I recently found out about MCAD and stumbled upon this forum. I have been sick with chronic fatigue syndrome, orthostatic hypotension, fibromyalgia and hypothyroidism for about 2 years now. But I always felt that there was something more. My symptoms fit the criteria for the above things that I've been diagnosed with, but recently I have been looking more at MCAD as being the root of them.
I have always had seasonal allergies since I was a kid, but never to anything else. About 2 years ago I suffered a major panic attack (which I now believe to be a major histamine release) while doing an aerobics class at the gym. Ever since then my life has not been the same. I suffered months of debilitating anxiety and fatigue, as well as full body rashes. Finally, I "crashed" after doing the GAPs diet and candida cleanse (all fermented foods and slow cooked broths!) and ended up in the hospital. They diagnosed me hypothyroid. Then a couple months later my GP diagnosed me with chronic fatigue syndrome and fibromyalgia. I began a natural protocol to boost adrenal activity, which helped with my energy levels, but the food sensitivities continued to persist. I am also extremely sensitive to medications and supplements with fillers. I did an elimination diet and discovered I was histamine intolerant, so I cut out all high histamine foods. Soon after I discovered that I was sensitive to salicylates and sulfur. Didn't leave much on the menu.
About a week ago I ate a bit of chicken with tumeric and went into anaphylaxis for the first time. I got through it without any benedryl actually because I am so terrified to take anything. Since that day I have not been able to tolerate ANY food without a reaction. Even white sushi rice causes my chest to tighten and my throat to swell. Right now I am living off rice cereal made for babies but even then I get body pain and pressure in my head.
I went to my GP the day before yesterday and he ran all my typical panels. Said that everything looked great and that my thyroid is now fine. He gave me a PPI, which I have not taken for fear of adverse reaction. He then suggested psychotherapy *sigh*
My symptoms that are persistent:
body/joint pain- especially in the morning
on and off constipation
24 hour heartbeat awareness
blood pressure drops and chills (especially after eating- I'm FREEZING after I eat)
ringing in my ears
tightness in chest
When I have the allergic reactions its the minute something hits my mouth. My lips tingle and my tongue and throat feel swollen. My stomach turns and my head feels heavy. In extreme cases I will vomit or have diarrhea.Then my body hurts. This lasts for about an hour then I return to my normal feeling of crap :)
The weird thing is I have no fatigue unless I eat. I sleep fine at night and don't get sick very often. The biggest issue I am having right now are these crazy reactions. They also happen when I get too hot, or even in the car sometimes my chest will feel tight and my face will get hot. I never get hives or swollen lips so doctors won't take me seriously.
Sorry for the long post, I'm just at my wits end. Eating is so traumatic, I'm losing so much weight and I'm hungry all the time. Does this sound like MCAD? I have an appointment with an allergist next week who supposedly is versed in mast cell disorders, so I'm hoping for some answers at least.
Has anyone gone through anything like this? Any advice would be greatly appreciated!