Got a Mysterious Chronic Condition? It Might be Mast Cell Activation Syndrome

Inna Topiler Health Mysteries Solved Podcast

The Doctors Completely Missed the Connection between Symptoms and Failed to Diagnose Mast Cell Activation Syndrome

The Case: 

  • Julie has digestive issues, headaches, lots of skin rashes and irritation, brain fog, and fatigue
  • She is also very sensitive to environmental triggers like fragrances, smoke, and chemicals.  
  • She eats and lives as clean as possible but nothing seems to help. 
  • She’s seen a dozen doctors who have prescribed a variety of medications but nothing helped. 

It’s so common for conventional doctors to focus on treating the symptoms as if they are unrelated instead of considering what the collection of symptoms might mean. Julie knew that her symptoms had to be connected which is when she reached out to me. My feeling was that this was a systemic issue and we got to work investigating the root cause of her problems. 

The Investigation

With my suspicions of a systemic issue, I knew that Beth O’Hara would be a great source of information. She’s been on Health Mysteries Solved before to speak about Oxalates (episode 67) and Histamines (episode 81). This time, I wanted to dive into the topic of Mast Cells and Mast Cell Activation Syndrome which is Beth’s expertise.

What are Mast Cells?

Mast cells are one of the most important types of immune cells in our bodies. They’re present at every interface between our bodies and the outside world, and they’re also found in every single tissue except for the retina. So, if we think about that, they’re in the skin, in the lining of the sinus passages, in the digestive tract from the mouth to the stomach, and they’re also found in muscles and bones. They migrate to very important areas like nerve endings and the brain’s limbic system.

Mast cells are responsible for a number of functions ranging from the sleep-wake cycle to pregnancy and wound healing. They also help the body monitor for whether or not we’re safe from things like toxins, mold, candida, pathogens, parasites, viruses and bacteria. They even monitor for co-infections (like lyme disease). Mast cells are also looking for all types of stressors including psychological stress, physical stress and stress caused by outside factors like electromagnetic fields (EMF) in the environment.

How do Mast Cells Work?

Mast cells use what are called receptors – you can think of them like little antennae on the outside of the cell. There are over 200 of these receptors sending out signals using mediators. There are over 1000 different mediators. All of these allow the cells to connect with and monitor the different functions of the body. 

When a mast cell detects an issue it will respond, often causing inflammation. It is not the only immune response but it is one of the primary cells responsible for answering a threat to the immune system. 

The problem is that our modern world has more threats to the immune system that can cause mast cells to react. These include things like mold, high levels of EMF (wifi, smart homes, etc add to these high levels), environmental chemicals and other toxins. The challenge is that the mast cells are constantly triggered (or in activation) by these things and they don’t have time to rest and reset. This can overwhelm the mast cells and create a chronic issue. 

The Link Between Autoimmunity and Mast Cell Activation

Mast cells are heavily involved in the development of various autoimmune diseases. The mast cells are involved in both innate and adaptive immunity. Mast cells respond to the initial threat from a pathogen but when that fails, they shift their response and this can be what causes chronic inflammation. This continues as long as there are unresolved root triggers over an extended period of time. Over time, this opens the door for the development of autoimmunity in people who are predisposed for it. 

So, if we want to avoid autoimmunity, we need to respond faster to the root trigger so that the mast cell response can be regulated. Regulating the mast cells can also reverse autoimmunity, in some cases, if you identify which mast cells have been activated. 

Different mast cells can be triggered (and often triggered together to create a bigger issue). For example, the GI mast cells and the skin mast cells. After determining which mast cells have been activated, you need to understand which receptors are now hyper-sensitive and which mediators are involved. 

Mast Cell Activation Syndrome Symptoms and Diagnosis

The complexity of what is happening is one of the reasons why it is so hard to diagnose MCAS. Beth says that the average diagnosis takes up to 10 years and the criteria for diagnosis is still being debated. She shared that a population study (pre-COVID) found that up to 17% of the population are dealing with MCAS. That’s hundreds of millions of people with MCAS, the majority of which are undiagnosed. Experts speculate that up to 75% of all chronic illness could involve MCAS.

