Mast cell activation syndrome is there a link?

[LAJ12345]

Hubby has always had serious allergic reactions from a child and had to have steroid injections in summer as a teen. Is it related? This week the dog has come down with a lump that has tested positive for mast cell tumour. My son also has chronic hayfever and panic attack and anxiety.

what is happening in our house??

Photo-dog after being told he is on a keto diet at 60% calories😞

Neuropsychiatric Manifestations of Mast Cell Activation Syndrome and Response to Mast-Cell-Directed Treatment: A Case Series

pubmed.ncbi.nlm.nih.gov/380....

“ Other psychiatric disorders included attention-deficit hyperactivity disorder, obsessive compulsive disorder, phobias, and bipolar disorder. All eight patients were subsequently diagnosed with mast cell activation syndrome; six had comorbid autonomic disorders, the most common being postural orthostatic tachycardia syndrome; ”

Lots of PD overlap symptoms.

Mast Cells in Neurodegenerative Disease

“Here, we discuss the roles of mast cells in neuroinflammation and neurodegeneration with a focus on development and progression of four prominent neurodegenerative diseases: Alzheimer’s Disease, Parkinson’s Disease, Amyotrophic Lateral Sclerosis, and Huntington’s Disease.”

ncbi.nlm.nih.gov/pmc/articl...

Thiamine link

“Histamine levels in thiamine deficient rats were significantly lower in the hippocampus, amygdala, olfactory bulb, thalamus and pons-medulla oblongata than those of normal and pair-fed groups. In the case of the hypothalamus, thiamine deficiency produced a significant increase in histamine levels. These changes observed in the thiamine deficient group were reversed to the normal levels by supplying the normal diet. These data present a new finding that thiamine deficiency affects the central histaminergic neuron system as well as other mono-aminergic systems.”

sciencedirect.com/science/a....

celiac.com/forums/topic/156...

Restless legs syndrome is associated with mast cell activation syndrome

pubmed.ncbi.nlm.nih.gov/319...

What vitamin deficiency causes mast cell activation?

“Vitamin D binds to its receptor, called the vitamin D receptor (VDR), which is present in almost all immune system cells. The literature suggests that a vitamin D deficiency can activate MCs, and vitamin D is necessary for MC stabilization.”

“What is the root cause of MCAS?

In our clinical experience, mould exposure or sick building syndrome is at the root of 90% of MCAS cases.”

Do I have mast cell activation syndrome?

londonclinicofnutrition.co.....

“What are the symptoms of mast cell activation syndrome?

Your mast cells are found all over your body, which means they can create symptoms everywhere. The most noticeable symptoms tend to occur in the skin, gastrointestinal tract, nervous system and heart.

The symptoms also exist on a spectrum. Anaphylaxis is on the end of the scale, but milder symptoms can include [4]:

Itching and flushing

Hives

Watering eyes

Runny nose

Sneezing

Swollen tongue or lips

Shortness of breath

Wheezing

Low blood pressure

Rapid heart rate

Diarrhoea

Nausea

Abdominal cramps

Headaches

Fatigue

Brain fog is a tell-tale symptom too. This can leave you finding it difficult to concentrate, or even give you problems with your memory or word recall. Mood disorders—such as depression, irritability and anxiety—can appear as part as MCAS too.

Unlike an allergic response, these symptoms don’t appear in isolated attacks [5]. They tend to be chronic, which can become frustrating and even debilitating.

What causes mast cell activation syndrome?

There’s no one cause of mast cell activation syndrome. It’s the result of accumulated threats to your body.

We know that 74% of people with MCAS have one first-degree relative who also suffers from it, so there may be a genetic susceptibility [6]. We also know that people who are poor methylators are more prone to developing MCAS—likely because methylation is one of the body’s primary ways of getting rid of histamine [7].

MCAS has also been associated with obesity, IBS, depression and diabetes [8]. We don’t yet know if MCAS plays a role in the development of these conditions, or if it’s the other way around, but we do know they’re connected.

But even if you have a genetic susceptibility, a methylation issue or a pre-existing condition, something has to trigger MCAS. These triggers can include:

Insect bites

Food sensitivities

Antibiotics

Painkillers

Rapid temperature change

Pain

Chronic tiredness

Infection

Hormonal changes

Chemical exposure

Emotional distress

But that’s still not the whole story. A trigger can only light the fuse of a fully loaded canon—which means that to develop MCAS, your mast cells have to already be irritated by something.

