Can Mast Cell Activation Syndrome Go Away? The Most Common Roadblocks We See in the Clinic and What HelpsĀ
Today, we are going to discuss a question we get asked often.
Can Mast Cell Activation Syndrome go away?
If you live with this condition and have been learning about it for a while, you know the answer isn’t always straightforward. But based on what we see, it is genuinely hopeful.
About 95% of the people we work with in the Mast Cell 360 Clinic experience significant improvements and healing.
First, we need to define healing. Because healing means different things to different people.
Mast Cell Activation Syndrome (MCAS) does sometimes go away entirely (remission). We see it happen more often in children, but it sometimes happens for adults too. And it can depend on many different factors. But even when MCAS doesnāt go into complete remission, there can be dramatic improvements that last a lifetime!
Healing with MCAS looks like:
- Needing far fewer supplements and daily medications, or even none at all
- Being able to eat a much wider variety of foods or having no food restrictions at all
- Having far fewer reactions and sensitivities
- Only needing occasional support around specific triggers rather than constant daily management
- Feeling like yourself again
That’s a very different life than where most people start.
And the key factor we see, repeatedly, is addressing root causes rather than just managing symptoms.
When you remove the reasons behind why your mast cells are overreacting in the first place, you have less to manage. And your body has room to heal.
What keeps people from getting there? Itās not usually a lack of effort.
In this post, we’re walking through some of the most common roadblocks we see in the clinic. And just as importantly, what actually helps.
Here’s what we’ll cover:
- The most common roadblocks we see with our clients
- Dietary spirals
- Hidden triggers in supplements and medications
- Too much, too fast ā how going slow actually makes more progress
- Environmental triggers
- Detoxing out of order
- Where to consider starting
These are challenges where we often see people stalled or stuck, sometimes for years. And knowing about them might help you make progress.
Letās get started!
Itās important you know that this blog post is for educational and informational purposes. Itās not meant to treat any health condition or to be prescriptive for anyone.⯠If you have any medical condition, it is critical you work under the care and guidance of a licensed medical healthcare provider.
One Story We Hear All the Time
Sarah started feeling āoffā after a virus.
She struggled with symptoms that didn’t seem to connect:
- Flushing
- Urticaria (hives)
- Headaches
- Brain fog
- Nausea / vomiting
- Abdominal pain
- Nasal congestion
- Shortness of breath
- Chest tightness
- Low blood pressure
She eventually read about MCAS, and that helped connect the dots. But there was still a lot of confusion and information to sort through.
Because her symptoms often increased after eating, she started removing foods until she was down to just six.
She was also taking about a dozen supplements she had started all at once, hoping something would help.
She added methylated B vitamins for energy and detox.
And she was reacting to the over-the-counter H1 antihistamines she tried, which made her wonder if she even had Mast Cell Activation Syndrome or Histamine Intolerance.
While she did manage to get a few symptoms under control, overall, she was feeling worse.
It’s a story we hear often. When Sarah came to us, she had been trying to figure things out on her own for a couple of years. Once we helped her untangle those layers, one at a time, things started to shift.
Sarah isn’t an unusual client here at Mast Cell 360. In our clinic, highly sensitive people are not the exception. You are the norm.
Work 1:1 with us online: Click here to visit our clinic page
We see a lot of the same things keeping people stuck. And before we dive in, remember that you don’t have to tackle everything at once. Healing is a process. Just pick one thing and start there.
Letās look at the first roadblock we see.
The 5 Most Common MCAS Healing Roadblocks
We know many people are trying hard to heal. Here are some of the most common places we see people get stuck and what might help.
Roadblock 1: Dietary Restriction Spirals
Before you change your diet on your own, please make sureĀ youāreĀ working with a healthcare practitioner who can help you with this. Never limit foodsĀ unnecessarily, andĀ always have a licensed medical provider whoĀ is supervisingĀ your case.Ā Ā
Struggling with very limited diets is one of the most common things we see. Like Sarah,Ā many people know they are reacting to foods orĀ learnĀ aboutĀ food intolerancesĀ (like histamine, FODMAPS, or oxalates) and startĀ takingĀ things out.Ā Ā
They cut more and more foods, hoping symptoms will calm down.