While there is a long list of potential symptoms, Beth shared some of the most common. The symptoms of Mast Cell Activation Syndrome include:

  • Pain in the muscles and joins
  • Brain fog
  • Fatigue
  • GI issues like: 
    • Diarrhea
    • Constipation
    • Bloating
    • Pain (in the gut or stomach)
    • Discomfort after eating
    • Esophagus swelling
    • Mouth burning
    • Acid reflux
  • Depression or anxiety
  • Insomnia (especially falling asleep or waking up between 2-4 am)
  • Skin issues including:
    • Rashes
    • Hives
    • Psoriasis
    • Eczema
  • Bladder Interstitial Cystitis (urinary pain and burning)
  • Hormonal issue (hormonal imbalances)
  • Breathing issues including:
    • Shortness of breath
    • Excess sinus mucus production (postnasal drip)
  • Hypersensitivity (often to fragrances)

To assess your symptoms, Beth has a free Symptoms Survey you can take here. There are some lab tests that will also help to diagnose MCAS but these tests are limited so it’s important to also consider the symptoms. 

What to do if You Suspect You Have Mast Cell Activation Syndrome

This is a tricky question because the criteria for diagnosing MCAS is not universally agreed on (and false negatives can happen with lab testing). In addition, there is a lot of contradictory information on the internet which can be frustrating for anyone trying to figure things out on their own. And, may discover that one person’s solution is another person’s poison. 

Beth uses a 5-step process which starts with the stabilization phase of calming everything down. This has to happen before doing major detoxification because that can trigger the mast cells.

The stabilization phase starts with addressing issues in the nervous system. Beth’s program focuses first on retraining the limbic system and then she addresses the vagal nerve system and finally deals with any structural issues that might be affecting the nervous system like a head or neck injury. 

After this phase, Beth’s plan moves into a gentle detox. This is more often than not, going to include dealing with mold exposure. 

The next step in Beth’s process is to decrease the infectious load. This can often mean addressing Lyme disease and the co infections that can come with it. 

The fourth step in her process is to rebuild. This usually includes repairing the gut lining and improving the overall GI system. It may also include rebalancing the hormones and the mitochondria.

The fifth and final step is to optimize. For this, Beth looks at the genetics (noting weaknesses that may need additional support) and then creates a wellness plan. 

The whole 5-step process takes 2-4 years. She says there is no quick fix for reversing mast cell activation syndrome. 

Mystery Solved

Mast Cell Activation Syndrome is way more common than people realize and it became clear that Julia was one of these people. 

To get started, I worked with Julie on calming her immune system through various modalities both biochemical as well as energetic and emotional, especially on the trauma side. We also found out she was very sensitive to EMFs so we supported that.

We did some investigating into her triggers, infections, toxic exposure, and food sensitivities. We then used targeted supplements like quercetin to support her immune system. 

We discovered she was an over-methylator so we decreased the methyl donors she was taking and supported her methylation instead. For more details on methylation and how it can impact your energy and wellbeing, listen to episode 108.

We wanted to make sure that mold wasn’t contributing to her condition. Julie was living in a brand new house, but as it turns out she did have past mold exposure which was still affecting her. We used a combination of Biotoxin Binder, high dose vitamin C, Molecular Hydrogen as well as some gentle antifungals to help support her body.

Conclusion

We took things slowly because Julie was very sensitive and we didn’t want to set up any new triggers. And, we understood that reversing Mast Cell Activation Syndrome takes time. 

Eight months into the protocol she started to really see an improvement with her digestion, energy and brain fog. Her skin was also less reactive. We still have work to do, but she and I are so encouraged with her progress and excited to see more and more in the coming months.

Eliminating Health Mysteries

For Julie we were able to find that missing piece of the health puzzle and get her on the road to renewed health. Could MCAS be the missing clue for you or someone in your life? 

Links:

Resources mentioned

Thanks to my guest Beth O’Hara.  You can connect with her through her website, MastCell360.com

If you think histamine intolerance or Mast Cell Activation Syndrome may be causing your health mysteries, don’t miss Beth’s free, 3-day event with over 40 experts sharing their knowledge.

Mast Cell Activation and Histamine Intolerance Summit Oct. 28 – 30, 2022 – Online

Suggested Products

Quercetin

Biotoxin Binder

Vitamin C

Molecular Hydrogen 

Related Podcast Episodes:

The Case of Fatigue and Brain Fog Made Worse by B Vitamins

The Mystery of Histamine Overload w/ Dr. Beth O’Hara

How Very Healthy Foods can Create Aches, Pain and UTI Symptoms w/ Dr. Beth O’Hara

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PLEASE NOTE

All information, content, and material on this podcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider.

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Hi, I'm Inna!

I am obsessed with getting to the real root of health mysteries. Whether you are suffering from a major health issue like an autoimmune disease or have nagging and frustrating symptoms like fatigue, stomach discomfort, pain, insomnia, brain fog, PMS, skin issues, etc… they have a big impact on how you live your life. You don’t have to suffer. Together we can change that!