Is the response I generally get when I tell people about my diagnosis. So instead, I have started explaining instead that I have a Very Rare Autoimmune disease.
Because, let’s be honest here, no one actually knows what an autoimmune disease is.
At least I didn’t. Until I discovered I have one. Basically an autoimmune disease occurs when the body’s immune system gets confused and starts attacking itself. Body fail.
My particular disease results in my oesinophils (little soldier white blood cells that usually target infection or allergic reactions) having a partay in my gut, and storming my blood. Thinking that there is need for warfare, more and more troops are called in, and my gastrointestinal tissues are seen as the enemy and attacked. Awkward!
The result is severe abdominal pain, vomiting, diarrhoea, weight loss (the one symptom I didn’t get. Typical!) and other gastrointestinal symptoms unmentionable in polite company. Kind of like your average 24 hour ‘gastro’ attack. Aside from the fact it doesn’t end after 24 hours.
What little research there is indicates that the “gold standard” of treatment is to use steroids to immune suppress, or stop those little soldier cells in their tracks. But, as I found out the hard way, Prednisolone + Bipolar = Complete Disaster. The second line of treatment was to avoid all potential food allergens by sticking to an (extremely annoying) elimination diet, eliminating gluten, seafood, nuts, soy, dairy and eggs. While this has lessened my symptoms to a degree my eosinophil blood count is still four times the normal limit. Plus I’m kind of driving myself mad trying to find food to eat that is allergen free.
So this is where I’m at. Trying to get my body to work, and wondering what will happen next. My immunologist has indicated more tests and biopsies and potentially starting on a regime of “a different type of steroid that won’t send me mad”.
That would be a first 😉