But what could be stirring up your mast cells without you realising it?

There are three common culprits:

Heavy metals. Metals such as aluminium and mercury destabilise mast cells [9].

Gut dysbiosis. More than 70% of your immune system is clustered around you gut, which means an imbalance of bacteria can activate mast cells [10].

Mycotoxins. Chronic exposure to environmental pathogens activates mast cells. This one is huge. In our clinical experience, mould exposure or sick building syndrome is at the root of 90% of MCAS cases.”

“What’s the best diet for mast cell activation syndrome?

A common approach to MCAS is to follow a low-histamine diet. This involves reducing or eliminating both foods that contain histamine and foods that stimulate histamine release.

Foods that are high in histamine include:

Fermented dairy: cheese, yoghurt, kefir

Fermented vegetables: kimchi, sauerkraut

Pickles

Kombucha

Cured meats

Alcohol: wine, beer, champagne

Vegetables: tomatoes, aubergine, spinach

Canned fish

Foods that are suspected to stimulate histamine release include:

Dairy

Seafood

Egg whites

Nuts

Cocoa

Some fruits: pineapple, bananas, oranges, limes, lemon, strawberries

Legumes

For some, this can bring great symptomatic relief. But it doesn’t work for everybody. This is because a low-histamine diet a) doesn’t entirely influence how much histamine your body makes b) doesn’t control how your body breaks down histamine and c) doesn’t tackle the other mediators that could be causing MCAS problems: tryptase, prostaglandins and leukotrienes.

For that reason, a standard anti-inflammatory diet that takes into account your sensitivities and intolerances is an alternative approach for MCAS. At its most basic level, this involves eating fresh, whole, nutrient-rich foods. Eating certain herbs and spices—such as peppermint, ginger, thyme and turmeric—can also help to stabilise mast cells [13].”

Lots of overlap here with what Laurie Mischley says makes things worse.

What’s the best mast cell activation syndrome treatment?

MCAS is a complex condition and requires a multi-pronged approach.

Conventional treatment centres around stopping the effects of the mast cell mediators. Commonly prescribed medications include:

Anti-histamines. As the name suggests, these block the effect of histamines.

Mast cell stabilisers. These stop mast cells from releasing mediators (i.e. they stop the cannons from firing).

Antileukotrienes. These block the effect of leukotrienes, another type of mast cell mediator.

These can bring symptomatic relief, but they don’t address what’s causing the mast cells to overreact in the first place. That means that once you stop taking the medications, symptoms can return.

The natural approach aims to restore the normal function of the mast cells. This involves addressing several areas:

Diet. As discussed, a low-histamine or anti-inflammatory diet can help to reduce the mediator load.

Stress. Corticotropin hormone, released when you’re under stress, destabilises mast cells. This means a stress-reduction practice is an essential part of tackling MCAS [14].

Sleep. Research suggests your mast cells have a sleep-wake cycle too [15]. By supporting your circadian rhythm, you can help to bring them back into balance.

Supplements. Certain nutrients, are natural mast cell stabilisers [16].

These can all help to calm mast cells but, to achieve true resolution of MCAS, you also need to tackle the root cause of your mast cell aggravation.”

“Your provider may suggest a histamine gentle diet that may improve symptoms. This diet reduces foods that are known to be higher in histamine. These include:

Avocado

Citrus

Dried Fruit

Tomatoes

Spinach

Canned or smoked fish

Aged/hard cheese

Alcohol

Eggs

Nuts

Cured meats

Chocolate

Leftovers (especially ones with meat)

Your provider may also suggest ways to prepare food that will not promote histamine, such as baking, boiling or air frying.

It is still not known if following a low histamine diet will help if you have MCAS. You may not feel better after taking these foods out of your diet.

We suggest you work with a dietitian to find safe foods to eat as part of a balanced diet.

A variety of foods such as meats, fish, eggs, vegetables, fruits, grains, dairy, and oils.

Enough calories to support a healthy weight.

Limited added sugar, trans fat, saturated fat, and salt.

[eschneid]

That's a mouthful, but now I'm afraid to eat, drink, breathe. Too much info for me... Sweet dog, but I understand why he's down.

[LindaP50]

Sweet picture of your dog.

MCAS is new to me. A lot of information to absorb.

