What is mast cell activation disorder (MCAD here on out) and what does it have to do with biotoxin illness? MCAD is easier to explain what it looks like than what it is. If that makes sense.
MCAD was the first real “diagnosis” we got when figuring everything out. I put that in quotes because an official diagnosis was never truly made, but that’s what kids were being treated for and treatment improved symptoms. When we were going through with this treatment in 2013, it was still a very new disorder. Its closely related disorder, mastocytosis, is a rare mutation causing very similar symptoms as MCAD. However, no true genetic links have been made in MCAD that I know of.
In short, MCAD is where the body can and does react to nearly anything. For typical allergies, there is an identifiable protein, such as milk protein or egg protein. But with MCAD, the affected can have a reaction to heat, cold, chlorine, perfume, sugar, smoke, stress, being sick/viruses, food dyes, additives, metals, alcohol, biotoxins such as mold and bacteria, sunlight, plastics, scents, etc. These triggers, as they are called, can change at any time. But mostly once you have a trigger, you will remain reactive to it.
What do I mean, exactly, by reactive? Rashes, hives, feeling faint, heart palpitations, trouble breathing, light sensitivity, fatigue, muscle and joint pain and more are all reactions that can occur. I’ve added a list of possible symptoms, but they are, by no means, a complete list.
I believe that our mold exposure caused the MCAD onset in us. Every one of us has some varying degree of MCAD. Kylee had idiopathic anaphylaxsis which went away when we got out of mold. She also would get hives, itching, crushing fatigue, flushing, fevers and painful joints. Trevor had rashes, hives, constant itching. He was the most chemically sensitive of all and had severe changes in mental state. I have more on that in a minute. Weston had predominately stomach issues. I once spoke with his gastroenterologist about mast cells. Since Weston had several biopsies that were checked for eosinophils, I asked if his doctor could stain for mast cells. (I’ll explain in a bit). The doctor said, why? We already know he has a mast cell problem, otherwise he wouldn’t be so reactive. So that was that! No further explanation, no plan of attack, nada.
One day Trevor went over to the neighbor’s house with Kylee. He came home and was screaming. He was so angry and had uncontrolled rage. A monster had taken over our son and left us with this. He was also puffy and red, his eyeballs were sunken while the rest of the eyes were swollen. Since we didn’t know what was going on (yet, this was a normal part of our lives at this point), we’d figured out that prednisone calmed him nearly instantly. Later his neurologist told us this is because his brain was incredibly inflamed and the prednisone helped reduce this. So here are two pictures. The first one is what he looked like when he came home and the second is what he looked like 10 minutes or so after prednisone.
Notice how red his face was. It was quite swollen. See his lips? After the prednisone he was happy. There was slight swelling still in eyes, but the improvement as AMAZING. After we fixed the disaster, we asked the kids what had happened. The kids were looking through magazines and one of the magazine had a perfume insert. Trevor smelled and insert and BAM.
What is MCAD really? We all have mast cells. They are simply a type of cell. This cell releases over 100 chemicals. Here’s the definition given to me by google:
a cell filled with basophil granules, found in numbers in connective tissue and releasing histamine and other substances during inflammatory and allergic reactions
When the body senses a foreign substance it doesn’t like, mast cells come on over to a site (tissue, skin, muscle, etc) and release histamine and many other chemicals. There are two things that may be happening in MCAD. First, a body may have too many mast cells. So that when a reaction occurs, the result is much more severe because there is much more of these chemicals. The other thing that may be happening is that these cells are confused and just start releasing chemicals for no reason. One or both of these can be happening. I’ll discuss treatment in further posts.
Symptoms of MCAD
Rashes/urticaria (with a known trigger or idiopathic)
Edema (same as above-with or without cause)
Sensitivity to foods
Sensitivity to heat/cold
Flushing (a sudden redness, usually in cheeks, sometimes in ears, neck, chest)
Itching (with or without rash)
Anaplylaxsis (idiopathic or not)
Gastrointestinal complaints (constipation, diarrhea, gastroparesis)
Headaches (I know, headaches seems to be symptom for nearly everything)
Inflammation of anything in the body
Weight loss/loss of appetite
Sudden changed in blood pressure
Changes in metal state (irritability, confusion, behavior changes)
Other diseases related/comorbid with MCAD
POTS (Postural Orthostatic Tachycardia Syndrome)
Chronic Fatigue Syndrome
Biotoxin Illnesses (Lyme, Toxic Mold Exposure/Water Damaged Building syndrome)
Ehlers Danlos Syndrome
MTHFR mutations/methylation problems
A good, easy to read and comprehensive website is: