Sometimes you really don’t want to write things down. Like, you can live with it in your head. You can deal with the theoretical, but when it happens IRL, and then you go around having to say it out loud to people, wow, does it suck. Believe it or not, I’m not talking about my own celiac disease, and how it knocked me on my ass, because I get knocked down and I get up again since I’m living the way Chumbawamba taught me.
Nope, this is about someone else. My mom. My mom who has been suffering from dementia, weird vision problems, weight loss, and a severe loss of coordination. A woman who lived independently on over 40 (maybe 60? I suck at remembering numbers, and/or guessing the measurements of things) acres of farm land, took up photography after retiring from her incredibly satisfying career as an English teacher, and traveled alone by car across the American West after my stepfather passed away unexpectedly. A woman who suddenly couldn’t do jack shit. This was seven years ago.
As you might imagine, the past seven years have been frustrating (“There’s nothing wrong with me, everyone my age forgets where they’re going when they drive.”), and eventually tragic as she had to be moved from her home, first in with my older brother, and eventually into an assisted living facility. All along we were asking, “Did she have a stroke? Is it early onset Alzheimer’s?” We were repeatedly told no, until eventually we were told that it must be a very rare form of Alzheimer’s and she now has brain damage in a very specific part of her brain. And then I came across this article about gluten ataxia in Living Without magazine.
After digging in because, holy shit, this sure does sound like my mom, and being directed to another article about gluten ataxia by the incredibly helpful EIC, Alicia Woodward, I knew this was what my mom’s mystery health issues were all about. And I also realized the fact that even a gluten-free diet may not be helpful after all of the damage that has been done to her brain.
Seven years after the symptoms started to appear, I stumbled upon something that made them all connect and make sense, as every single symptom described—even the way they came on—mirrored my mother’s experience. Every. Single. One. Naturally I called her GP to get the appropriate blood tests stat. And even though I’ve had tests up the wazoo, I still don’t totally understand the science when the doctor said to me, “Oh, your mother is a very strong positive.” Other than, yeah, gluten is a serious problem. My mom’s doctor immediately prescribed a gluten-free diet. I called the neurologist who has been seeing her, more tests will be run, more research will be had, and in the meantime my mom is on a gluten-free diet. In an assisted living facility. And she has dementia. Which means . . . it’s not going to be perfect. Far from it. In fact, my last conversation with my mother left me even more discouraged about the possibility that she would be able to maintain this, much less be willing to give it a try. It’s going to be a struggle.
I sent some gluten-free treats, but my mom (who, as I mentioned before, has significant brain damage – thanks gluten!) is not able to fully “get” it. She loves the cookies and crackers I’m sending, but I was just visiting her while I was in town during breakfast time when she was enjoying a nice bowl of warm oatmeal. I’ve never been so disappointed in oatmeal in my life.
This will be a laborious journey. One that may not make one damn bit of difference, but right now I’m pretty pissed off that a girl who likes to use foul language on the Internet was the person to figure this out about my mom, and not say, someone who went to medical school.
And by the way, to that doctor at St. David’s in Austin that I told in November of 2011 that I had celiac and it was a hereditary condition, and causes neurological problems, and you laughed and told me that wasn’t true: Fuck you. No really, fuck you.
To all of the doctors who kind of shrugged, I don’t want to say an outright fuck you, but it should matter that my mom’s family has an intense history of autoimmune diseases. You checked on that, right? Her mother had lupus, her sister has a variety of autoimmune diseases that would rival freaking Baskin-Robbins. Maybe when a patient comes in and complains of neurological problems and you can’t identify the issue you look at her medical history.
I know that gluten ataxia is rare. I know that it took me—someone who writes down every thought she has on the topic of gluten—two years to discover the condition. But that doesn’t stop me from wanting to go on an ass-kicking tour of Oklahoma and Texas.
My mom was an incredibly intelligent woman, an avid reader, who always supported the “weird” kid in school, as well as at home. Now, she’s confused, angry, and half the person she used to be. If that. And the brain damage is probably-definitely gluten ataxia. And even if I send her gluten-free cake every single day, and she somehow manages to remember that she can’t have gravy on her mashed potatoes, it might not matter one little bit. But we’re trying. FUCK.
Image via Craftster