[MarionP]

Fascinating. For the moment sounds like immediate action steps for at least some relief while looking into things that take more looking into could be Zyrtec. Have had "the atopic triad" my entire life and the only thing that has ever made any difference has been antihistamines and drastically curtailing sugar and aspartame.

[LAJ12345 in reply to MarionP]

Yes, wondering if I should try him on fexofenidine which is the strongest one my son takes.

He says he doesn’t have the allergies he had as a kid, but what if they turn into PD later in life? I can’t see how after being so allergic he suddenly isn’t any more.

The theory PD starts in the nose might be true, then the allergy reaction spreads up to the brain?

Cetirizine didn’t work for my son very well- fexofenadine is the most effective

I wonder if Laurie mischley has investigated if there is sometimes a childhood allergy connection.

Have you tried eliminating histamine and oxalates foods? Problem is the “healthy diet” seems full of them.

Stress is on the list of things that aggravate mast cell and stress is a pd trigger I think.

apdaparkinson.org/uploads/f...

[LAJ12345 in reply to MarionP]

This is interesting

sa1s3.patientpop.com/assets...

[chartist]

Melatonin inhibits mast cell activation and melatonin lotion may be better at it than oral melatonin because it has longer staying power. Melatonin levels in humans and animals decline with age, suggesting a worsening of disease (MCAS) activity with age. Here is a link to an animal study illustrating that melatonin suppresses mast cell activation :

journals.plos.org/plospatho...

Here is a relevant quote from the link :

' Further study identified that the mast cells were the primary targets of melatonin action, i.e., melatonin suppresses the mast cell activation caused by H1N1 infection. The molecular mechanisms involved melatonin down-regulation of gene expression for the HIF-1 pathway and inhibition of proinflammatory cytokine release from mast cells; this resulted in a reduction in the migration and activation of the macrophages and neutrophils in the lung tissue. '

Quercetin is likely to be additive to the melatonin. Here is a link discussing how quercetin helps reduce mast cell activation :

fasciainstitute.org/quercet....

Here is a relevant quote from the article :

' Quercetin has been shown to stabilize mast cells, preventing excessive activation and the release of these inflammatory compounds.

Lowering Tryptase Levels: Tryptase is an enzyme predominantly released by mast cells during allergic and inflammatory reactions. Elevated levels of tryptase can contribute to tissue breakdown by promoting inflammation and tissue remodeling. Quercetin inhibits tryptase activity, thereby helping to lower tryptase levels and mitigate its detrimental effects on fascia, muscle, and connective tissue integrity. '

Both supplements are very likely to have many other health benefits and work well together with both having very good safety profiles.

Art

[LAJ12345 in reply to chartist]

Thanks, very interesting. He does take melatonin. Weirdly I just bought quercetin as I thought it might help my son as his hayfever is so bad. I will add that in as my next trial. Currently back to the high dha oil to see if that helps again so will add quercetin next week don’t want to change too much at once.

[LAJ12345]

and on another note to do with dog mast cell activation I saw this

barkandwhiskers.com/vaccine...

Where it suggests getting a titre test done for eg parvovirus so if enough antibodies remain from early vaccinations the dog shouldn’t need more. They say the dog vaccine can make mast cell cancers flare up.

Wondering if the same testing is available for humans to avoid having repeated vaccines? I assume the same would apply. And if not would having a low histamine diet and a course of quercetin help ward off any reaction if taken before any vaccines?

here’s a paper

journals.sagepub.com/doi/10...

ncbi.nlm.nih.gov/pmc/articl...

[ewebhook]

Thanks for your or your interesting info. Mast reactions are a new thing to us too in the last year or so.

I found info on Mastcell360.com very helpful too.

DAO enzyme is found in "Ancestral Supplements Grass Fed Beef Kidney Supplement, 3000mg, DAO Enzyme Supplement, Kidney Support for Urinary and Histamine Health.."

For my husband, 1 single DAO capsule is very helpful to stop a coughing reaction to some food that is just sitting on the table, like vinegar and pepper.

He is on a low histamine diet now which helps to minimize his overflowing histamine bucket..

Will add quercitin and melatonin again.

I suspect possible leaky gut and mold sensitivities, so will be starting an 8 week round of Butyrates from BodyBio with a binder in the near future.

[LAJ12345 in reply to ewebhook]

Interesting