Mast cell activation syndrome (MCAS)

Mast cell activation syndrome (MCAS): Symptoms and treatment

Katharina JanBen M.Sc. – Osteopathy, Naturopath, Rastede, Germany

Dear colleagues,
| am Katharina JanBen, naturopath, and | studied osteopathy at the Fresenius University of Applied Sciences in Idstein. | completed my master’s degree in 2021. | have been self-employed since January 2023 and work with the BICOM® bioresonance method and osteopathy in my practice.

Patients often come to me with very unspecific symptoms that have not yet led to a diagnosis, or they come to me already with several diagnoses that do not fully explain their symptoms. | have found that many of my patients suffer from mast cell activation syndrome (MCAS). Today | would like to explain how | came up with this diagnosis and why we as BICOM® bioresonance therapists in particular should take a closer look at this topic.

First of all, | will classify MCAS as a mast cell disorder. | would like to say a few words about histamine and mast cells. In the further course of my presentation, | will explain the clinical picture, diagnosis and therapy.

We sometimes unintentionally stigmatize our patients through our own conscience or ignorance. It is therefore our goal as therapists to broaden our diagnostic perspective and to continually educate ourselves so as not to do our patients an injustice. How often do patients in our practice complain that they feel alone with their complaints because no one can help them, or because there is no suitable diagnosis for their complaints. In order to expand our knowledge of MCAS, | would like to take a closer look at this topic for you.

MCAS – Classification within the mast cell diseases

There are many mast cell diseases that occur with varying frequency. What they all have in common is that those affected exhibit inappropriate mast cell activation (MCA). In systemic and cutaneous mastocytosis with its subtypes, there is also an inappropriate proliferation of mast cells in addition to MCA. Other mast cell diseases such as urticaria and angioedema as well as allergies and anaphylaxis are also known.

However, there are also lesser-known mast cell diseases that were previously hidden. One of these is MCAS. MCAS is a systemic disease and has only been described since the early 2000s. It can cause many different symptoms, which are also triggered by an overactivity of mast cells. MCAS is still not a clearly defined clinical picture, but a syndrome. It is one of the systemic mast cell activation disorders (MCAD) (see diagram). A distinction is made between primary, secondary and idiopathic MCAS.

Depending on the source, scientists estimate that 5 to 17% of the population suffer from MCAD. Women are affected more frequently than men. The lack of a clear diagnosis makes it impossible to define an exact figure, as there is no classification using ICD codes. There have only been a few studies on MCAS so far, which means that we will certainly gain new insights into this topic in the near future.

In contrast to mastocytosis, in MCAS we generally find no change in the mast cells themselves, but highly sensitive, hyperagile mast cells. Many everyday stimuli such as heat, cold or stress can lead to a non-targeted, almost chaotic release of histamine and other mediators from the mast cells.

Histamine acts primarily via receptors. In order to trigger a reaction, it must dock onto a body cell with a histamine receptor. Four different receptor types are described, which mediate different effects:

H1 receptors have an effect on, among other things:

• White blood cells: boosting the immune response

• Intestine: contraction of the intestinal muscles

• Nerves: pain and itching

H2 receptors have an effect on, among other things:

• Heart: increase in heart rate

• Skeletal muscles: Increase in muscle tension

• Gastric mucosa: Secretion of acidic gastric juice

H3 receptors have an effect on, among other things:

• Central nervous system: regulation of hunger and thirst

• Peripheral nervous system: increased alertness and concentration

H4 receptors have an effect on, among other things:

• Immune system: increase in the cellular immune defense

• Skin cells: increased inflammation

Histamine has a very extensive influence on various cell functions and can have an effect on every organ. Histamine comes from three different sources in our body:

1. Mast cell histamine, which is produced in the mast cells (and similar cells)
2. Brain histamine, which is produced in special nerve cells and mast cells in the
hypothalamus
3. Dietary histamine, which we take in with our food

Histamine from our food is also associated with histamine intolerance in the case of complaints. A lack of diamine oxidase (DAO), which breaks down histamine from food, can lead to symptoms such as diarrhea, flatulence or cramps. Although the symptoms may be similar to those of MCAS, there is no link to histamine intolerance. Actual histamine intolerance is extremely rare to diagnose.

