Top fit one minute, extremely tired the next? The Mysterious Mast Cell Activation Syndrome

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Do you often feel extremely tired and deeply miserable from one moment to the next? Do you have a motley crew of rare symptoms that no one can explain? Do you often feel sick, but ‘everything seems okay’? Perhaps you suffer from the mysterious mast cell activation syndrome. In this article, GP Anne Fleck, author of The healthy way out of the maze of fatigue , shows that there may be a very good reason behind your fatigue.

The symptoms are different from person to person. This makes the appearance of the MCAS as capricious as a chameleon, with the result that the most vague diagnoses are made.

The mast cell activation syndrome

Recent findings suggest that not only severe fatigue, but also other syndromes for which there is still no conclusive explanation – such as irritable bowel, fibromyalgia and histamine intolerance – can be caused by the so-called mast cell activation syndrome (MCAS). Mast cell… excuse me?! Trust me, it’s also unknown to many doctors.

The fact is that MCAS, which has only been intensively researched in recent years, may affect up to 17 percent of the population; and the statistics are constantly adjusted upwards. That is certainly no longer a ‘rare condition’. MCAS does not belong in the (damn) corner of rare diseases, but high on the ranking of public diseases. It is essential that intensive research into this phenomenon is carried out in the future. Everyone has mast cells. The only question is whether and to what extent we are individually affected by unhealthy mast cell activation.

Runaway mast cells

Mast cells, also called mastocytes , are white blood cells and are formed in our bone marrow. They are the gatekeepers of our immune system and are located everywhere in our body where there is contact with the outside world (for example, skin, mucous membrane and intestines). They stand guard, as it were, and have an important function in detecting, recognizing and combating pathogens and the repair of tissue damage. Mast cells are full of vesicles filled with more than 200 transmitters, which the mast cells release when they sense it is needed in communication with the cells around them. The best known transmitter is histamine.

Mast cells are activated by various stimuli. The MCAS syndrome develops when the mast cells are repeatedly activated by, for example, stress, loads of a bacterial, viral and/or environmentally contaminated nature or certain nutrients. They then react, as it were, like overzealous little pushers and go to work in an inadequate and exaggerated way. In the case of a severely disturbed intestinal flora, for example, it can be an excess of bacteria that causes the mast cells to release extra histamine and thus fuel the mast cell problem.

The vaguest diagnoses: but actually it’s MCAS

The symptoms are different from person to person. This makes the appearance of the MCAS as capricious as a chameleon, with the result that the most vague diagnoses are made. “You have an allergy.” “Probably just a cold.” “You ate something bad.” “You suffer from fibromyalgia and an irritable bowel.” The symptoms often arise in conjunction with the consumption of histamine-rich foods or high stress, and they can manifest periodically or persistently without the patients seeing any connection at all with what they have eaten. Fatigue and exhaustion are just one consequence of the activism that the mast cells can engage in.

Characteristic symptoms of mast cell activation syndrome (MCAS):

  • fatigue
  • skin: itching (on the scalp, anus or all over the body), red spots, flushing (sudden flushing of the face), rash such as pimples, hives (urticaria), sun allergy
  • mucous membrane: irritated eyes, sneezing, stuffy nose, persistent snotty, canker sores (painful blisters in the mouth), sinus infections, hoarseness
  • hot flashes
  • respiratory tract: chronic throat clearing and coughing (especially when stressed), asthmatic-like breath sounds in the bronchi, shortness of breath, severe respiratory distress
  • digestive tract: irritable bowel (sudden diarrhea and constipation, sometimes alternating, abdominal pain, flatulence, heartburn), unexplained swallowing disorders
  • musculoskeletal system: muscle pain, joint pain (fibromyalgia), muscle tremors, unexplained tremor
  • cardiovascular system: palpitations, cardiac arrhythmias, dizziness, low blood pressure (feeling about to faint)
  • nervous system: headache, migraine, unexplained dizziness, sensory disturbances (paresthesia), tingling, tremor, memory, concentration, coordination and sleep disorders
  • psychological health: anxiety, depression, reduced stress resistance, emotional exhaustion (burnout)
  • menstrual complaints
  • fluid retention (oedema, for example swollen eyelids)
  • susceptibility to infection
  • prone to inflammatory diseases (e.g. rheumatism)
  • painful, burning urinary bladder, urge to urinate (looks like clinical urinary tract infection!)
  • ‘Allergies’ to alcohol, salami, medicines

Important: Every case of MCAS is different. The symptoms mentioned can occur, but not necessarily. Many occur only temporarily and not at the same time. Therefore, few people get the idea that this diversity of symptoms is related. In addition, the severity varies from ‘it itches here and there’, ‘I am so tired and have to sneeze often’ to a serious illness. Fortunately, for most people, the impact is modest.

Recognize the instigators: what you can reduce to see if you experience fewer complaints

Symptoms are indicative but non-specific, meaning they can occur in other diseases as well. If you suspect impaired mast cell activation, I recommend testing possible triggers in your daily routines and watching for symptoms such as fatigue, indigestion, sneezing, a stuffy nose, itching or muscle pain and the like. If the complaints worsen, you should avoid such triggers and apply the Energy-Practice part of The healthy way out of the maze of fatigue . That is too extensive for this article. It also makes sense to ensure good micronutrient consumption with vitamins C and B6 and quercetin; that stabilizes the mast cells and supports the breakdown of histamine. These innovative approaches often result in major improvements.

Watch out for the following instigators:
  • Foods: histamine or so-called histamine releasers, are hidden in, for example, alcohol (red wine, sparkling wine, champagne), extra mature cheese, smoked fish, canned fish (tuna) and meat products (sausage), citrus fruit, tomatoes, strawberries, sauerkraut and food that has been reheated. Nuts, such as walnuts and shelled peanuts, can also trigger reactions.
  • If the body absorbs large amounts of histamine and/or the capacity to reduce histamine is weakened by a congenital or drug-built enzyme deficiency (diamine oxidase) and the body cannot regulate the excess histamine, a histamine intolerance develops. Patients generally feel better on a low-histamine diet.
  • Food additives (‘Additive intolerance’, ‘Chinese restaurant syndrome’ due to glutamate).
  • Medication: Acetylsalicylic acid (aspirin), painkillers (ibuprofen), X-ray contrast agents and many antibiotics, especially from the group of fluoroquinolones (eg ciprofloxacin or moxifloxacin).
Cheat sheet for medical consultation

In case of persistent symptoms, I recommend diagnosis with specific blood and urine tests (for example for diamine oxidase, the enzyme responsible for histamine breakdown, concentrations of transmitters such as tryptase, histamine and certainly also their breakdown products in the urine) and a stomach and intestinal mirror ( gastroscopy or colonoscopy) with tissue punctures. There is now also a test for histamine in faeces, which can also detect inflammatory processes in the intestinal mucosa at an early stage.

The runaway mast cells are generally well calmed by lifestyle changes (a low-histamine diet, stress reduction, intake of vitamins C, B complex, quercetin, and a nutritional supplement to restore the intestines) and the recommendations in the Practical part of The healthy way out of the maze of fatigue.

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