Joint Pain and Inflammation with Mast Cell Activation Disease (MCAD)

Everyone deals with joint inflammation at some point and most certainly it is fairly common knowledge that heat causes it to increase and cold can cause it to decrease, or stabilize.

So many times it just happens. All of a sudden a joint doesn’t work as it should. Yesterday it was my left hip. Sudden pain, can’t really move my leg while trying to pick up sour cherries off the ground. Usually this behaviour is equivalent to a deadlift or squat one would perform in the gym and it was very likely directly and indirectly related to “leg day” the previous Saturday. Third day following is usually the day when the muscles are sore and tight. Inflammation in the joint is the cause, but it is not because I have injured myself in this case.

It is just what happens to me and something I have to be careful of. It can spring up in any joint any time. Last time it was my right knee. But I am careful to monitor my body and especially my joints as I follow my post workout rest routine. And although this can occur to anyone; it is much more common in my body and those like me with Mast Cell Activation Disease (MCAD).

Irritation of some sort; heat alone or in concert with irritation or injury cause inflammation. Exercise causes inflammation and is one reason why we need recovery.  Cardio work with repetitive motion is an obvious cause we deal with. The building of muscle through strength training intentionally injures muscle so it is rebuilt stronger. Joints involved in every case do experience overheating and irritation during exercise and daily life.

Mostly it is unnoticeable until there is an injury or soreness, pain. For me it can just spring up anywhere. What is fine one day can suddenly be painful, with or without getting swollen, then be gone again shortly afterwards. There is no doubt that the running of my dogs and the exercise I do in the gym pushes this on me. But there are other significant factors in my case.

My understanding of the uniqueness that is me has enabled me to become fit through regular physical exercise now despite the fact that it has disabled me repeatedly in my past. Unlike most people, my mast cells are anything but normal. Mast cells are the cells throughout the body that detect injury and respond to repair it; referred to as the innate immune system.

If you bang your knee, the bruise is triggered by mast cells. If you cut yourself, the pink that begins to show is from mast cells responding, they gather at the site of the injury and dump granules filled with chemicals that signal the immune system to repair the damage. This is the inflammatory process. In my case those mast cells over react to everything that stimulates this process.

Normal activities, even non strenuous activity can and does stimulate them to respond. They over react in my body and degranulation is excessive causing many things to occur. Some part of this reaction impact systems throughout my body through Histamine receptors of a variety of types. H1 receptors in skin and cardiovascular systems, H2 receptors in the GI tract, H3 receptors in the Central Nervous System and H4 receptors in Mast Cells, which unfortunately act to stimulate and amplify the over reaction.

In addition to Histamine there are a number of other chemicals involved in the degranulation that impact a variety of structures and functions. This is not well understood for the most part, but it does lead to what has been referred to as food sensitivities.  However; they are not sensitivities! They are allergic reactions stimulating degranulation and the immune system inflammatory response, without the mediator, Immunoglobulin E, which most Doctors consider necessary. They are wrong!

Things I am allergic to; both IgE allergies like grass that is currently the culprit, and non-IgE allergies like cherries and nightshades plants, cause a spike in the reaction of my mast cells which results in a highly amplified level of degranulation and a cascade of responses to occur throughout my body through all types of Histamine receptors. This has meant many unusual and unexplained symptoms I have mentioned to my doctor previously, but have generally been ignored until this past year.

Now that these allergies are under some control thanks to my newfound awareness; it has enabled me to see the result of combining them with the excess body heat I create during exercise. Not that I have intentionally done so, but the grass grows and I cannot stop breathing the pollen as of yet; although I do have masks and can filter some of it as it is creating a massive one-two punch in the effects of my mast cell over activation and degranulation.

Histamine release and mast cell degranulation occur with increases in body heat in everyone. But once again this is massively amplified in my body. Exercise causes it and I have to be careful to manage it. I control how much I exercise, how long, how much weight I push, how long I run, even how big the muscles are that are doing the work all influence how much heat I produce and the degree to which my mast cells degranulate. I have begun to understand this process and how it impacts me.

Now the combination of the two, excess heat and an allergic reaction, produces even more spectacular changes that most do not have the pleasure of experiencing.  In my case it causes sudden and unexpected joint pain for one. I can’t work through it at all. This will, and certainly has in the past, result in injury and permanent failure. No, I don’t push through it. I manage it; I stop working and often utilize one of the many ice packs at my disposal.

