon too).
I had done “elimination diets” for my various conditions over the years. I’ve voluntarily lived on limited food amounts or varieties for “health” or “weight” purposes so many times that I regularly want to punch health care providers in the face when they blame my illnesses on what I eat.
It’s so interesting that you mention the timing of the cromolyn because that’s where I’m at. My days are literally scheduled to the minute and if something throws that schedule off it can cause a horrible flare.
I couldn’t tolerate Ketotifen and I seem to tolerate Cromolyn well - so I put up with it - but it’s not helping with my already limited diet to have to take such a restrictive and finicky medication.
The doctor who initially Rx oral Cromolyn for me didn’t tell me anything about it, nor did the pharmacist. So I started 4 ampules a day and had no clue about having to space between food/fluids/meds. I was SO sick within a day of starting it. I REALLY wanted it to be a magical solution, but it wasn’t.
My husband actually develops new ways to deliver pharmaceuticals, so he was really helpful in getting me information about Cromolyn and allowing me to make my peace with it not working for me.
I agree that it’s really hard when the drug that is offered as one of the best hopes ends up exacerbating so many of the issues that we are already dealing with.
I really hope that you get to try Xolair and that it can give you some improvement 💜💜💜
These are such helpful tips - and important for showcasing how different we all are!
I’m down to only a handful of safe foods and it’s awful because I can’t rotate them and I know I could lose them at any time. I’m so glad you’re trying to protect the foods you have left.
Is your immunologist MCAS savvy? I actually can’t tolerate turmeric anymore - which is a shame because I also can’t tolerate any NSAIDs and it did really help with pain. People still lecture me to try it too - even though it causes anaphylaxis and the most horrendous heartburn.
I’m so sorry to hear that you’re down to so few foods. As the list gets smaller and smaller, it’s really terrifying.
My immunologist manages my
MCAS and is a MCAS expert. She made a huge difference in my management. Because I am just “different enough”, she has been willing to try some less traditional treatments for me. And we have been pretty aggressive in managing my comorbid conditions as well.
I have a large number of comorbid conditions that have been diagnosed before, during, and after my diagnosis of MCAS. My immunologist’s philosophy is that we should always start by looking at the pathophysiology of each new disease to look for potential links to MCAS. It’s been shocking how many can be linked.
I'm so glad you have that - it can make a huge difference! Are you taking medications? I haven't tried Xolair yet so I'm hoping I can get approved - and cautiously optimistic it'll dial things back for me since nothing else is working.
I had to laugh at “Many MCAS patients react to the smells, smoke and chemicals from cooking more than the actual food.” I can’t be in the house either bacon cooking. 🤣
I’m glad I made you laugh! I hate being around food when it’s cooking - and I live in a super tiny apartment so the smells are inescapable. I think some people just blame the food and don’t realize it’s the chemical reaction that’s impacting them the most.
Food stuff is such a sticky wicket for me! I’m anorexic, and if it’s too much trouble to prepare food or stick to a diet of sorts, I just won’t eat. I don’t think I have a lot of food no, although there are a few. The no list gets bigger and smaller depending on bucket fill. Though there are some things like bell peppers always on the no list. That’s more like the fuck no list, I react horribly to them. Feeding me is already difficult, MCAS is NOT helping.
MCAS would be so difficult with anorexia - because the limitations can become extreme (and fast). I’m so sorry you’re having to deal with that!
Thank you for the mention in this great primer on how you manage food and more!
Thank you for writing such an excellent and comprehensive guide!
I’m very lucky in that for the most part I don’t react to smells or fragrances. My reactions are almost entirely food related save for some allergens (like pine, the only thing I’m actually allergic to in the testing). I have my NO foods, my “only if the bucket isn’t full foods”, and safe foods. Xolair means I have more wiggle room, but towards the last week or so before I get my injections I have to be very careful.
Stress will set it off as bad as anything so I need to be very mindful of my nervous system. Lots of yoga and meditation. If I’m having a flare, exercise can trigger it so I stick to light weights or yoga or stretching. What a pain in the ass this is.
That’s a really good point about exercise - I often forget how much it can be a trigger (mainly because I’m mostly bedridden so don’t get much exercise).
I’m still waiting for approval to try Xolair and desperately hoping it helps. I’m so careful - I’m on most of the other medications - and I’m still getting worse. My list of foods is SO Small now. I’m always happy when I hear others have success with Xolair - it gives me hope!
Fingers crossed. It has some side effects (I feel like crap for a day after I get the injections - mostly joint pain and fatigue) but it’s been a game changer. It got even better with my adhd under control. I hope you feel better soon and get your approval!
Thanks so much!!!
Great post. Now I'm wondering how many foods from other regions are completely different than in North America like your oat milk. I never know what half the ingredients are in the first place.
Such excellent advice, thanks for this!
I think knowing how individual tolerance can vary widely is really helpful too. One of my strongest food triggers is turmeric. I cannot tell you how often people lecture me about curing my MCAS with turmeric. Other MCAS patients will insist that I must try it. I swear that it’s become the new “yoga”.
As for losing food via elimination, my immunologist encourages me to continue to ingest tiny amounts of foods that I react to (but don’t have anaphylaxis to) in an attempt to not complete “lose” the food. I mean tiny amounts. And I usually eat it only every couple of weeks, but for things that I’m getting inadvertently exposed to sometimes (hidden wheat, soy and turmeric - since turmeric is rapidly becoming a standard food colouring in USA).
I also find that being sure that I don’t eat the exact same food for more than 3 days in a row helps protect the foods I can still eat. I try to switch them out. This is only possible because I still have the privilege of enough safe foods to allow this, but as I flex up and down in what I’ve had as safe foods, this has usually helped me maximize my number of foods
Thank you for sharing all your knowledge and advice. Practical advice like this definitely should make the experience of MCAS less stressful. Your willingness to expend precious 🥄🥄 is quite a gift.