Mast cells

Mast cells are the most important producers of histamine. They are among the oldest immune cells. Mast cells are rarely found in the blood, they are mainly located in the tissue, near blood vessels and nerves. Especially in:

• Skin

• Mucous membranes

• Lungs and bronchi

• Brain

• Stomach and intestinal tract

• Ovaries

• Uterus

Mast cells release over 1600 messenger substances during an immunological defense reaction, including

• Histamine

• Heparin

• Tryptase

• Serotonin

• ECP

• Leukotrienes

These messenger substances cause all kinds of symptoms in MCA. Histamine is the biologically strongest messenger substance. The excessive release from mast cells plays a major role in all mast cell diseases, to which we assign MCAS. MCA leads to multisystem complaints, resulting in a variety of symptoms that can occur in the most diverse body systems.
Let us now look at the clinical picture of MCAS.

Clinical picture
Overactive mast cells (as in MCAS) can trigger a variety of symptoms, which are usually very unspecific. They can affect the entire organism or sometimes only occur in certain organs, such as the central nervous system. In addition, the symptoms vary greatly in their intensity and timing. For example, sufferers may be symptom-free for months and then suddenly experience a variety of symptoms in the form of seizures. These symptoms appear to be unrelated and can be very similar to those of systemic mastocytosis. In some patients, acute symptoms dominate, which occur shortly after confrontation with a trigger and also subside quickly. In others, the course is more chronic, so that a single trigger contributes only imperceptibly to the permanent level of symptoms. The severity of the disease also varies greatly. However, MCAS is not life-limiting in any case. Many of the symptoms listed are non-specific and other possible causes could also be considered. A good differential diagnosis is therefore very important.

The most common symptoms of MCAS:

• Tiredness (fatigue) 83%

• Fibromyalgia-like pain 75%

• Sudden brief unconsciousness / drowsiness / dizziness / near-unconsciousness 71%

• Headache 63%

• Itching 63%

• Tingling / paresthesia 58%

• Nausea / vomiting 57%

• Muscle tremors / chills 56%

• Swelling / edema 56%

• Eye irritation 53%

• Breathlessness / shortness of breath / shortness of breath (dyspnea) 53%

• Acid regurgitation / gastroesophageal reflux 50%

• Impairment of mental performance (cognitive dysfunction) / memory disorders / concentration disorders / learning disorders 49%

• Pathological skin changes (efflorescence) / spots / nodules / blisters / blisters / pustules / wheals / pimples / cysts / calluses 49%

• Abdominal pain 48%

• Palpitations / heart palpitations / cardiac arrhythmia 47%

• Sweating 47%

• Allergies 40%

• Fever 40%

• Pain in the upper body / chest 40%

• Tendency to bleed / bruising / nosebleeds 39%

• Diarrhea (diarrhea) and constipation (alternating) 36%

• Swallowing disorders (proximal dysphagia) 35%

• Insomnia (sleeplessness) 35%

• Blushing 31%

• Visual disturbances 30%

• Enlarged lymph nodes / inflammation of the glands (adenitis, adenopathy) 28%

• Diarrhea 27%

• Susceptibility to infection 27%

• Impaired wound healing / excessive scarring 23%

• Frontal sinusitis / sinusitis 17%

• Cough 16%

• Anxiety / panic attacks 16%

A complete list can be found, for example, on the mastzellenhilfe.de website. It should be mentioned that women with MCAS may experience menstrual cramps, menstrual cycle disorders and endometriosis. It has been observed that patients with MCAS are often sensitive to minor environmental influences that tend to go unnoticed by healthy people.