And eventually they’re down to just a few foods (or even one). Their nutritional gaps are deepening, and the reactivity is getting worse, not better.
Thereās a lot of conflicting information online.
And part of what makes it so hard to sort out is that people often have multiple intolerances. Or may not know why they can eat something one day, but not the next.
What Helps with Elimination Diets with MCAS
Here is whatt we see in the clinic:
- Itās not really about the food. Itās about healing the reasons you are reacting to the foods. Diets are short-term supports. The goal is ALWAYS to keep as many foods as possible and expand that. Things like a low histamine diet are not meant to be a long-term solution.
- Swap instead of drop whenever you can. For example, replacing a high-histamine food with a low-histamine option (using arugula instead of spinach, for example) is far more sustainable than just removing them all.
- Check out the Low Histamine Food List for ideas
- Histamine acts like a bucket. Things you can control (food) and things you canāt control (pollen, weather, illness, hormones) can add to that bucket. This is part of the reason you might be able to eat higher histamine food one day but not the next.
- If you’re not sure where to start with diet, histamine is a reasonable first step. Try reducing high-histamine foods for 4 to 6 weeks and see if you notice improvements.
- Freeze leftovers immediately
- Buy frozen, unaged meats. Histamine builds as food sits, and meat is one of the biggest culprits.
- If you notice small improvements, but not as much as you hoped, you are still on the right track! You just need to add other supports and consider other triggers.
- If oxalates are a concern, reduce no more than 5ā10% per week. DO NOT stop oxalates cold turkey. An oxalate dump can cause significant issues.
- Focus on easy-to-digest foods. Soups, pressure-cooked proteins, soft foods, and blended meals can be easier to digest and require less energy from your body.
- Balance blood sugar. Blood sugar swings can activate mast cells and increase histamine. Smaller, regular, balanced meals with fiber, protein, fat, and complex carbs can help.
- Get light in your eyes first thing in the morning. This doesnāt sound like a food issue, but it is. Morning light exposure (ideally within 30 minutes of waking) triggers a cortisol response that sets your circadian rhythm for the day. That rhythm directly influences when digestive enzymes are produced, when stomach acid peaks, and when gut motility is most active.
- When reintroducing foods, start with one bite, wait three days. Mast cell reactions can be delayed, so give yourself time. If you donāt react to one bite, try two the next time. Work up slowly and keep the amount that you donāt react to in your diet.
Related Post: Understanding Food Intolerances with MCAS
Let’s look at some common places we see triggers hiding next.
Roadblock 2: Hidden Triggers in Supplements and Medications
Medications can be meaningful support for symptom management and healing. Mast cell stabilizers like cromolyn sodium or ketotifen are often useful. And the list of supplements that support mast cells is long.
But fillers, dyes, and preservatives are common hidden triggers in both medications and supplements.
One of the most common things people reach for with MCAS are over the counter antihistamines:
- Loratadine (Claritin)
- Cetirizine (Zyrtec)
- Fexofenadine (Allegra)
- Famotidine (Pepcid)
But even many of these contain things that are known mast cell triggers like dyes, preservatives, titanium dioxide or silicone dioxide.
Certain medicines or supplement forms also trigger mast cells. Such as:
- Niacin is a histamine liberator. It causes mast cells to release histamine, which is why people experience flushing when they take it.
- NSAIDS (non-steroidal anti-inflammatory drugs) can trigger mast cells.
- Citrates, like magnesium citrate, can also tip the histamine bucket for many people.
- Anything that pushes methylation or detox pathways (methylated B12, methyl folate, glutathione) can backfire if your system isn’t stable enough yet.
What someone does or does not tolerate is very individual. So, the key is really listening to YOUR body.
