So I woke up feeling “celiac off” yesterday. I went to bed feeling really “off” last night. And this morning, I’m feeling so “off”, I just put a note outside my home office door that says “please do not disturb”.
When I’m feeling this “off”, human interaction is not my friend. I’m agitated. I’m irritated. Let’s face it…I become an a**hole.
No…I have no idea what happened or what I ate that was the culprit. It’s the crap shoot that is our disease. We eat outside of our home, we run a risk. We can mitigate that risk as much as humanly possible, but it’s still a risk.
I’m amazed, even after all of these years, how much celiac can affect my entire being when I ingest gluten.
And this is the perfect segue into an email I received recently that deals with Gluten Ataxia.
What is gluten ataxia?
Well…ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements. A person with persistent ataxia may have damage in the part of the brain that controls muscle coordination – the cerebellum. (Source: Medical News Today).
Gluten ataxia occurs when the antibodies that are produced in response to the ingestion of gluten attack the cerebellum. Left untreated, the condition progresses, causing irreversible brain damage.
I was not too familiar with gluten ataxia until I received the following email from a fellow celiac:
Hi Gluten Dude,
I am a 29 year old male and I was diagnosed late last year with Celiac Disease and Gluten Ataxia, after what was, the doctor’s think, at least 10 years of undiagnosed suffering. Undiagnosed because I was largely asymptomatic until the later stages of the disease.Right around the time I went to college, the first symptoms started to arise in the form of chronic acid reflux and an ever swelling little pot belly.
Despite being a runner, my gut continued to distend and grow over the course of my 20s until my once 5’11” 160 lb runners frame had blown out to nearly 230 lbs. My self image became pretty well shattered. I was frustrated because of my inability to lose weight despite constant exercise, and attempted dieting (though I was always, always hungry).
Right around 2011, I started dropping into bouts of depression, initiated by a variety of things but largely because despite everything I did I never felt good, I always felt sick. My blood sugar would frequently crash, I was catching mystery illnesses all the time, and the doctors would chalk it up to my obesity and “poor” lifestyle.
In 2014 the symptoms started to go neurological, with frequent dizzy spells, and slow loss of motor control first in my left hand, then the left side of my face and tongue and periodic feeling of drunkenness.
Late last year the Gluten Ataxia blew up, until one night, after a quick dinner and couple beers with friends, I spent the evening on my bathroom floor, unable to swallow, choking on my own spit, unable to control my muscles well enough to do anything but crawl across the floor to the toilet, where I had to let the spit just drool out of my mouth rather than what felt like drowning on it.
I’d had enough then of doctors putting me off. I sat in waiting rooms and demanded that they fix me, and eventually they figured it out. My small intestine was severely damaged and I was holding an inflamed mass of water around my gut. The MRI showed lesions on my cerebellum from the Ataxia, brain damage that will never go away and always make my fine motor control in my left hand difficult.
6 months after the diagnosis, and an extreme diet that also rid me of dairy, I do not remember feeling better in my adult life. I’m crying here as I write this. I dropped 30 lbs of inflammation in a month. Though I’m not as skinny as I was, I’m now a much more manageable 190 lbs. Though my diet is limited, I enjoy food in a way I never did before, now free of reflux, bloating and cramping. I am, by every metric, a happier man.
Thanks for the opportunity to let it all out on paper Gluten Dude.
Crazy, right? Brain damage caused by something we eat.
This disease never ceases to amaze me.