Diagnostics
When taking a medical history, we should be particularly attentive if several of the symptoms already described are mentioned. | always ask about complaints that have occurred in the past or only occasionally. It is also common for patients to have several of the diagnoses mentioned, such as

• Allergy

• Generalized anxiety disorder

• Exhaustion syndrome

• Depression

• Difficulty falling asleep and staying asleep

• Fibromyalgia

• Irritable bowel syndrome

• Interstitial cystitis

Many patients who present with unusual symptoms also come for osteopathic treatment. Due to the interdisciplinary approach in our practice, it is not only musculoskeletal complaints that are of great importance to me. Patients, whereby | suspected MCAS, described among other things, very changeable complaints and a variety of non-specific symptoms. In addition, these patients were very sensitive to external stimuli such as pressure and tensile forces during osteopathic treatment.

If I suspect MCAS, during the general anamnesis in my practice, | can use the questionnaire from the University of Bonn for clinical diagnostics. This can be downloaded in German or English (link in the bibliography). It asks about symptoms and their intensity. It should be said that all complaints, even those that are only slightly stressful, rarely occur or are not related to the main complaints, must all be noted. Questions for a respective medical specialist are marked with a frame, as these are not initially relevant for us. If the patient is however aware of them, they can be filled in. For the evaluation, the numerical values noted to the right of the respective boxes are added together. If the total value is above 8 but below 14 points, a pathological activation of mast cells is suspected as the cause of the complaint. If the total value is 14 or more points, the diagnosis of MCAS can be considered clinically confirmed.

For the further diagnostic path, it is always necessary to consider what the goal of the respective patient is. If we want to rule out a serious mast cell disease, further diagnostic methods such as blood and urine tests, gastroscopy and colonoscopy, as well as tissue samples/biopsies are available.

The following markers are determined in the laboratory:

• Tryptase in serum

• Leukotrienes in 24-hour urine collection

• Chromogranin A in serum

• ECPinserum

It should be noted that in MCAS, none of the above-mentioned markers are often conspicuous in the blood, but the histamine markers are usually significantly elevated. A persistently high increase in tryptase in the serum raises the suspicion of mastocytosis. For further diagnostic clarification, these patients should visit a special outpatient clinic or a mastocytosis center. In our experience, referral to any specialist usually does not lead to the desired diagnosis. Dr. Nina Kredding’s self-help group mastzellenhilfe.de explains exactly what the path to diagnosis can look like. I can also recommend the book “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic lliness and Medical Complexity” to learn more about this topic.

In practice, it has become apparent that the diagnostic pathway described above is very difficult in cases of suspected MCAS and, as MCAS is not a curable disease, is not necessarily required. if patients have relief with appropriate measures, | do not consider a confirmed diagnosis to be absolutely necessary for the initiation of treatment. If other illnesses can be safely ruled out as the cause, the most important thing for me is to start with a targeted therapy. How we as naturopaths proceed in the respective individual case with regard to the initiation of medical diagnostics must be weighed up, as with any other illness, also in order to protect ourselves legally.

The four types of histaminosis Kira Kaufmann describes four different types of histaminosis in her book “Der Histamin-Irrtum” {The histamine misconception). MCAS patients can thus be treated more specifically based on their symptoms. It also makes sense to refer the patient to the relevant specialist according to their type.

• The intestinal-lung type (complaints of the skin, lungs or gastrointestinal tract)

• The hormone type (functional disorders of the thyroid gland, sex organs or adrenal glands)

• The histadelia type (anxiety and panic, sleep disorders, restlessness, depression and
  psychosis, concentration disorders, ADD/ADHD or eating disorders)

• The MCAD type (has some of each of the other three types, and therefore all the diagnostic and therapeutic advice for the above types also applies)

In summary, it can be said that a variety of symptoms can occur. So that our patients can get an idea of which symptoms can occur with MCAS and to better understand the disease, we usually provide a list of the self-help group (mastzellenhilfe.de) for the patients. By accepting it, affected patients can recognize themselves and use this knowledge to adapt their conditions. As therapists, we can point our patients in the right direction and provide advice. We have had many cases in our practice and are convinced that MCAS is a very common condition that is simply rarely diagnosed. Many of our colleagues and doctors are not sufficiently aware of MCAS. This is particularly distressing for those affected, who often feel alone with their symptoms and are often pigeonholed as psychosocial.

