• Dr Ahmed
  • Posts
  • Could Mast Cell Activation Be Behind Your Symptoms

Could Mast Cell Activation Be Behind Your Symptoms

Understanding Mast Cell Activation Syndrome and its role in fibromyalgia, long COVID, and ME/CFS.

Hi Friend

Mast Cell Activation Syndrome (MCAS) is increasingly recognised as part of the puzzle in chronic conditions like fibromyalgia, ME/CFS, long COVID, Ehlers-Danlos syndrome, and POTS (Postural Orthostatic Tachycardia Syndrome). Yet, many people live with its symptoms for years before it is considered.

Let’s break it down — what MCAS is, how it can affect you, and what you can do about it.

🧬 What Are Mast Cells and Why Do They Matter?

Mast cells are part of your immune system — like the body’s early warning system. They sit in tissues that interact with the outside world:

  • Skin

  • Gut lining

  • Respiratory tract

  • Blood vessels

They store and release over 200 chemicals (called mediators), such as:

  • Histamine — causes itching, flushing, hives, and swelling

  • Tryptase — involved in tissue repair, but can contribute to inflammation

  • Prostaglandins and leukotrienes — contribute to pain, swelling, gut issues

  • Cytokines — drive immune responses

In MCAS, mast cells release these mediators inappropriately or excessively in response to triggers — or sometimes with no clear trigger at all.

⚠️ What Are the Symptoms of MCAS?

MCAS is a "great mimicker" because it can affect almost every system. People often experience:

Skin:

  • Flushing, hives, itching, easy bruising

  • Swelling of lips, eyes, or tongue (angioedema)

Gut:

  • Nausea, bloating, cramping, diarrhoea, reflux

  • Food sensitivities

Respiratory:

  • Nasal congestion, asthma-like wheezing, shortness of breath

Cardiovascular:

  • Palpitations, lightheadedness, fainting

  • Low blood pressure during flares

Neurological:

  • Brain fog, headaches, migraines

  • Anxiety-like sensations (often driven by histamine release)

Other:

  • Joint and muscle pain (especially in those with Ehlers-Danlos or fibromyalgia)

  • Fatigue, temperature sensitivity

🌱 Common Triggers for MCAS Flares

People with MCAS may react to:
⚡ Heat or cold
⚡ Stress (emotional or physical)
⚡ Infections or injuries
⚡ Alcohol
⚡ Certain medications (opioids, NSAIDs, contrast dyes, some anaesthetics)
⚡ High-histamine foods (see diet tips below)

🩺 How Is MCAS Diagnosed?

There’s no single test for MCAS. Diagnosis usually combines:
1️⃣ History of recurrent multisystem symptoms suggestive of mast cell mediator release
2️⃣ Evidence of abnormal mediator levels (sometimes elevated tryptase, prostaglandin D2, urinary histamine metabolites — often normal between flares)
3️⃣ Symptom improvement with treatments that block or stabilise mast cells

👉 Tip: Keeping a detailed symptom and food trigger diary can be crucial in identifying patterns.

💊 Management Options for MCAS

🔹 Medications

  • H1 antihistamines: cetirizine, loratadine, fexofenadine (for itching, flushing, hives)

  • H2 antihistamines: famotidine, ranitidine (for reflux, gut symptoms)

  • Mast cell stabilisers: cromolyn sodium (oral), ketotifen (oral, sometimes topical for eyes)

  • Leukotriene inhibitors: montelukast

  • Low-dose aspirin (only in some, under medical guidance)

⚠️ Always start low and go slow — people with MCAS can be sensitive to medications.

🔹 Lifestyle Strategies

  • Low-histamine / mast-cell-friendly diet (see below)

  • Stress management (e.g. meditation, gentle yoga)

  • Avoid extreme temperatures

  • Gentle exercise pacing

🍽️ Low-Histamine Diet: A Starting Point

Histamine builds up in food over time, so fresh is best.

✅ Safer options:

  • Freshly cooked chicken, turkey, white fish

  • Rice, quinoa, oats

  • Most fresh vegetables (except tomato, aubergine, spinach, avocado)

  • Fresh fruits like apples, pears, blueberries (avoid citrus at first)

  • Olive oil, coconut oil

❌ Common triggers to avoid:

  • Aged cheese

  • Cured / smoked meats (salami, ham)

  • Alcohol (especially wine, beer)

  • Vinegar, pickles, soy sauce

  • Fermented foods (yogurt, kefir, sauerkraut)

  • Leftovers kept too long

🛒 Example Shopping List (Low-Histamine Friendly)

  • Fresh chicken breast or turkey

  • Fresh white fish (cod, haddock)

  • Courgettes, carrots, green beans, lettuce, cucumber

  • Apples, pears, blueberries

  • Rice, quinoa, oat cakes

  • Olive oil, coconut oil

  • Herbal teas (rooibos, chamomile — test tolerance)

👉 Tip: Freeze portions of cooked meat or fish straight away if not eating immediately.

Research suggests MCAS may overlap with:

  • Fibromyalgia: Some people with fibromyalgia have elevated mast cell markers in muscle tissues.

  • Long COVID: Emerging studies (Weinstock 2021, Afrin 2020) link long COVID symptoms to mast cell activation.

  • POTS / EDS: High rates of MCAS in people with these conditions point to shared connective tissue and autonomic system vulnerabilities.

📝 Final Thoughts

MCAS can feel overwhelming — but understanding your body’s triggers and responses is the first step toward managing it. If you suspect MCAS, work with a knowledgeable clinician, and consider tracking your symptoms to spot patterns. Next week we will look into management options in more detail

I Help alot of people with MCAS, if you are interested to find out more please reply and I can help, or you can book a appt with me directly using the link below:

Best Wishes

Dr Ahmed

Reply

or to participate.