And if I do manage it and wait and rest, it will disappear as quick as it came about and I will be back in action once again. If I push through it; the problem gets worse and I break!

But it is the combination of my over active mast cells, my allergic response of those cells to something I have breathed in or eaten (or absorbed) and the increased degranulation and inflammation that results from exercise that combine to throw my body over the edge without what would seem to be any corresponding event to cause the sudden pain and mobility issue I might experience in one of my joints, when there were no signs previously.

Food I eat and the poison I don’t!

Here is my diet, mostly in point form below. Please note that this is a document in progress!

One cautionary note I want to share about making changes in one’s own diet is that by removing foods that you have become desensitized to and currently tolerate, you may in fact cause them to become resensitized so foods that used to bother you only a little or not at all in small quantities may cause a severe reaction when reintroduced.

I strongly suggest caution when removing food you may want to continue to eat and suggest you remove suspected minor irritants after major irritants have been removed, or that you remove something only for a short period initially. This will provide a cleaner slate to measure the effect of removing other food that may not be a major problem.

Most of my diet takes this into account. When I first learned of my Mast Cell Activation Disease, anti nutrients, my nickel allergy, histamine, etc.; I wanted to remove all bad things on the many lists; however if one looks at Oxalates, salicylates, Phytates, Lectins, Saponins… (more on these to come in future posts) one won’t be left with much to eat and many things you could eat you might no longer be able to eat if you remove them and resensitize to them.

It is very important to continue to make choices that provide healthy nutrition and not just eliminate things you might be afraid of. This is a common problem driven by fear and it can lead to significant deterioration in overall health, even beyond what is currently a problem.

Total elimination diets and reintroduction of foods may be necessary in some cases, but my opinion remains that one should try to structure removal of foods in a worst first method. This does not work for everyone.

Much of the info on Histamine diet and foods I refer to and my guidance when it comes to histamine in my diet came from http://mastattack.org.

However I also combine the approach I have maintained for the care of my dogs and myself for many years that stresses providing good nutrition even when sick.  I just did not know the difference between food that is generally good for you and intolerance to certain nutrients that modifies that condition. I also found this approach espoused very well on http://healinghistamine.com.

In some cases a complete cleans may be necessary, but I would not choose to do so unless it was.

This should only be determined with the help of a health care professional, Medical Doctor, Naturopathic Doctor, etc. And my personal caution is that I would first need to determine if that health care professional had any knowledge of mast cell disorders, actual nutritional value, anti nutrients etc.

In Progress:

At the moment I have three categories of food that are a problem:

  1. Food that poisons me and causes an allergic reaction in me and influences every histamine system; Skin, GI, Cardiopulmonary, CNS, immune system – Everything. And I do not yet know exactly what it is that causes these reactions.
  2. High histamine since I produce a ton more than I need and everything that produces higher histamine levels causes my baseline symptoms to increase.
  3. Nickel allergy that requires me to reduce overall nickel intake.

Food I eat:
-Water
-Coffee

-Squash (butternut, acorn, zucchini)
-Rutebaga
-Celery
-Cabbage
-Cauliflower
-Brussels Sprouts
-Arugula
-Parsley
-Boc Choi
-Sweet Basil
-Onion
-Garlic

-Apples (have not tried all types yet and some are high in other anti nutrients)
-Pears
-Mango

-Eggs
-Beef
-Chicken (limit intake due to higher inflammatory properties)
-Turkey
-Whey Protein
-fresh caught fish (within 30 minutes, unlikely)

-Butter
-Fish oil
-Coconut oil
-Canola oil
-Safflower oil
-Sunflower seed oil
-Olive oil

-Peppercorns
-Cumin
-Tumeric
-Oregeno

-Dairy (not fermented, listed below)
-Butter
-Cereal cream
-Ice Cream
-Mozzarella cheese
-Almond Milk
-Coconut milk

-Maple Syrup
-Pure jams and jellies (of acceptable fruit)
-Apple butter

-Baking soda
-Baking powder

Food I eat, but limit because of high nickel levels:
-Almonds and Almond milk
-Hazelnuts
-Sunflower seeds
-Pine nuts
-Sesame seeds
-Oats (also high in phytates I control with soaking in acid and Rye flakes)
-Chic peas
-Parsnips
-Carrots
-Kale
-Broccoli
-Romaine lettuce
-Rice crackers

