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.
CanĀ Mast Cell Activation SyndromeĀ go away?Ā
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.Ā Because healing means different things to different people.Ā Ā
Mast Cell Activation Syndrome (MCAS)Ā does sometimesĀ goĀ away entirely (remission). We see it happen more often in children, but itĀ sometimesĀ happensĀ forĀ adults too.Ā And it can depend onĀ many different factors.Ā ButĀ even whenĀ MCASĀ doesnātĀ go into complete remission,Ā thereĀ canĀ be dramatic improvements that last a lifetime!Ā
Healing with MCAS looks like:
- Needing far fewer supplements and daily medications, or evenĀ none at allĀ
- Being able to eat aĀ muchĀ wider variety of foods orĀ havingĀ no food restrictions atĀ allĀ
- Having far fewer reactions and sensitivitiesĀ Ā
- OnlyĀ needingĀ occasional support around specific triggers rather than constantĀ dailyĀ managementĀ
- Feeling like yourself againĀ Ā
That’sĀ a very differentĀ life than where most people start.Ā
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 clientsĀ
- DietaryĀ spiralsĀ
- HiddenĀ triggersĀ inĀ supplements andĀ medicationsĀ
- TooĀ much,Ā tooĀ fast ā how going slow actually makes more progressĀ
- EnvironmentalĀ triggersĀ
- DetoxingĀ out ofĀ orderĀ
- Where to consider startingĀ
These are challenges where we often see people stalledĀ or stuck, sometimes for years. And knowing about them might help you make progress.Ā
LetāsĀ get started!Ā
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 TimeĀ
SarahĀ started feeling āoffā after aĀ virus.Ā
She struggled with symptoms that didn’t seem to connect:
- FlushingĀ Ā
- Urticaria (hives)Ā
- HeadachesĀ Ā
- Brain fogĀ
- Nausea / vomiting
- Abdominal painĀ
- Nasal congestionĀ Ā
- Shortness of breathĀ
- Chest tightnessĀ Ā
- Low blood pressureĀ
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.Ā Ā
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 usĀ online:Ā Click here to visit our clinic pageĀ
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.
LetāsĀ look at the first roadblock we see.Ā
The 5 Most Common MCAS Healing RoadblocksĀ
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.
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
Roadblock 1: Dietary Restriction SpiralsĀ
This 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 aboutĀ the food.Ā ItāsĀ about healing the reasons you are reacting to theĀ foods. Diets are short-termĀ supports.Ā The goal is ALWAYSĀ to keepĀ as many foods as possible and expandĀ that.Ā Things like aĀ low histamine dietĀ are not meant to be a long-term solution.Ā Ā
- Swap instead ofĀ dropĀ wheneverĀ you can.Ā For example, replacingĀ a high-histamine food with a low-histamineĀ optionĀ (using arugula instead of spinach, for example)Ā is far more sustainable than just removingĀ them all.Ā Ā
- Check out theĀ Low Histamine Food ListĀ for ideasĀ
- Histamine acts like a bucket.Ā Things you can control (food) and things youĀ canātĀ 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.Ā
- IfĀ you’reĀ not sure where to startĀ with diet, histamine is a reasonable first step. Try reducing high-histamine foods forĀ 4Ā toĀ 6Ā weeks and seeĀ ifĀ you notice improvements.Ā Ā
- Freeze leftoversĀ immediatelyĀ Ā
- Buy frozen, unaged meats. HistamineĀ buildsĀ asĀ food sits, and meat is one of the biggest culprits.Ā
- If you notice small improvements, but not as much as you hoped, you are still on the right track! You just need to add otherĀ supportsĀ and consider other triggers.Ā
- If oxalates are a concern, reduce no more than 5ā10% per week.Ā DO NOT stop oxalatesĀ cold turkey.Ā AnĀ oxalate dumpĀ can cause significant issues.Ā
- Focus on easy-to-digestĀ foods.Ā Soups, pressure-cooked proteins,Ā soft foods,Ā and blendedĀ mealsĀ can be easier to digest and require less energy from your body.Ā
- Balance blood sugar.Ā Blood sugar swings can activate mast cellsĀ and increase histamine. Smaller,Ā regular,Ā balanced meals withĀ fiber,Ā protein, fat, and complex carbsĀ canĀ help.Ā Ā
- Get light in your eyes first thing in the morning.Ā ThisĀ doesnātĀ sound like a food issue, but it is.Ā Morning light exposure (ideally within 30 minutes of waking) triggers aĀ cortisol responseĀ that sets your circadian rhythm for the day. That rhythm directlyĀ influencesĀ when digestive enzymes are produced, when stomach acid peaks, and when gut motility is most active.Ā
- When reintroducing foods, start with one bite, wait three days.Ā Mast cell reactions can be delayed, so give yourself time.Ā If youĀ donātĀ react to one bite, try two the next time. Work up slowly and keep the amount that youĀ donātĀ react to in your diet.Ā Ā
Related Post:Ā Understanding Food Intolerances with MCASĀ
Let’s look at some common places we see triggers hiding next.
