I have had weird unexplained symptoms intermittently for most of my life. I was apparently allergic to cow’s milk but in those days they changed you are than the milk! The symptoms became worse over the years but were written down to unexplained viruses. Thinking back, they became worse after antibiotics that I took for my (relatively) few teenage spots (why antibiotics ??) and other Diamine Oxidase blockers that I took such as the pill for my heavy periods during my teens. I do wonder now what other antibiotics I was given during my early childhood. The symptoms came and went over the years and I saw many doctors also over the years to no avail! I had times when I could not see properly! Could not hear properly! Could not walk properly because of pains in the soles of my feet. All seemingly, different causes.
I nearly died of food poisoning and I was given very strong antibiotics for weeks on end. I started to gain weight at a rate of knots. My joints started to flare with pain and my fingers started to become misshapen. I had to have an operation on one toe joint and the surgeon said that within 5 years I would need both my toe joints replaced!
In 2009 I met a biochemist/researcher (now retired) and he diagnosed me with histaminosis (severe histamine intolerance) and severe dysbiosis (caused the repeated antibiotics for food poisoning?) and arthritis. In early 2010, after more tests, I was diagnosed with Mast Cell Activation Disorder (MACD). The tests found elevated tryptase and prostaglandins and high triglycerides also higher than normal rheumatoid factor.
I started to look at myself and my symptoms as possibly being interlinked. They had been many…..
My Mast Cell Activation Disorder and Histaminosis symptoms:
In short my symptoms have been (fortunately not all at the same time LOL!) including:
headaches; muzzy head; brain fog; throat constriction; acid reflux; swollen lips; sore scalp; freezing painful fingers and toes; crippling joint pain especially over night, or after drinking a glass of wine; sudden prickling sharp pains in my knees and feet; fuzzy or blurred vision at times: floaters in both eyes: painful ear lobes – so sore I could scream; sudden large mouth ulcers that came and then disappeared; swollen sore tongue; dizziness; feeling faint/ fainting; asthma like breathing on occasion; low blood pressure; diarrhoea; sickness; stomach pains; anxiety; heart pounding; severe choking while asleep; insomnia; cold shakes; weight gain; skin rashes;itchy skin; an outbreak of seborrheic keratosis wart type things over various parts of my body; painful soles to my feet; dry swollen eyes; narcolepsy type symptoms where I suddenly fell asleep – after food or on trains or on planes; hair loss; body hair loss; extreme reactions to the smells of perfume, common house-hold chemicals and or someones’s cigarette smoke; anaphylaxis; burning inflamed skin from using hair dye, shampoo, body wash; …sudden reactions to eye make up; blisters around my eyes; sudden vaginal dryness, pain on sexual intercourse….. You name it – I got it!
I suddenly went into menopause at age 38 with no definable extra symptoms at all and resisted all attempts by well meaning specialists to get me to take HRT.
I do not test positive for any allergy but i have sudden allergic reactions.
The smell of perfumes, soaps, paint or other chemicals could (and can still) make my throat immediately constrict and my voice disappear, my heart race my sweat glands exude a weird smell and gave me a urgent need to urinate/defecate..In short I experienced shock symptoms. This became increasingly worse until I found, for a time, that I could not sit in a concert hall or go and see the ballet or to a cinema as other people smelled so much of perfume and shower gel that I was overwhelmed.
I started to remove high histamine foods out of my diet in 2009. I cut out all coffee, black tea, sugar, alcohol and fermented foods immediately. Then all meat,dairy and fish. In 2010 I went high raw vegan (apart from some egg occasionally for B12) , shaved my head as the touch of my dyed hair caused red weals on my face, and cut out all body products such as hair dye, shampoo.
I found stress to be be a major contributor to my condition and I stopped working as I could not cope with my symptoms at the time. I do still lead a somewhat stressful life as both my Mother (dementia) and Husband (3 strokes) are at home with attendant care that I organise and manage.
I felt I would soon have to live in a bubble to protect me from the world.
As I battled on alone I started to feel better and I discovered by accident that adding very high greens to my diet and cutting out olive oil and gluten alleviated my symptoms even more.
One day, I discovered the book The China Study and then Dr Fuhrman’s books on managing and or recovering from illness by diet.
I am now feeling pretty good. I have lost weight (160lbs down to 122lbs) but have more I could lose. I can now go to the cinema again as I do not react so badly to chemical smells and I really feel I am getting better all the time although it is a very slow process. I can, however, become ill very quickly if I ever go off diet and I still get joint pain flares and nodules appearing on my finger joints – usually if I have been in a highly perfumed environment for some time or if I eat something a little fermented or containing yeast etc, by mistake.
I currently take no medication, as I have always had extreme rather unusual reactions to medications in the past and at least one pharmaceutical company has asked me not to take its products.
I supplement Vitamin B12 as I now eat no animal products at all.
I am work in progress and I am very much my own experiment!