MCAS elimination diet: tips and tricks?

[Aspen]

Hey folks, here’s a place to post your MCAS safe-food wisdom!

I’m finally starting to get a handle on my MCAS food and skin product sensitivities… it’s blowing my mind how many things I react to, but also how much better I can feel when I stick to safe foods/products. While I’ve heard folks mention their MCAS elimination diets on other threads, I haven’t found a thread devoted to the monumental task so here we go. Please redirect me if I’ve missed anything that already exists.

I’ve been working with a dietician lately and I’ve also found www.mastcell360.com to be a good spot to find info. The website goes into more detail than your average low-histamine food list, helpful for me because I suspect I also have oxalate and lectin issues. Between the dietician and Beth at Mast Cell 360, I’ve finally been able to create a list of about 40 foods that I DON’T REACT TO AT ALL!!! And I have another 30 foods that I plan to try over time. I had no idea how many of my symptoms were food-related because I never felt well enough to tell the difference. Can you tell I’m flabbergasted?

I’ve been severely ill and bedbound since I got sick in 2019. In the last couple of weeks, I’ve actually had a few days where I’ve been able to stick to my safe foods list and gone all day without pain, racing heart, shortness of breath, nausea or light/sound sensitivity. And I had 2 PEM episodes recently that only lasted only 24 hours, much better than the 5-7 day PEM average of my last 6 months.

I have a long way to go and the work of an elimination diet does feel pretty overwhelming. I still have foods I have to eat almost daily that trigger me. It’s hard work to find enough other things to eat especially as I’m dependent on caregivers. And I’m looking into MCAS-safe skin care products too. Looking forward to learning from whatever else gets posted here!

 

[Learner1]

Reducing oxalates will reduce mast cell activation, any candida issues and oxidative stress. Oxalates also bind minerals, creating deficiency of mineral cofactors needed for many biochemical pathways to work. B6 can become deficient too They can also crystallize and lodge in joints and tissues, creating pain.

For help with this, you might look at low oxalate.info and the Trying Low Oxalates FB group which has the most accurate list of low oxalate foods and advice for what else to do.

 

[hb8847]

I’ve finally been able to create a list of about 40 foods that I DON’T REACT TO AT ALL!!!

Congrats. 40 more than me.

My understanding is your reactivity to foods or other triggers will depend person to person. Some people won't have problems with food at all, some only with food, some with smells, sunlight, whatever. In terms of the most problematic MCAS foods, Histamine is most commonly mentioned but other groups can be problematic. Gluten is a big one, grains too for many people. Then there are Oxalates, Salycilates, Nightshades, sugar, alcohol. You name it. Best bet I'd say is to just work through them and figure out what you can handle, which you already seem to be doing. Beyond that, I wouldn't then just settle once you know you can deal with certain foods OK. In my case I had my list of about 5-10 "safe" foods, but over time things continued to worsen, and eventually these became 0. Also my opinion is, just because a food doesn't seem to trigger an immediate reaction, doesn't mean it's not making you worse. It could be triggering the release of Mast Cell chemicals at levels you don't detect, but which can be actively worsening your situation. Try and figure out what's going on whilst your food problems are relatively manageable, it's considerably harder once you can't tolerate anything. Best of luck.

 

[Aspen]

Reducing oxalates will reduce mast cell activation, any candida issues and oxidative stress. Oxalates also bind minerals, creating deficiency of mineral cofactors needed for many biochemical pathways to work. B6 can become deficient too They can also crystallize and lodge in joints and tissues, creating pain.

For help with this, you might look at low oxalate.info and the Trying Low Oxalates FB group which has the most accurate list of low oxalate foods and advice for what else to do.

Thanks, good tips. I’m not on FB but this will help me look for similar resources, I’m sure.

 

[Aspen]

Also my opinion is, just because a food doesn't seem to trigger an immediate reaction, doesn't mean it's not making you worse. It could be triggering the release of Mast Cell chemicals at levels you don't detect, but which can be actively worsening your situation. Try and figure out what's going on whilst your food problems are relatively manageable, it's considerably harder once you can't tolerate anything. Best of luck.

This is what I’m gathering from people’s stories, that it gets harder to turn the momentum around over time. I have a feeling that as my baseline gets calmer over the next few weeks I’ll be able to more reliably pinpoint additional triggers too.

In my case I had my list of about 5-10 "safe" foods, but over time things continued to worsen, and eventually these became 0.

How do you manage eating now?

 

[hb8847]

@Aspen , I don't really, things are pretty difficult. There are some foods I react to "less" than others, but it's still pretty bad, basically I alternate between eating and then fasting for a few days when symptoms get too much. I'm currently just treading water in the hopes one of the MCAS medications works, otherwise I'm fucked. My current situation isn't liveable.

 

[MCASMike]

Over the last couple months, I've had really bad bloating, so I tried some different diets. It seems like I need to eat stuff that's easy to digest and keep meals small, but the actual food items don't seem to make much of a difference. Things like gluten, nuts, and fiber are kept to a minimum.

 

[Aspen]

@Aspen , I don't really, things are pretty difficult. There are some foods I react to "less" than others, but it's still pretty bad, basically I alternate between eating and then fasting for a few days when symptoms get too much. I'm currently just treading water in the hopes one of the MCAS medications works, otherwise I'm fucked. My current situation isn't liveable.

It felt wrong to ‘like‘ this comment… I’m so sorry it’s this rough. Sending you lots of well-wishes for finding the right medication and supports.

 

[Aspen]

Over the last couple months, I've had really bad bloating, so I tried some different diets. It seems like I need to eat stuff that's easy to digest and keep meals small, but the actual food items don't seem to make much of a difference. Things like gluten, nuts, and fiber are kept to a minimum.

I’m glad you’ve found a few tricks at least. I was mostly on liquid foods only for the first year and a bit too, I found it much easier to stomach that. Now I‘m up to one smoothie meal and one solid meal a day.

 

[Aspen]

They can also crystallize and lodge in joints and tissues, creating pain.

Is pain the best way to tell if you have oxalate issues? This is something I’ll be doing more research on. There’s a handful of high-oxalate foods that I can for sure tell are bad for me because of racing heart and headache after I eat them, but I’m not sure yet if it’s actually that or just a general intolerance independent of the oxalates. I’m wondering how much my muscle/bone pain is related to this - it used to be constant but now it comes and goes, but it’s not easy to tell how closely related it is to food.

 

[Learner1]

Is pain the best way to tell if you have oxalate issues? This is something I’ll be doing more research on. There’s a handful of high-oxalate foods that I can for sure tell are bad for me because of racing heart and headache after I eat them, but I’m not sure yet if it’s actually that or just a general intolerance independent of the oxalates. I’m wondering how much my muscle/bone pain is related to this - it used to be constant but now it comes and goes, but it’s not easy to tell how closely related it is to food.

Oxalates are an insidious toxin found in many plant based foods. Besides pain, there are many other problems that oxalates cause.

The best way to know if it's an issue is to do a Great Plains OAT test or a Genova Diagnostics Metabolomix+ test.

Here is some info on oxalates:

http://lowoxalate.info/

 

[hb8847]

It felt wrong to ‘like‘ this comment… I’m so sorry it’s this rough. Sending you lots of well-wishes for finding the right medication and supports.

Thank you <3 all the best for your treatment too

 

[Aspen]

The best way to know if it's an issue is to do a Great Plains OAT test or a Genova Diagnostics Metabolomix+ test.

Here is some info on oxalates:

http://lowoxalate.info/

Thank you! Wow, this site is exactly what I needed.