This post discusses the pros and cons of using Cromolyn Sodium for MCAS. I had been resistant to trying Cromolyn Sodium for a few years because I knew it was expensive, and I wanted to try to heal my MCAS without prescription medications. But after months of declining symptoms, I decided to try it for the first time. After one dose, I knew it was a game-changer. My constant heartburn evaporated, my hives cleared up, and my brain fog lifted. It wasn’t a straight-line improvement after that, but the benefits I saw immediately sold me on its potential.
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Table of Contents
Who is Betsy Leighton?
I’m a writer, blogger, and healer dedicated to helping individuals reconnect with their innate peace and wholeness by healing nervous system dysregulation. My personal experience with chronic illness called Mast Cell Activation Syndrome (MCAS) shapes my work, and my content offers tools to empower those with chronic illness to improve their well-being and take charge of their health.
I created the Sacred Self-Healing Method and am a trained and certified Safe and Sound Protocol provider, an author, blogger, and A Course in Miracles Teacher. I hold a Master of Divinity in Spiritual Counseling and am a trained spiritual mentor, with certificates in sound healing, aromatherapy, nutrition, and Sacred Deathcare. I offer a self-study certificate program in the Sacred Self-Healing Method, provide spiritual counseling and coaching, courses, and supported subscriptions for the Safe and Sound Protocol.
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. It can cause severe, disabling symptoms every day, including potentially fatal anaphylaxis.
The common triggers for MCAS are infections, toxic exposures including mold exposure and EMFs, trauma, concussions, and stress.
MCAS often occurs with other chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Managing MCAS is challenging because many healthcare providers are unaware of it, and diagnostic tests can be unreliable. Treatments include antihistamines and mast cell stabilizers in the form of medications and supplements, along with avoiding triggers. Check out this post on managing MCAS.
Why use cromolyn sodium for MCAS?
Originally, Cromolyn Sodium was prescribed as an asthma medication. But it has been used for mast cell disorders for some time. Patients with MCAS have often been prescribed antihistamines as the first treatment option. If that isn’t enough, Gastrocrome (Cromolyn Sodium) is usually the second-line defense.
Cromolyn Sodium is a mast cell stabilizer, so it keeps mast cells from releasing their mediators. From what I’ve read, Cromolyn Sodium is primarily effective for gut-related MCAS symptoms, like gas, bloating, constipation, diarrhea, and stomach pain. However, in addition, it can also be helpful for itchy skin, hives, bone pain, and flushing. Cromolyn is also known to be anti-inflammatory.
Why not use Cromolyn Sodium for MCAS?
Cromolyn sodium is generally well tolerated, but: “The most frequently reported adverse reactions in patients with mastocytosis who received oral cromolyn sodium solution in clinical studies were headache, diarrhea, pruritus, nausea, myalgia, abdominal pain, rash, and irritability.” – source
So, one of the drawbacks of cromolyn sodium is that it can cause side effects that are similar to the actual symptoms of MCAS. That can make it hard to tell if you are seeing improvement from the drug.
Another drawback, or con, of taking Cromolyn Sodium, is that it takes time to get into your system and show benefits. While I experienced the best sleep in several years after the first dose of Cromolyn Sodium, it was an up-and-down ride to find the dosage I could tolerate. I started at 1/8 of the suggested dosage once a day and gradually increased it over several weeks to 1/4 of the standard dose.
I found that as soon as I started to increase Cromolyn Sodium dosing too quickly, I would get my tell-tale neurological symptoms of crazy migraines, neuropathy, and sciatic pain. Paradoxically, those are my worst MCAS symptoms! So, it can take a while to reach the full dosage of Cromolyn Sodium, but it can be well worth it!
Other drawbacks of using Cromolyn Sodium for MCAS
Cromolyn sodium can be a helpful drug to add as a daily medication when you first get MCAS, and if you experience a big symptom flare. Many functional providers do prescribe cromolyn sodium but advocate for shorter-term use. Skeptics point out that its usefulness wears off over time, and you require more and more of the medication to get the same results.
My case of using cromolyn sodium for MCAS
In my case, I started taking cromolyn sodium before I began to SIBO treatment in 2023. I knew that I was already at the limits of coping with my mast cell symptoms. I was having daily reactions to everyday triggers, and I didn’t want to be reacting to the treatments that would ultimately make my MCAS better (with my SIBO under control, the mast cells in my gut could calm down).
So I started Cromolyn Sodium to calm my mast cells so that they could more easily adjust to the stress of treating the SIBO infection. I found that Cromolyn Sodium was hugely helpful in stabilizing my mast cells – so much so that I feel I breezed through the SIBO treatment.
In my case, it was totally worth it to start Cromolyn Sodium to have the mast cell support I needed to get through the breath test for SIBO, which requires a prep of a limited diet, and the week of the Specific Carbohydrate Diet (SCD), which was severely limiting.
How much is cromolyn sodium used?
