A never ending deluge of diseases, syndromes and medications….enough already. With all the other things going on in my body I can’t deal with anymore. Seriously. I made a decision the last time I was bedridden in pain and nausea it would be the last. It’s overwhelming me.
Though I must say I am hopeful we finally found an answer to part of my dilemma. I say “we” even though I had to find the issue on my own, the cause of my constant sickness, and had to inform my doctor of the same. If we know what’s the main cause we can find a solution right?
So far this year I been really ill ten different times. It feels like I’m fighting the flu bug on steroids for 8 days straight. Each episode begins due to something I’ve eaten. Just imagine you have 70-80 days so far this year (mid-September) of being bedridden. Too nauseated to sleep, eat or barely take care of the dogs. They were fed but had to skip the walks. They followed me from bed to couch to bathroom, with a lot of time laying on the bed. They slept, I stared blindly at some cooking show, adding to the nausea.
There is a definite trigger, possibly several, that I have a reaction to. The last GI doctor I saw in April missed it entirely, took the easy way out after seeing my list of prescriptions.
“Oh, your on a high dose of hydromorphone, therefore you’re just constipated and that’s making you sick.”
“Nope, you fool,” I said within my head. “You missed it.”
I was so disappointed that I went on a mission to find the cause of this constant sickness myself. Suppose I can’t call it “constant”, as it is very episodic, but certainly feels like I’m fighting it more and more.
I started a journal of everything I eat and how I felt afterward. I knew there was a definite trigger that caused all my gastric and sinus issues, and the only way to find it was by building a data base on everything that went in so to speak.
I have to give credit to Dr. A, as once I documented identified the symptoms in more detail he quickly ended on the same conclusion as I had come up with. I hadn’t seen him since I had started journaling my diet when finally I had a my own “aha” moment.
I had gone through another 8 days of being sick the second week of August. The same symptoms presented themselves during the last 4 episodes prior to this. I started journaling my food early on this summer. This particular episode started a day or two after consuming a trigger food. I thought I had it narrowed down to soy sauce specifically. Boy was I wrong. Read on.
I suffer major sinus problems, mainly a runny nose that lasts 2 days. Like a major allergy had kicked in. By runny nose I’m talking about going through 2 full boxes of tissues, or toilet paper or paper towels if they were handier. I even learned a new word, rhinorrhea, the medical term for a runny nose.
I suffer from fever-like symptoms, as one minute I’m burning up, the next chills and shaking and the next minute I’m sweating up a storm. I never really throw up, but day 2 of the runny nose business the stomach joins in.
I have numerous gastric issues, nausea and gas add to the fun, but turns into horrible diarrhea for the next 3 days. I had to be 10 feet from a toilet at all times, including throughout the night. When it hit, it hits hard. Is that why it’s called the scoots???
Sleep would be impossible for the first 5 days, which always adds to the pain and all the aching bones. The lack of sleep brings on a round of depression and, coupled with being so sick, I once again reach my limit.
The last episode happened when I began to get sick the last day of August after eating takeout from the local rotisserie chicken joint. No it wasn’t food poisoning, as Mrs. Kyd ate the exact same food and didn’t get sick at all. Nothing. She hadn’t gotten sick the previous 9 times either. I was alone in my misery….sorry, too melodramatic.
During those 10 times I’ve begun to see a pattern with this illness, and have been trying to identify the triggers. But instead of trying to “guess”, I focused on the symptoms. Sure enough the same pattern occurred with the same symptoms and when googled the same disorder kept showing up: Mast Cell Activation Syndrome (MCAS).
So with my limited brain capacity I need to rely on outside sources to better explain the syndrome. I know the three components: Mast cells, histamine and histamine intolerance, and a trigger. What is causing this reaction as described above.
(I’m cheating by citing various sources but it will give you a better idea. The points below comes from Cleveland Clinic once again, with links to the main articles below.)
A mast cell is a type of white blood cell that lives in your body’s tissues and acts as an alarm system for your immune system.
https://my.clevelandclinic.org/health/body/mast-cells
Mast Cells:
Cause inflammation: These chemicals widen blood vessels and send fluid into tissues to help fight off threats
First responders: They sit in tissues near the skin, airways, and digestive tract, waiting for harmful invaders like bacteria and parasites.
Release chemicals: When they spot danger, they open up and release stored packets (called granules) filled with chemicals like histamine.
Since it’s part of the white blood cell complex, mast cells are releasing various anti-bodies and enzymes, one of which is histamine. A small part of the population (guess who made the cut) reacts badly to histamine in the form of a bad cold or sinus infection, or bad stomach with nausea and diarrhea, or both.
Another cell in the white blood system, called a macrophage, is also responsible for releasing antibodies. This is in response to the cancer that exists in my white blood cells. My own body is in battle at all times, I’m the victim of the war.
My body is in a constant inflammatory state, which might explain the constant levels of pain.
I’m screwed on two fronts.
Histamine is released by the mast cells and plays a role in causing inflammatory processes in response to a trigger, whether an allergy or a food intolerance. In my case it must be something I have eaten that triggers an over production of histamine, which in turn causes a major response (being deathly ill) due to histamine intolerance.
https://my.clevelandclinic.org/health/articles/24854-histamine
So the solution is simple one would think, but not so my loyal readers. It can never be simple if I’m involved. “Take an anti-histamine” is probably what you’re thinking. You’re right, but in my case I need to take two different types. I take an H1 anti-histamine for the sinus issues, and an H2 anti-histamine for the GI issues. (Two more drugs, bring the new total up to 20 I believe).
Turns out there are 4 or 5 types of histamine, and as I read through the description wonder if more than one is causing my symptoms. Besides the flu-like problems described above, histamine intolerance may cause inflammation and actual joint pain.
Then there’s the food triggers. The only way I can properly find the food or foods that are responsible is to quit eating everything for six months. Six whole months of no gluten, caffeine, lactose, processed foods, aged foods like cold cuts or a good cheese, and worst of all…chocolate. It could be all fermented foods, like soy sauce or sauerkraut.
When I say “foods” it could be entire food groups Maybe I have an intolerance to anything with vinegar, or everything made of dark or milk chocolate. White chocolate is fine. Even half the fruits and vegetables I used to eat are on the bad list, some high in histamine, some not. My new way of eating is to check the histamine levels of every food and avoid the high ones.
If this histamine intolerance is the root cause of being sick, I have no other options than to follow the diet, take the new drugs and hope there isn’t another episode. The term is elimination diet, where you eliminate all foods that could be the trigger, then after six months add in one at a time to try to find the bad actors.
I’ve never been this serious about following doctor’s orders, I don’t know what else to do. I can’t get sick again, the last one was it.
Wish me luck.