What Helps with Hidden Triggers in Supplements and Medications
These are some of the most helpful things you can consider:
- Introduce one new thing at a time. If you react and you’ve started three things at once, you’re back to square one. One thing means you actually know what is helping or not.
- Start small. When you are trying something new for the first time, use just a drop or sprinkle and wait 3 days to see how you do with it. Small starts mean smaller reactions when they do happen, and faster recovery.
- Read the full ingredient list, not just the “active” section. While anyone can react to anything with MCAS, there are a few things that are known mast cell or histamine triggers.
- To read more about ingredients to watch for read our post: The Best Antihistamines for Histamine Intolerance and MCAS
- Compare ingredients. If you keep reacting to things, look at what ingredients show up repeatedly across your supplements or medications to help narrow down what you react to.
- Consider a compounding pharmacy for medications, if needed. They can work with you to find fillers that you tolerate better.
Check out our low-cost Substack Subscriptions with this related post and printable list: Practitioner Tip: Are Fillers and Other Ingredients Sabotaging your Stabilization?
Roadblock 3: Too Much, Too Fast
Practitioners often donāt understand MCAS so they go too fast. And people just want to feel better, which is completely understandable.
The problem with MCAS is that, like guards at a castle under siege, mast cells are on high alert. So, if you start something at a full dose, or even a quarter of a normal dose, it can sometimes be too much. Itās easier to sneak things in if they are small.
Some people need to start with a sprinkle or a single drop in a glass of water and just one sip of that. Then build up very slowly.
It will vary from person to person, and support to support how low and slow you need to go.
But if you are trying to add something new and constantly reacting, slowing things down to what your body tolerates may help. Or it may be time to move on for now.
We also see people put on protocols by their practitioners that just werenāt designed for sensitive people. They go straight to detox or drainage and assume a baseline of tolerance and capacity that many people with Mast Cell Activation Syndrome simply don’t have yet.
This is why stabilization is so important as a first step. And approaching things in a more mast-cell friendly way.
What helps: Slowing Things Down
Here are a few tips we give clients:
- Change one thing at a time. It sounds slower, but it’s how you actually move forward.
- Don’t introduce new things during a flare. Wait for a more stable period.
- Start lower than you think you need to and go up slowly. Itās okay to stay at whatever amount you tolerate best.
- If you haven’t reacted to a sprinkle, that’s good news, not a sign it isn’t working. It means you haven’t yet hit a therapeutic amount, and you can slowly work up from there.
- Keep a simple changes journal ā date, what changed, and what you noticed three days later. Not to fixate on what’s wrong, but to have a few notes to refer to.
Related Post: The Mast Cell 360Ā® Method: Healing MCAS in the Right Order for Sensitive Bodies
Keep reading to learn more about removing triggers.
Roadblock 4: Environmental Triggers You Haven’t Found Yet
Diet and supplements get most of the attention, but your environment is something you live and breathe in every single day.
Environmental stressors might be:
- Mold or mycotoxins
- Chemicals in cleaning or body and skincare products
- Chemicals and pesticides in foods
- EMFs (electromagnetic fields)
Think of this piece like a phone running too many apps in the background. You might not even notice it happening. Nothing looks like an obvious issue.
But the battery drains faster than it should, and eventually the whole system starts lagging.
Your body works the same way. When your environment is constantly feeding your mast cells low-grade signals to respond to or toxins (mold, chemicals, EMFs) you have to clear out, that all requires energy and resources.
It creates a background burden that quietly eats through your capacity. Even when you’re doing everything else right
The most commonly missed and biggest trigger is mold. It can be the single thing underlying evertyhing else and keeping you sick. It can be from current or past exposures. And home tests often miss it entirely.
Related Post: Mold Toxicity Symptoms with MCAS
Fridge water filters are another exposure most people don’t think about. The lines stay constantly moist, which is an ideal environment for mold.
Unfiltered tap or well water can also be filled with other contaminants.
Chemicals in cleaning products and personal care (especially for those with salicylate sensitivity), and EMF exposure are also worth considering.