Food I limit frequency and amount due to high histamine, other anti nutrients:
-Dairy (fermented; small quantities only)
-Greek Yogurt (not sure anymore)
-Kefir (not sure anymore)
-Parmesan cheese (small quantities)
-Cheddar cheese (medium, very small quantities)
-Bread (sprouted whole grains; however still investigating)
-Strawberries (flavouring only, not sure)
-Raspberries (maybe not, not sure/flavouring only)
-Blueberries (flavouring only, not sure)
-Lemon juice in small quantities (exception to Citrus)
-Mayonnaise**
-Cesar Dressing**
-ranch dressing

Food I limit for other reasons:
-Coconut sugar (very little)
-Simple carbs

Stuff I don’t eat ever and that poisons me:
-Nightshades including tomatoes, potatoes, peppers (both sweet and spicy), egg plant
-Cherries (not a true nightshade but carry many of the same anti nutrients)
-Peanuts
-Artificial Dyes
-Asparagus
-Gum of Arachia
-Malt in bread etc
-Cane sugar (headaches in particular)
-Brazil Nuts
-Artificial Flavours
-Artificial sweeteners
-Alcohol
-Chocolate

Food I don’t eat due to high histamine levels:
-Beans
-Peas (green, sweet or sugar)
-Spinach
-Avocados
-Pumpkin
-Unpasteurized honey
-Chocolate
-Cocoa beans
-Cocoa
-Mushrooms
-Walnuts
-Pecans
-Pickled products
-Canned products
-Sauerkraut
-Dairy (fermented, some I love listed below)
-Aged chedder
-Sour cream
-Cottage cheese
-Cream cheese
-Soy
-Yeasts, yeast extract,
-Flavored gelatin
-Vinegar of any kind (minor amounts in some foods like Mayonnaise or even mustard I will eat)
-Citrus Fruits
-Berries, including cranberries, blueberries (not sure), blackberries, gooseberries, loganberries, raspberries**, strawberries**
-Stone fruits, including apricots, cherries (poison me), nectarines, peaches, plums, prunes; bananas, grapes, currants, dates, papayas, pineapples, raisins.
-Dried fruit of any kind
-Shellfish
-Processed meats
-Leftover meats (must be frozen for left overs)
-Dehydrated meat (eg. beef jerky)
-Raw egg white

Food I don’t eat due to High Nickel levels (I am simply trying to reduce overall nickel levels and eliminate only the worst offenders):
-Cashews
-Chocolate
-Spinach
-green, brown and white beans
-canned foods
-shellfish

Food I don’t Eat for other poisonous reasons:
-GMO anything (Corn, Canola, Soy, etc)

Food I am yet to test (may or may not be be high histamine or high in other anti nutrients):
-Other squash
-Tea
-Low histamine fruits I have not tried: Melons including Watermelon, Honeydo Melon and; fig, kiwi, passion fruit, rhubarb, starfruit, longans, lychees
-Fish (high histamine)
-Unfermented Cheese I have not tried; Mascarpone, ricotta, panir
-Pure, unbleached flour or grains (not high in histamine but Nickel or other anti nutrients may be an issue), but I have not tried many of these as of yet
-many forms of rice (not sure if brown or white is better, conflicting info to be resolved on Nickel and histamine, etc first
-pinto beans, white beans, navy beans, black eyed peas, black beans, lentils, split peas (all are higher in nickel and need to be regulated)
-plain gelatin,
-cream of tartar
-pasteurized honey (have not found any I would eat)
-Products that use baking powder for leavening like biscuits, soda bread, scones and muffins.
-Crackers without yeast are allowed, as are cereals if they don’t contain excluded ingredients.

Guidelines for Histamine:
1) Anything fermented should be avoided. Fermentation produces histamine as a side product. Some are only sensitive to yeast fermented products while some find that fermentation from any organism is triggering.
2) No preservatives and no dyes.
3) No leftovers and nothing overly ripe. This is one of the harder parts of this diet, but I find it very important. Fresh or frozen products seem okay. I have mixed success with thawing frozen meat, but lots of people do it successfully. The key is to not cook something, put it in the fridge and eat it three days later.
4) No canned products.
5) No pickled products.

* Allow small quantities
** Exception used in small quantities for flavour

Mast cells: Bad press or lack of circulation?

I wonder why we, people in general, don’t know much about mast cells?

For cells that exist throughout the entire body, including the brain, it comes as a bit of a surprise to me that the doctors I have sought for help, don’t really know anything about them.  I even asked my very well educated veterinarian about them and the only thing she really knows and the first thing that comes to her mind is mast cell tumors, which are relatively common in dogs.