I’m on a lot of medications, some compounded, some not. I have multiple long term chronic illnesses, many which we have been treating since early childhood.
For my MCAS Xolair definitely helped me a lot. I have significant itching, redness/flushing, and hives and it made a HUGE difference for that. I have built up to 300 mg every 2 weeks. Those symptoms aren’t gone. But it’s inconvenient not torture.
Honestly the things that helped me the most aren’t traditional MCAS medications. I’m now on hydroxychloroquine and methotrexate (it was a slow process of starting low dose with hydroxychloroquine and building up and then later adding methotrexate in the same long process). It took almost 5 years, but I’m finally adding foods again and my episodes of GI anaphylaxis are much less severe and happen less often.
I spent the past year doing postural restoration therapy with a physical therapist to address my dysautonomia, hyper mobility, and cervical dystonia/spasmodic torticollis. That work has significantly helped me learn to calm my autonomic nervous system (beyond the biofeedback and mindfulness that had learned previously in efforts to help me manage migraine/chronic pain). I believe that this in combination with medications has been very beneficial in my management efforts.
That’s fascinating - thank you for sharing! Are you on cromolyn and ketotifen too? If you don’t mind sharing?
Honestly when I was doing regular yoga my symptoms were probably the best they’ve ever been. I desperately want to get back into it. My posture is awful now and my back is a mess.
I am still actively on Ketotifen. It’s technically not available in USA as an oral medication, so I have it compounded.
I’ve tried oral Cromolyn multiple times and I get blinding headaches by the time I build up to ingesting a dose large enough to give me therapeutic benefits. I also take so many other medications that require special timing requirements that adding Cromolyn meant timing dosing was ridiculous. My day was literally scheduled to the minute and eating and drinking became traumatic.
It was quite surprising to me because a Cromolyn inhaler was the drug of preference to manage my asthma for years starting in the early 1980s. I also used Cromolyn eye drops to manage an “allergic response” I had in my eyes to my contact lenses (yes, I was “allergic” to every contact lens I ever tried to wear for years and years - you would have thought someone would have been noticing a pattern. When I suggested a pattern I was told I was making it up. Oh and that I must not know how to care for my contact lenses and must be wearing them too long).
I also take cetirizine, famotidine, zileuton cr, quercetin,azelastine
Plus LDN and meds for “asthma”/breathing. I have multiple H1s for rescue and epi plus glucagon (I’m on a beta blocker for my dysautonomia and migraines so the epi may not work as well. The one time I got epi it worked just fine, but that was a LONG time ago, so I’m carrying the glucagon too).
I had done “elimination diets” for my various conditions over the years. I’ve voluntarily lived on limited food amounts or varieties for “health” or “weight” purposes so many times that I regularly want to punch health care providers in the face when they blame my illnesses on what I eat.
It’s so interesting that you mention the timing of the cromolyn because that’s where I’m at. My days are literally scheduled to the minute and if something throws that schedule off it can cause a horrible flare.
I couldn’t tolerate Ketotifen and I seem to tolerate Cromolyn well - so I put up with it - but it’s not helping with my already limited diet to have to take such a restrictive and finicky medication.
The doctor who initially Rx oral Cromolyn for me didn’t tell me anything about it, nor did the pharmacist. So I started 4 ampules a day and had no clue about having to space between food/fluids/meds. I was SO sick within a day of starting it. I REALLY wanted it to be a magical solution, but it wasn’t.
My husband actually develops new ways to deliver pharmaceuticals, so he was really helpful in getting me information about Cromolyn and allowing me to make my peace with it not working for me.
I agree that it’s really hard when the drug that is offered as one of the best hopes ends up exacerbating so many of the issues that we are already dealing with.
I really hope that you get to try Xolair and that it can give you some improvement 💜💜💜
These are such helpful tips - and important for showcasing how different we all are!
I’m down to only a handful of safe foods and it’s awful because I can’t rotate them and I know I could lose them at any time. I’m so glad you’re trying to protect the foods you have left.
Is your immunologist MCAS savvy? I actually can’t tolerate turmeric anymore - which is a shame because I also can’t tolerate any NSAIDs and it did really help with pain. People still lecture me to try it too - even though it causes anaphylaxis and the most horrendous heartburn.
I’m so sorry to hear that you’re down to so few foods. As the list gets smaller and smaller, it’s really terrifying.
My immunologist manages my
MCAS and is a MCAS expert. She made a huge difference in my management. Because I am just “different enough”, she has been willing to try some less traditional treatments for me. And we have been pretty aggressive in managing my comorbid conditions as well.
I have a large number of comorbid conditions that have been diagnosed before, during, and after my diagnosis of MCAS. My immunologist’s philosophy is that we should always start by looking at the pathophysiology of each new disease to look for potential links to MCAS. It’s been shocking how many can be linked.
I'm so glad you have that - it can make a huge difference! Are you taking medications? I haven't tried Xolair yet so I'm hoping I can get approved - and cautiously optimistic it'll dial things back for me since nothing else is working.
Awesome explainer!
I had to laugh at “Many MCAS patients react to the smells, smoke and chemicals from cooking more than the actual food.” I can’t be in the house either bacon cooking. 🤣
I’m glad I made you laugh! I hate being around food when it’s cooking - and I live in a super tiny apartment so the smells are inescapable. I think some people just blame the food and don’t realize it’s the chemical reaction that’s impacting them the most.
This has so much helpful info in it, thank you! I appreciate you!
Thank you! I’m glad you found it helpful :)