Pick just one area to investigate. You don’t have to overhaul everything at once.
Tips to Start Cleaning Up Your Environment
Here are some simple places to start, remember, just pick one:
- As products run out, replace them with cleaner options ā a fragrance-free, phthalate-free shampoo, baking soda and vinegar instead of the chemical cleaners, and so on.
- Related Post: Safe Skincare for Those With Mast Cell Activation Syndrome
- Related Post: Non Toxic Cleaning Products
- Clean air and clean water. A good air purifier for the room you spend the most time in and a quality water filter are two of the highest-leverage changes you can make.
- Consider organic foods. If you can’t buy all organic, just use the EWG’s ‘Dirty Dozen’ list and focus on those.
- Test for mold. Look into an ERMI (Environmental Relative Moldiness Index) rather than relying only on air testing. An ERMI is a DNA dust test you can do yourself: Home Mold Testing as Part of Your MCAS Mold Detox Plan
Related Post (for Substack Subscribers): Practitioner Tip: Environmental Triggers to Consider with MCAS
Let’s look a little closer at gentle detox next.
Roadblock 5: Detoxing Out of Order
The word “detox” gets thrown around a lot. But here’s a helpful way to think about it.
Detox is a complex, multi-step process your body uses to remove things that need to be removed:
- Metabolic waste products
- Hormones
- Pesticides and chemicals
- Heavy metals
- Mold toxins
- And more
It happens all day, every day. But your capacity to do it well varies depending on resources and how much your system is already dealing with.
When you actively focus on detox, you are essentially asking that system to work a lot harder and a lot faster.
For someone with MCAS, that can be a problem. Mast cells need to be stable, pathways need support, and nutrient deficits need to be addressed first.
Think of detox like a trash collection system. Your blood delivers waste to the liver. That’s the trash can.
Phase 1 burns the trash. Just like any burn, it produces āash and sparksā. The liver’s built-in antioxidants neutralize those sparks before they can cause damage. But you’re still left with toxic ash that needs to be removed.
Phase 2 is when the liver packages up that ash so the body can carry it out. In this phase, whatās left is attached to compounds that make it water-soluble, so it can leave through the intestines or kidneys. Several pathways handle this job, including sulfation, methylation, glucuronidation, and glutathione conjugation. All of which need to be working reasonably well for the trash to actually make it out.
Phase 3 is elimination. You have to actually move it out through your bowels or kidneys.
If your mast cells are still haywire when you start pushing toxins through that system, it is likely to provoke them even more. Plus, things can get stirred up that can’t clear. Like trying to take out the trash when the roads are blocked.
The longer waste sits, the bigger the problem gets, the more your mast cells react.
This is often why people start reacting or feeling worse during detox protocols. Many are told that feeling worse before feeling better is normal. With MCAS, that is rarely good advice. What gets labeled a Herx (a temporary immune response that resolves in a few days) is most often a mast cell flare, and the two are not the same thing.
Pushing through a mast cell flare can set you back significantly. It is not a sign that detox is working. It is a sign that you are pushing harder than your body can keep up with, and you need to slow down. There are bottlenecks to address first.
As Alex, one of our Lead Practitioners, puts it: “If you’re having symptoms, you have to stop and reconsider what’s going on.”
What Makes a Difference with Detox
- Stabilization first. Calmer mast cells, supported nervous system, regular bowel movements, basic gut and nutritional support ā this is the preparation work that makes everything else more effective and more tolerable.
- The clinic rule of thumb: no poop, no binder. You need daily elimination before you add binders like charcoal or clay.
- When you are ready for binders, time and target them carefully, and go slowly.
- Donāt ignore issues or push through flares. Worsening reactivity, more flares, increased constipation or diarrhea, and other symptoms increasing are often signals to slow down and be curious. They mean the system is overwhelmed, not that you just need to try harder.
Related Post: How to Gently Detox Your Body from Mold and Mycotoxins
One Last Thought
Mast Cell Activation Syndrome rarely comes alone.