Cromolyn sodium is the 3rd most tried and the 2nd most effective treatment for mast cell activation syndrome among respondents. – Source
40% of users say that Cromolyn Sodium works “Very Well,” and 48% of users say it works “Fairly Well.” It compares fairly similarly to Ketotifin Fumerate, which 41% of users say works “Very Well,” and 41% say works “Fairly Well.” – Source
Obesity, high cholesterol, and Cromolyn Sodium
Not long before I started Cromolyn Sodium, I found out that my cholesterol had risen from about 150 to 240 over the course of the last year. I was alarmed at my cholesterol levels and started researching the MCAS-cholesterol relationship. What I found is that many people with MCAS also have incidences of obesity, hypertension, and high cholesterol. I learned about the “Cholesterol Paradox” with MCAS, which is that people with mast cell disorders have a higher prevalence of cardiovascular events. – Source
I had also gained over twenty pounds in the last year since my MCAS diagnosis. But I further learned that mast cells are heavily involved in obesity, hypertension, and atherosclerosis. – Source So, many mast cell patients have problems with high blood pressure, high cholesterol, and obesity. Luckily, I learned that Cromolyn Sodium has been shown to decrease obesity in MCAS patients. – Source
And better yet, Cromolyn sodium has also been shown to reduce cholesterol. – Source Specifically, “Treatment with cromolyn has been shown to block mast cell-dependent LDL uptake by macrophages.” – Source
This news was enough to help me push through the initial discomfort of starting Cromolyn Sodium.
But a bonus I discovered is that Cromolyn Sodium has been shown to help with liver disease too. – Source
And a double bonus: Cromolyn Sodium has been shown to help reduce thyroid cancer. – Source
Cromolyn sodium forms and dosing
Cromolyn sodium is available as powders, capsules, and liquid-filled ampules that are broken open and mixed with water. Cromolyn Sodium can also be compounded into myriad forms. Every form has its pros and cons. I have taken the ampules and a compounded suspension in olive oil. It is a bit of a hassle to mix the liquid in the ampules with water when you are tired or groggy first thing in the morning. Measuring the compounded olive oil into a tiny syringe can get tricky, too, when you are exhausted. I learned the hard way how sensitive I was to a slight shift in dosage by experiencing one of the most bizarre and painful migraines of my life after taking a little bit too much Cromolyn Sodium.
Timing of administration
The package insert suggests taking Cromoly Sodium 30 minutes before eating. After talking with my pharmacist, I also learned that you should take it at least 2 hours after eating or taking other medications/supplements, as it can interfere with the absorption of some medicines. Some of the worst heartburn of my entire life occurred after taking cromolyn sodium too close to a meal.
My current Cromolyn Sodium dosing schedule is:
5 a.m. (eat breakfast and take supplements/meds around 6 a.m.)
9:30 a.m. (eat lunch and take meds around 10:30 a.m.)
1:30 p.m. (eat a snack around 3:30 p.m.)
7:00 p.m. (after a 5 p.m. dinner, and before my bedtime meds at 8:30 p.m)
The bucket theory
The bucket theory simplifies understanding symptom reactions with MCAS. Imagine your body as an empty bucket you don’t want to overflow. Reactions to various stimuli fill the histamine bucket at different rates, forming the total histamine level (how full your bucket is). More histamine means more symptoms. By managing triggers, reducing exposures, and taking medications and supplements, you can control your bucket’s level.
Know your typical symptom progression
Understanding your symptom progression during a flare is key to developing your rescue plan. This post discusses how to recognize symptom progression so you can be prepared to address them.
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Want a tool to easily track your symptoms?
Check out these circadian health tools!
I’m an affiliate with Bon Charge, a company that makes tools for circadian health, and you can receive 15% off your order with my coupon code BETSYL.
Bon Charge offers tools such as yellow– and red-tone blue-blocking glasses, red light therapy devices, PEMF mats, infrared saunas, and EMF-blocking products.
Sign up for the SSP!
I’ve found the Safe and Sound Protocol (SSP) to be the most helpful bottom-up healing strategy if your nervous system has been overloaded with toxic exposures, including mold or non-native EMFs, chronic infections, concussions, stress, or trauma. The SSP is a passive listening therapy that helps heal nervous system dysregulation. Many people with MCAS and other chronic conditions have nervous system dysregulation stemming from infections, toxic exposures, concussions, and trauma. The SSP is an easy-to-use app that lets you listen to specially filtered music for 30 minutes each day as part of a 5-hour cycle. Studies show the SSP has a profound effect on mental health and chronic conditions. Here’s a short podcast describing the Safe and Sound Protocol.
You can sign up for the SSP here!
Heal your mind!
While the SSP is a bottom-up, somatic therapy for healing the nervous system, the Sacred Self-Healing Method I offer is a top-down nervous system-healing modality that focuses on cognition, attention, perception, and emotion, using the mind’s higher functions. The SSP and the Sacred Self-Healing Method complement each other and together produce lasting results. Here’s a short podcast on my self-healing practice.
I provide one-on-one in-person and remote chronic illness and caregiver coaching, as well as Sacred Self-Healing Sessions based on the Sacred Self-Healing Method, a proven, novel co-creative healing modality detailed in my Books.
Order my books!
Here’s a short podcast highlighting my five books.
My latest book, Living In The Light: Healing with Forgiveness, Sound, and Light, is all about the tools that have been most helpful for me to heal: forgiveness, sound, through nervous system retraining using the Safe and Sound Protocol, and light, through entraining my circadian rhythm with the energy of the sun. Living In The Light is available here!
Rocks and Roots chronicles my solo backpacking journey on the Superior Hiking Trail and my efforts to overcome nervous system dysregulation, gut dysbiosis, and Mast Cell Activation Syndrome symptoms to complete the 328-mile hike successfully.
The Sacred Self-Healing Method ebook is available here and in most ebook retailers!
The Sacred Self-Healing Workbook is available for purchase here!
Betsy’s first book, Sacred Self-Healing: Finding Peace Through Forgiveness, is available here
Companion Recordings
The companion audio recordings of chants, guided meditations, and sound healing demonstrations that accompany the Sacred Self-Healing Method are available for free on my YouTube channel here
What do you think?
I’d love to have your reply below!
Disclaimer
The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure, or treatment.