The immunologist I saw in the course of my seeking help did not care anything about the mast cells that are the key to all of my health problems.  Some of these problems I know well and some of which I thought were just a normal part of everyone’s life and some others I didn’t even know of.  For example, despite not being allergic to peanuts or tomatoes; they can actually cause anaphylaxis, anaphylactic shock and even lead to death if not treated quickly, despite a negative result on standard allergy tests.

Mast cells are the key immune cells that reside throughout the body; in all tissues of the body. They are the sentries on duty; their sole purpose to defend our bodies from any invader and to signal the response team to go to work and fight off any evil doer! They only exist in the blood stream for short periods of time as they travel from the bone marrow, where they are grown along with all of the blood cells to their destination in the lungs, skin, GI tract, CNS, etc.

Unlike the blood cells however; which remain in circulation ready to respond to the call of duty and speed to their destination to fight any invader or protect the body from invaders in times of trauma, mast cells move out of the blood stream and into the tissues of the body, ready to defend us.

Mast cells exist in our skin, in our intestines, lungs and even our brain. Any place on us an invader can enter, or something can hurt us, they sit quietly waiting. Their life span is like that of most blood cells so we are constantly in need of making them and replacing those that die and we have mechanisms in place to regulate them, grow them and clean up after them when they die.

The spleen, once thought to be a vestigal organ, not used for anything (a perfect example of the arrogance we human beings have and a perfect example of why mast cells remain virtually unknown), cleans up all dead blood cells and all dead mast cells as well.  It is a very important organ when it comes to blood cells and mast cells.

So if the mast cells are so critical to our immune defense, why do we know so little?

The neurologist I sought help from due to ringing in my ears and itching and burning in my fingers and cognitive dysfunction, memory loss, etc, said to me: “9 times out of 10 we don’t know what causes itching or ringing in the ears!” REALLY? Unbelievable that he could be so ignorant of such a key cell. Many of my neurological symptoms I have experienced most recently and throughout my life are directly related to the mast cells in my central nervous system (CNS).

Mood swings, manic episodes, anxiety, panic attacks, memory loss, loss of attention span and ability to focus, the list of real deficits is long. Neural degeneration is what I feared most. Glad someone else could help me eliminate this possibility and help explain the brain fog and cognitive loss of myself and many people I have since met, I am sure. Maybe left untreated it actually becomes some form of neurologic degeneration and maybe dementia. For sure we don’t know what causes many of the neurologic diseases we see.

My cardiologist sees my endurance and cardiopulmonary system as fit and healthy, but cannot explain the fact that my heart rate and blood pressure do not recover after exercise like normal individuals. I can easily explain this now yet he shrugged his shoulders and ignored what he did not know. Unbelievable! I will explain this in another post when I go into some detail on exercise and how heat changes me and my mast cells.

My gastroenterologist was no better. With him I simply had a chat. It might as well have been at Starbucks over coffee. He didn’t ask anything, or say anything about mast cells possibly causing my Gastro Intestinal (GI) symptoms of bloating, heart burn, etc. Yet I have found that I now have some control over them and what I cannot control I believe is something in my immediate environment that I lack control over as of yet. Although one of the suspects, the air I breathe, is on my list and I have researched air filters for my home and for on my face as I travel. At some point I may need this to survive, as others I have met more recently with mast cell disease do.

And my immunologist was the best of all! Fixed in his beliefs and on the verge of retirement. Along with him comes the super book smart intern who knows everything. Been taught everything, passed all his tests with flying colours. Nothing exists outside of the boxes he has been so carefully taught by other doctors. Immunoglobulin E is the centre of his universe, just as it was and is for the soon-to-retire doctor. They do the same old test they have done over and over with everyone they see. Yes I am allergic to dust mites and grass, but not tomatoes or cherries or peanuts.

But they are wrong on three of them. Both hands and arms they do their tests on go red up and down, something I have never heard a person who had these tests speak of. Yes I got a bump from histamine, dust mites and grass samples. But just like the cardiologist, neurologist and gastroenterologist, he just ignores what he cannot box up and ignores me when I ask about it. Thank you very much! NOT!

Unbelievable! Really? None of them know anything about mast cells?

How is that possible? All of my issues make sense to me now. All of my past fits with what I have learned recently. I can predict and control symptoms. I have no doubt I have found the answer.

