When I first started blogging about food, it was with a very specific purpose- i was cataloging a brand new battle with really painful life altering symptoms.
At 18 i battled crippling gastro-intestinal distress that wouldn't be identified as a food allergy until i was 21. Constant bouts of hives left me baffled. I underwent invasive tests and scans that involved unpalatable barium shakes with no answers. And when the pain would fade i would live my life like nothing had ever happened. I also got that wasp sting that pushed my immune system into dangerous allergy territory. I'm a clumsy individual and was constantly getting injuries that involved high dose waves of nsaids and steroids. About once every 2 years I'd contract some infection needing antibiotics. In short, i completely destroyed the balance of bacteria and protective coatings in my digestive system, i was on a roller coaster of suppressing my immune system and attacking my digestive system for years. I get hives from sitting near heaters or too close to a sunny window. I spent an entire summer with full body hives from air conditioning- cold urticaria- allergy to being cold. That was the year it became too much. I went on an allergy elimination diet. I went on a modified Gut & Psychology diet of anti-inflammatory eating. It worked. All of my symptoms went away...and then i had a baby, and that baby got pink eye, which meant i got pink eye, and antibiotics...they do their job really well and with purpose, but they aren't necessarily good for your health. After a few months of battling new symptoms, i took a rough fall down some stairs and got a concussion. My body just stopped fighting. The next few years felt like a battle for survival. In moments of desperation i took tests, i saw allergists, i had too much blood tested and fainted, and eventually I got a loose diagnosis: "Unidentified Autoimmune Disorder".
Unidentified autoimmune is basically a short way of saying "we know you're body is attacking itself, but we can't figure out why". We can see the rashes, we have names for them like dermatographia, dyshidrotic eczema, urticaria. We see your white blood cell count showing your body fighting. It's a guessing game. We can keep testing- which is expensive- or you can symptom manage. Friends, i symptom managed really poorly for several years, and i'm fortunate that my mental health was pretty good to begin with, because having such a drastic reduction in quality of life- especially as a wife and new mom- was depressing. I tried GAPS again, but it didn't work this go round. I was on 4-5 high dose antihistamines a day. Finally, i turned to even less accurate testing- intolerance and sensitivity tests.
Allergy tests aren't super accurate, they get false positives, false negatives, and sometimes just flag something that's a big part of your diet but not actually harmful. The most accurate tests are the skin prick tests- my autoimmune disorder attacks my skin and dermatographia means my skin reacts to pretty much any stimuli so it's not a great option for me. The next most accurate are blood tests for IgG response, but mine involved a separate vial for each allergen- a lot of blood and a lot of money- and the items they chose weren't the answer. Intolerance tests are IgE tests and even less accurate. I've tested blood, saliva, and hair. I've been poked, prodded, and scanned. I've had the gene mapping for allergies. After 2 years of a really miserable losing battle with my autoimmune disorder, i took a test that flagged yeast. Cutting yeast out of my diet was a game changer. It gave my life back. It didn't give me all good days, but it gave me frequent good days. I was able to lower my symptom management meds- but not eliminate them. Recently i went back on an autoimmune protocol diet, i did another intolerance test that flagged some things to avoid that i already knew my reactions to.
For someone like me, at a deadend in testing, trying to avoid immunosuppressants, intolerance tests are an excellent guide. Not only am i game to try just about anything, but i'm getting pretty in tune with how my body reacts to things and having something to help me pinpoint the cause is helpful. When my most recent test flagged cobalt, it wasn't surprising because my sister is also allergic to cobalt, and the dyshidrotic eczema on my fingers can be affected by cobalt. I have multiple references to draw conjecture from. I don't recommend them to people who aren't in my shoes, but if you are, i recommending starting with clean eating and going from there.
My blogs have a lot of gaps- gaps from when i was healthy and didn't feel the need to catalog, gaps from when i was too sick to even get out of bed. The hardest part is looking "healthy" and "normal" when you feel like crap all the time. Another hard part is being given the name "unidentified autoimmune" that makes it sounds like it's made-up. People who don't have an autoimmune disorder dont understand, often don't believe you, and often roll their eyes. My husband lives with me, he sees the rashes and the struggle and the drop in my quality of life. He's seen my body attack itself and on good days he still forgets that it never really goes away, is never truly "fixed". He knows better than most and he can forget, so how can i hold it against the people who have absolutely no idea what it's like. Having an autoimmune disorder taught me to communicate how im feeling and when i need help. It taught me how to be truthful with myself about what is worth tolerating, and what i'm willing to do for a life worth with living. It taught me to be more sympathetic to the unseen struggles of others.
At the time of writing this, today is not a good day- there's some kind of pollen in the air, i'm on 5 antihistamines that aren't doing their job. My skin is covered in welts and bumps and itches so much. My eyes and nose are rebelling. It's also my birthday- because autoimmune disorders don't care if it's your birthday. Tackling yeast and diet have gone a long way towards treating the chronic fatigue that decimated my quality of life, so today is not a good day- but it's not a bad day either. I still have many small comforts and joys and a cheerful attitude about it, but today is a reminder that i don't get to stop fighting, and i hope if someone reads this blog because of my old blogs that they know they aren't alone- there are people out there who really do get it, and sometimes we make progress.
Next week i'll go back to blogging my homesteady healthy happy life, but today is an update- on how far i've come and how it can also still suck sometimes.
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