Therapy

MCAS cannot be cured, but it can be treated. There are various treatment options available to us. These include recommendations that we give to our patients. It should be noted that we have to take a holistic and individual approach to each patient and adapt the recommendations as necessary. There are also conventional medicines that can be important and useful in acute cases.

There are also naturopathic preparations, recommendations on triggers, the appropriate diet, lifestyle and the BICOM® bioresonance method.

1. Drug therapy / nutritional supplements

• Antihistamines (H1, H2, H3 or H4 blockers)

• Cortisone

• Omalizumab (Xolair)

• Melatonin

• Curcuma

• Vitamin C (as an infusion or via the oral mucosa)

• Vitamin D as required

• Quercetin

• CBDoail

• Zinc

• Palmitoylethanolamide (PEA) (for pain in the musculoskeletal system)

• S-adenosyl-methionone (SAMe) (not when taking psychotropic drugs of the SSRI, SNRI or triptan type)

2. Avoid triggers

Chemical triggers

Heavy metal exposure Numerous drugs are incompatible with MCAD: antibiotics, painkillers, local anesthetics, anesthetics, sedatives, expectorants, muscle relaxants, as well as active ingredients in all X-ray contrast agents.

Well-known examples: acetylcysteine, acetylsalicylic acid, barbiturates, codeine, diazepam, diclofenac, metamizole, metoclopramide, nitroglycerin, opiates, prilocaine, rifampicin. Excipients that may trigger intolerance reactions: fillers, tableting agents, colorants, coating agents, preservatives, solvents, flavorings, fragrances, sweeteners, surfactants, etc.

This list is not exhaustive.

Psychological triggers

Stress, nervous excitement, psychological dispositions and illnesses

Physical triggers

Physical stress, mechanical effects, temperature, radiation, potentially pathogenic
vibrations

Physical triggers

Allergies, autoimmune diseases, hormonal disorders, adrenal insufficiency, circadian rhythms (day-night rhythm) imbalance, mediator degradation disorders, mitochondrial dysfunction, nitrosative/oxidative stress, pathogenic organisms, unstable cervical spine, dysfunctions in the area of the spinal dura, chronic inflammation in the dental and jaw area, lack of sleep.

In summary, it can be said that countless triggers can have an unfavorable effect on mast cell activity. Each person affected must find out for themselves which triggers need to be avoided or reduced and to what extent. As therapists, we can advise and test using the biotensor!

3. Adjust the diet

Avoid histamine liberators (e.g. coffee, walnuts, cocoa and especially alcohol!). It is important to find your personal measure when consuming histamine-rich foods (as histamine-rich foods can stimulate the mast cells to release even more histamine via the histamine receptors). Avoid “fake” food/processed products, avoid additives

4. BICOM® bioresonance therapy

In his 2009 book “Bioresonance – the future and opportunity of medicine”, Dr. Gerhard L. Rummel describes mast cells as follows: “It can be assumed that treatment with bioresonance brings about a change in the information of the mast cells…”. We have also been able to confirm this in practice, as patients have reported relief of symptoms after appropriate regulation and reduction of stress with the BICOM® bioresonance method.

We can test and treat the triggers already mentioned using the BICOM?® bioresonance method. The main focus in our practice is always based on the general rules for treatment: intestinal structure, detoxification, releasing blockages (also osteopathically), regulating the immune system, eliminating pathogens, basic allergens, vegetative balance. This scheme is well known to all therapists.

BICOM® bioresonance therapy can also be used to treat the often high level of symptomatic suffering. Examples include hot flushes or menstrual cramps (see corresponding therapy programs). We can also intervene well in the case of acute reactions (e.g. hives or swelling (3015.0), allergies (970.5,984.0).

