Last November marked five years since my pulmonary embolism which led to the discovery of my kidney disease: Idiopathic Membranous Nephropathy. The idiopathic part, which literally means unknown cause, is the part of my diagnosis that has bothered me the most all these years.
Why the hell did my body–the healthy body of a runner with no other underlying disease or malady–develop this disease?
It’s been a roller coaster of a ride through immuno-suppression therapy and all the terrible side effects, three hellish months of strict veganism, and becoming a vegetarian to gain my health back. Years of vegetarianism to stay in remission, which I thought I could handle and which, turns out, is harder than I thought it would be with school and a family who does all the cooking. All this and still no real answers to why it happened in the first place. Especially after forty years of health with no lead-up or warning.
December 2017 marks the official removal of the ‘Idiopathic’ part of my disease. I FINALLY have answers to the why question and let me tell you how surprising they are…
I’m skipping ahead so let’s go back to the beginning. The beginning that didn’t look remotely related to me personally at the time.
I have several friends who struggled with food that made them sick a few years back. Two of them researched enough that they believed they had a gluten allergy since eliminating gluten eliminated their symptoms. Both went to extreme measures to avoid all things gluten, and still got sick. Both are kick-ass and didn’t take it lying down. Which led me to the LEAP diet and MRT test.
I halfheartedly longed for a way back to my omnivore days where I could eat lean chicken and the occasional filet mignon when the need arose. Seeing my trail-blazing friend figure out exactly what she was allergic to (yeast, not gluten) and able to manage her debilitating pain without medication had me hopeful that this was the way to do it.
March of 2017 I started working with my friend’s dietitian who specializes in kidney disease. I did the MRT blood test in May and (halfway) embarked on the LEAP protocol in June. MRT stands for Mediator Release Test and is a measure of how my immune system cells react to 150 different foods and chemicals. It gave me a list of foods that are causing an inflammatory response in my body split between a “you should stop eating these for now” red and yellow list, and a “you should eat these foods” green list.
What does any of this have to do with kidney disease? MY kidney disease is an autoimmune disorder which is triggered by inflammation in my body. That’s the same reason vegetarianism keeps it at bay since digesting the flesh of animals increases inflammation. Now you’re with me, right? My whole thought process setting out was this: if I can trade the decreased inflammation from not eating meat with not eating whatever I specifically am allergic to then I could theoretically eat meat again.
It was a long shot. I knew it. I didn’t care. Stranger things have happened, (look at me with a kidney disease!) so why not try.
In December, my nephrologist (fancy word for a kidney doctor) confirmed that the changes I’d made to my diet based on my MRT testing had resulted in such stunning changes in my blood work that she was confident in saying that we’d found the cause of my disease.
Did you catch that? Cause = inflammation from immune reactions to various foods. I can’t make this shit up, people! The last five years of hell are because I was eating foods that my body doesn’t deal with well (for forty years). I’ll write up all the details (it will be a VERY long post, I warn you) but this is the gist of my answers.
It is stunning and overwhelming to think of this one case, mine, and wonder how many more people out there suffering with crazy health scares that don’t make any sense might have similar causes. It’s a soapbox topic from the beginning of my blog, this food that isn’t a food and how terrible we eat as a country, but this takes it to a whole new level. Don’t you agree?
Stay tuned if you want nitty gritty details because you know I’ll share them! And my dietitian is doing a case study of me (look, mom, real science and shit!) to publish. Maybe I can somehow help others in similar circumstances by sharing my story. For me, I’m just glad I get to eat meat again!