These doctors cannot put me in one of their boxes and my symptoms are simply not severe enough for any of them to even care one iota about doing something. In the end, none of them solved a problem and all of them basically ditched me with excuses and simple minded blame.

I find the memory loss and cognitive dysfunction completely debilitating and prevents me from working. I do complex tasks and solve extremely complex problems that others cannot solve. And I am very good at it. Thank goodness, because with a few clues from friends and some help from a more knowledgeable Naturopathic Doctor, I now have the problems well defined and solutions in place where possible and they are helping immensely in dealing with it.

For the last thirty years, every problem I have sought help for through our medical system has been ditched. I have had simple dogma and propaganda thrown at me repeatedly. I have been given pills occasionally to counter  a few symptoms, even when the drugs are dangerous and addictive they are provided as the only answer. This would never fly in Information Technology and business! Actually solving problems is required! You cannot just shuffle things about and pretend!

But the only person to really care enough to solve my problem was and is still me!

Fortunately I have convinced my family doctor (GP) that I am right. That what I have been telling him for 25 years is right. I am right! I know I am right. Everything fits! One thing I know from my work in Information Technology and my life with my dogs: When I know I am right, I am right.

I have been wrong about many things; I have changed so many things in how I care for my dogs because of what I have learned. I know when I don’t know the answers. I know when I am guessing or hypothesizing. I can observe objectively and know the difference between subjective and objective experience. This is critical for problem solving! Humility is necessary. Arrogance and expectation are huge problems that prevent learning the truth and finding solutions.

Unfortunately this a total paradox for doctors as they seem to have to be narcissistic uncaring individuals just to survive all the pain and suffering they see and their inadequacy in being able to help most of them. They carefully do their tests to put you in one of their little boxes. If symptoms are severe enough they will give you a pill for it, or cut it out if possible. But they know so little about one key cell that can explain so much!

Mast Cells!

Unfortunately they don’t do any tests for mast cells. They don’t circulate in the blood stream and the changes they cause are not easily measured in samples of blood. Only the overflow shows up and if you don’t know of them, you explain things without them, or you shake your head, shrug your shoulders and ignore it. Been there, done that! All of my doctors I have seen, including two other GP’s, fall into this category.

They make excuses and point fingers of blame to other things; you drink too much, you smoke too much, you eat too much, you sit too much, you don’t exercise enough… Once they have pointed that finger, good luck on getting a fair thought and help.

I did it on my own! I did it with the help of friends who cared. I found a doctor who knew something and seemed to care. I have since found that my GP does care. Unfortunately for that to happen, I had to solve the problem myself and prove it to him. But I am still glad he had the balls and strength of character to admit it. Most doctors don’t. They put the label on and they don’t see how inaccurate or wrong they are.

Everything that follows is just in your head according to them. They don’t understand cause and effect. They don’t understand the difference between symptoms and cause and often assume symptoms are the cause. This sucks for people that don’t fit into simple boxes. I am also sure it sucks because if you lack a certain key piece of information, everything you do is wrong!

I could never exercise and get fit and lose weight with exercise. I have made myself sick so many times trying in the past. What I lacked was the understanding of how my mast cells are involved!  Enlightenment has enabled me to control the environment, my body and my mind.

Knowledge of mast cells and how they trigger inflammation and immune responses and how mast cell disorders impact that process. Combined with knowledge of food, nutrients and anti nutrients and other environmental factors that influence them, the problem has become clear. The solution is more obvious, clarity, not cloudy!

Heat, histamine, lectins, sapponins, salicylates, oxylates, phytates… All are relevant and unknown to my doctors. Unknown to me they caused me to fail in every previous attempt to lose weight and become healthy and fit.

Seeing that I have lost 50 pounds, quit drinking, completely changed my diet and basically changed everything that was bad on my own as a result of my new knowledge; made it so my long time GP could see beyond the excuses and the blame that had been the foundation of the past. He could not ignore the result and could see I was right and that I did have a real problem! He now writes everything I tell him in my file now, unlike the past (been telling him my back problems were due to waves, or periods of inflammation for 20+ years, which he simply denied and ignored). He has always known I am an intelligent person, but now he treats me as the only expert in my health and is fully behind me and supporting me. This has been the biggest step forward so far.

The results prove me right! They cannot be ignored!

All of this struggle could be a lot easier if mast cells would just get a little more from the press and better circulation!

Richard