General program recommendations for MCAS:

• 31240 Cell regeneration, acute

• 3125.0 Cell regeneration, chronic

• 432.1/827.4/281.4 Autoregulation disturbed

• 3053.0 Regulate the immune system

• 3089.0 Mucosal regulation

• 842.0/922.6 Improve the regulation of histamine

• 560.1/445.0/822.2/422.4/921.2 Intestinal treatment

• 3013.0 /3028.0/562.0 Improve intestinal flora

• 3036.0 Detoxification regulation

• 999.2 Detoxification of the mucous membranes

• 922.2 /923.2 Acute / chronic tissue process

| use the substance complexes in every therapy. These can be adapted and incorporated into the treatment depending on the symptoms. As patients with MCAS can react particularly sensitively, we do not recommend using the DMI magnetic field function.

In our practice, we offer multidimensional treatment. Patients who have complaints in the musculoskeletal system, for example, are therefore treated osteopathically. | have also had very good success with patients with adhesions in the pelvic region. Regardless of which therapy we offer our MCAS patients, it is important for us to convey to the patients that we are not curing the MCAS, but that we can minimize the symptoms through the therapy. In many cases, this leads to long-term support for patients.

Conclusion

For us as BICOM® bioresonance therapists, it is always important to examine and treat patients in the best possible way. As we can assume that many of our patients suffer from MCAS, it is all the more important that we continue to address this issue.

As MCAS is a disease that cannot be cured but can be treated, the BICOM® bioresonance method is the best way for us to support our patients. The basic therapy and a treatment adapted to the symptoms of the respective patient always play an important role. Supportive measures such as nutritional supplements are also useful. We must offer our patients with MCAS groundbreaking therapeutic support so that they know how to deal with this disease and how to make their lives
more comfortable again.

Finally, | would like to thank you for allowing me to give this lecture. | would especially like to thank my mother Brigitte Jonczyk, without whom I would never have come across the BICOM® bioresonance method and with whom 1 can now put so much good into practice as a team.

Thank you for your attention!

• Literature
  Questionnaire / Diagnostic checklist Uni-Bonn [30.11.2023] https://www.humangenetics.uni-bonn.de/de/forschung/forschungsprojekte-export/forschungsprojekte/mastzellerkrankungen

• Kauffmann K., Kaufmann S. (2022) The histamine fallacy – away from radical diets and prohibition lists – the formula for a healthy life with histamine

• Lawrence B. Afrin M.D. (2016) Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic lliness and Medical Complexity

• Mastcellactivation.info [30.11.2023] https://www.mastzellaktivierung.info/de/einleitung_kurzfassung.html#qv

• Mastzellenhilfe.de Dr. Nina Kredding [30.11.2023] https://www.mastzellenhilfe.de/

• MCAS hope e.V. [30.11.2023] https://mcas-hope.de/

• NDR Report MCAS (2022) [30.11.2023] https://www.ndr.de/ratgeber/gesundheit/MCAS-

• Mastzellaktivierungssyndrom-erkennen-und-behandeln, mastzellaktivierungssyn-drom100.html

• Rummel G. L. (2009) Bioresonance – the future and opportunity of medicine Studies on MCAS: 1 Moldering G., Homann J., Brettner S., Raithel M., Frieling T. (2014) Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options [30.11.2023] https://pubmed.ncbi.nim.nih.gov/24801454/ 2 Valent P., Akin C., Arock M., Brackow K., Butterfiled JH., Carter MC., Castells M., Escribano L., Hartmann K., Liebermann K., Nedoszytko B., Orfao A., Schwartz LB., Sotar K., Sperr WR., Triggiani M., Valenta R., Horny HP., Metcalfe DD. (2011) Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal [30.11.2023] https://pub-med.ncbi.nlm.nih.gov/22041891/

The author will be happy to answer any further questions:
[email protected]