You might also be living with things like:
- Ehlers-Danlos Syndrome (EDS) / hypermobility
- Small Intestinal Bacterial Overgrowth (SIBO)
- Small Intestinal Fungal Overgrowth (SIFO) / Candida
- Lyme, Bartonella, Babesia
- Chronic infections like EBV (Epstein Barr Virus)
- Dysautonomia / POTS (Postural Orthostatic Tachycardia Syndrome)
- Food intolerances like Histamine Intolerance, FODMAP Intolerance, or Oxalate Intolerance
- CIRS (Chronic Inflammatory Response Syndrome)
- ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
- Autoimmune conditions
- Fibromyalgia
- Migraines
And healthcare is often set up so you have a different provider for every condition. Seeking medical care matters and we encourage it. But it can also be worth asking what’s driving all of these things at the same time.
In the population we work with, focusing on individual conditions without addressing mold first often makes progress difficult, or impossible. Others do significant work to get better, only to have things creep back in.
Related Post: Lyme, SIBO, Candida, EBV in Mold Toxicity ā Why won’t they go away?
Nervous system work can be part of the missing piece too. For many people, it accounts for 50% or more of the healing process.
If you’ve been stuck addressing symptoms without much progress, it may be time to look at what’s going on underneath and consider the order in which you address things.
Related Post: The Mast Cell 360Ā® Method
A Word of Encouragement
We sincerely hope this has helped you understand some of the most common challenges we see with clients working on healing Mast Cell Activation Syndrome, Histamine Intolerance, and Mold Toxicity.
We want to offer you the encouragement that we do see people making progress every day. Symptoms can and often do get better over time. And getting your life back is possible.
If you’ve been trying to figure this out on your own and keep hitting walls, this is exactly what our clinic team helps with.
Can Mast Cell Activation Syndrome go away? Sometimes it does. And for most people, it can get dramatically better. What does healing mean to you? Let us know in the comments below.
More Resources from Mast Cell 360
- What Are Mast Cells? Mast Cell Activation Syndrome 101
- Customizing Your Flare Plan for Mast Cell Activation Syndrome and Histamine Intolerance
- Mast Cell Activation Syndrome (MCAS) Symptoms Survey ā Mast Cell 360
- Low Histamine Foods List for Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance
- Do You Have One or Both? Histamine Intolerance vs MCAS (Mast Cell Activation Syndrome)
- MCAS Symptoms: Debunking Myths About Mast Cell Activation Syndrome and Histamine Intolerance
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References
Afrin, L., Ackerley, M., Bluestein, L., Brewer, J., Brook, J., Buchanan, A., Cuni, J., Davey, W., Dempsey, T., Dorff, S., Dubravec, M., Guggenheim, A., Hindman, K., Hoffman, B., Kaufman, D., Kratzer, S., Lee, T., Marantz, M., Maxwell, A., McCann, K., McKee, D., Menk Otto, L., Pace, L., Perkins, D., Radovsky, L., Raleigh, M., Rapaport, S., Reinhold, E., Renneker, M., Robinson, W., Roland, A., Rosenbloom, E., Rowe, P., Ruhoy, I., Saperstein, D., Schlosser, D., Schofield, J., Settle, J., Weinstock, L., Wengenroth, M., Westaway, M., Xi, S. & Molderings, G. (2021). Diagnosis of mast cell activation syndrome: a global āconsensus-2ā. Diagnosis, 8(2), 137-152. https://doi.org/10.1515/dx-2020-0005
Maintz, L., & Novak, N. (2007). Histamine and histamine intolerance. American Journal of Clinical Nutrition, 85(5), 1185ā1196.
Theoharides, T. C., Valent, P., & Akin, C. (2015). Mast cells, mastocytosis, and related disorders. New England Journal of Medicine, 373(2), 163ā172.
Weinstock, L. B., et al. (2021). Mast cell activation syndrome and the link with long COVID. Current Allergy and Asthma Reports, 21(8), 1ā11.
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