Roadblock 2: Hidden Triggers in Supplements and MedicationsĀ
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)Ā
- CetirizineĀ (Zyrtec)Ā
- FexofenadineĀ (Allegra)Ā
- Famotidine (Pepcid)Ā
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:
- NiacinĀ is a histamine liberator.Ā ItĀ causesĀ mast cells to release histamine, which is why peopleĀ experienceĀ flushingĀ when they take it.Ā Ā
- NSAIDS (non-steroidal anti-inflammatory drugs)Ā canĀ trigger mast cells.Ā
- Citrates, like magnesium citrate,Ā can also tip theĀ histamineĀ bucket for many people.Ā Ā
- Anything that pushesĀ methylation or detox pathwaysĀ (methylated B12, methyl folate, glutathione)Ā can backfire if your systemĀ isn’tĀ stable enough yet.Ā
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.Ā If you react andĀ you’veĀ started three things at once,Ā you’reĀ back to square one.Ā One thing means you actually know what is helping or not.Ā
- Start small.Ā When you are trying something new for the first time, use just a drop or sprinkle and wait 3 days to see how youĀ do withĀ it. Small starts mean smaller reactions when they do happen, and faster recovery.Ā Ā
- Read the full ingredient list, not just the “active” section.Ā While anyone can react to anything with MCAS, there areĀ a fewĀ things that areĀ knownĀ mast cell or histamine triggers.Ā Ā
- To read more about ingredients to watch for read our post:Ā The BestĀ AntihistaminesĀ for Histamine Intolerance and MCASĀ
- Compare ingredients.Ā If you keep reacting to things, look at what ingredientsĀ show upĀ repeatedly across your supplements or medications to help narrow down what you react to.Ā Ā
- Consider a compounding pharmacyĀ for medications, if needed. They can work with you to find fillers that you tolerate better.Ā Ā
Check outĀ our low-costĀ Substack SubscriptionsĀ with this related post and printable list:Ā Practitioner Tip: Are Fillers and Other Ingredients Sabotaging your Stabilization?Ā
Roadblock 3: Too Much, Too FastĀ
PractitionersĀ oftenĀ donātĀ understandĀ MCASĀ so they go too fast.Ā And peopleĀ justĀ want to feelĀ better, which isĀ completely understandable.Ā Ā
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 protocolsĀ by their practitionersĀ thatĀ justĀ werenātĀ designed for sensitive people. They go straight to detox orĀ drainage andĀ assume a baseline of tolerance and capacity that many people with Mast Cell Activation Syndrome simplyĀ don’tĀ have yet.Ā
This is why stabilization is so important as a first step. And approaching things in a more mast-cell friendly way.Ā Ā
What helps:Ā Slowing Things Down
Here are a few tips we give clients:
- Change one thing at a time.Ā It sounds slower, butĀ it’sĀ how youĀ actually moveĀ forward.Ā
- Don’tĀ introduceĀ newĀ thingsĀ during aĀ flare.Ā Wait for a more stableĀ period.Ā
- Start lower than you think you need toĀ and go up slowly.Ā ItāsĀ okay to stay at whatever amount you tolerate best.Ā
- If youĀ haven’tĀ reacted to a sprinkle, that’s good news, not a sign itĀ isn’tĀ working. It means youĀ haven’tĀ yet hit a therapeutic amount, and you can slowlyĀ work upĀ from there.Ā
- Keep a simpleĀ changesĀ journalĀ ā date, what changed, and what you noticed three days later. Not toĀ fixate onĀ what’sĀ wrong, but to haveĀ a few notes to refer to.Ā Ā
Related Post:Ā The Mast Cell 360Ā® Method: Healing MCAS in the Right Order for Sensitive BodiesĀ
Keep reading to learn more about removing triggers.
Roadblock 4: Environmental Triggers You Haven’t Found YetĀ
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 mycotoxinsĀ
- Chemicals in cleaningĀ orĀ bodyĀ and skincareĀ productsĀ
- Chemicals and pesticides in foodsĀ
- EMFsĀ (electromagnetic fields)Ā
Think of this piece like a phone running too many apps in the background. You might not even noticeĀ it happening. Nothing looks like an obvious issue.Ā Ā
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 mastĀ cellsĀ low-grade signals to respondĀ toĀ or toxinsĀ (mold, chemicals, EMFs)Ā youĀ have to clear out, that allĀ requiresĀ energy and resources.Ā Ā
ItĀ creates a background burden thatĀ quietlyĀ eats through your capacity. EvenĀ whenĀ you’reĀ doing everything else rightĀ
TheĀ most commonly missedĀ 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:Ā Mold Toxicity Symptoms with MCASĀ
Fridge water filters are another exposure most peopleĀ don’tĀ think about. The lines stay constantlyĀ moist, which isĀ an ideal environment for mold.Ā
Unfiltered tap or well water can also be filled with other contaminants.Ā
Chemicals in cleaning products and personal care (especially for those with salicylate sensitivity), and EMF exposure are alsoĀ worth considering.Ā
Pick just one area to investigate.Ā YouĀ don’tĀ have to overhaul everything at once.Ā
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,Ā bakingĀ sodaĀ and vinegar instead of the chemicalĀ cleaners,Ā andĀ so on.
- Related Post:Ā Safe Skincare for Those With Mast Cell Activation SyndromeĀ
- Related Post:Ā Non Toxic Cleaning ProductsĀ
- Clean air and clean water. A good air purifier for the room you spend the most timeĀ inĀ and a quality water filter are two of theĀ highest-leverageĀ changes you can make.Ā
- 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 anĀ ERMIĀ (Environmental Relative Moldiness Index)Ā rather than relying onlyĀ on airĀ testing.Ā An ERMI is a DNA dust test you can do yourself:Ā Home Mold Testing as Part of Your MCAS Mold Detox PlanĀ
Related Post (for Substack Subscribers):Ā Practitioner Tip: Environmental Triggers to Consider with MCASĀ
Let’s look a little closer at gentle detox next.
Roadblock 5: Detoxing Out of OrderĀ Ā
The word “detox” gets thrown around a lot. But here’s a helpful way to think about it.
Detox is a complex, multi-stepĀ processĀ 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 areĀ essentially askingĀ 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.Ā That’sĀ the trash can.Ā
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 stillĀ haywireĀ when you start pushing toxins through that system, it is likely to provoke them even more.Ā Plus,Ā thingsĀ canĀ get stirred up thatĀ can’tĀ 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.Ā Calmer mast cells,Ā supported nervous system, regular bowel movements, basicĀ gutĀ and nutritional support ā this is the preparation work that makes everything else more effective and more tolerable.Ā
- The clinic rule of thumb:Ā no poop, no binder. You need daily eliminationĀ before you addĀ binders like charcoal or clay.Ā
- When you are ready for binders, time and target them carefully, and go slowly.Ā
- DonātĀ ignore issues or push through flares.Ā Worsening reactivity, more flares, increasedĀ constipationĀ or diarrhea, andĀ other symptoms increasingĀ areĀ oftenĀ signals toĀ slow downĀ and be curious. They mean the system is overwhelmed, not that you just need to try harder.Ā
Related Post:Ā How to Gently Detox Your Body from Mold and MycotoxinsĀ
One LastĀ ThoughtĀ
Mast Cell Activation Syndrome rarely comes alone.
You might also be livingĀ with things like:Ā
- Ehlers-Danlos Syndrome (EDS)Ā /Ā hypermobilityĀ
- SmallĀ IntestinalĀ Bacterial Overgrowth (SIBO)
- Small Intestinal Fungal Overgrowth (SIFO) / CandidaĀ
- Lyme, Bartonella, BabesiaĀ
- Chronic infections like EBV (Epstein Barr Virus)Ā
- Dysautonomia /Ā POTSĀ (Postural Orthostatic TachycardiaĀ Syndrome)Ā
- Food intolerances like Histamine Intolerance, FODMAP Intolerance, or Oxalate IntoleranceĀ
- CIRS (Chronic Inflammatory Response Syndrome)Ā
- ME/CFS (MyalgicĀ Encephalomyelitis/Chronic Fatigue Syndrome)Ā
- Autoimmune conditionsĀ
- FibromyalgiaĀ
- MigrainesĀ
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:Ā Lyme, SIBO, Candida, EBV in Mold Toxicity ā Why won’t they go away?Ā
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 EncouragementĀ
WeĀ sincerely hopeĀ this has helped you understand some of the mostĀ common challengesĀ we see with clientsĀ working on healing Mast Cell Activation Syndrome, Histamine Intolerance, and Mold Toxicity.
We want to offer you the encouragement thatĀ we do see people making progress every day. SymptomsĀ can and often do get better over time.Ā And getting your life back is possible.Ā Ā
IfĀ you’veĀ been trying to figure this out on your own and keep hitting walls, this is exactly what our clinic team helps with.Ā
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 360Ā
- 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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ReferencesĀ
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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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