Gluten ataxia is a form of gluten sensitivity, a wide spectrum of disorders marked by an abnormal immunological response to gluten. With gluten ataxia, damage takes place in the cerebellum, the balance center of the brain that controls coordination and complex movements like walking, speaking and swallowing. Gluten ataxia is the single most common cause of sporadic idiopathic ataxia.
Article courtesy of: April Peveteaux, Gluten is My B****
Gluten is an asshole.
Those of us who wind up in the pot after a lunch meeting know this, and those of us who came back from the brink of death after going gluten-free know this as well. And after returning from helping to move my mother into a more secure memory care unit in her assisted living facility, I think those who are unlucky enough to suffer from gluten ataxia, really, really, really, know it.
So what is gluten ataxia anyway?
When I first learned about gluten ataxia and connected it to the strange and devastating decline of my mother, I had hope. I did. I now realize that it was too late for that and unlike me, my mom wasn’t going to have a magical recovery simply by following the gluten-free diet.
So we just had to move my mom into the part of the facility that offers 24/7 care, because she needs that now. The last visit with the neurologist, who had given us a diagnosis of post cortical atrophy, confirmed what the nurses and administrators at her facility were already telling us–she won’t be getting better, and she can’t be without assistance at any time.
Even with that news, I can say that I was heartened when I sat down next to her during dinner on the “new” side and the staff brought her gluten-free meal. Not that it seems to matter at this point. Probably. See? I’m still kind of like, “Well, maybe it will help!” Help what? I don’t even know.
We don't know enough.
What I’ve gleaned from conversations, articles and trying to connect some dots with my family medical history and my mom’s symptoms, is that a hell of a lot more research needs to be done in this area. I realize I only went to a state school, but whether gluten ataxia causes post cortical atrophy or if maybe my mom has a gluten sensitivity AND post cortical atrophy, which just happens to have the same effect as gluten ataxia, is unclear at this juncture. But here’s what her symptoms were in the beginning: “jumping” text on a page and objects which creates the inability to read, judge distance, write and walk and sit down in a chair without assistance. Deteriorating coordination, loss of words, decreased memory (dementia) and of course, a hell of a lot of anxiety. These are symptoms of both conditions—gluten ataxia and post cortical atrophy. So.
People with Ataxia know it's happening.
My mom is a private person and even though she isn’t herself—hasn’t been herself in 5 years—I still feel the need to protect the intimate details of this part of her life. What I do feel comfortable saying is this—whatever the definition, this condition sucks. That anxiety I mentioned before? It comes on the minute you realize something crazy is happening in your brain, and it never goes away. Unlike some forms of Alzheimer’s disease, there is no phase where the memory is so far gone that the person suffering does not realize she is suffering. In my mother’s case we’re talking about 5 years of knowing that she’s losing her ability to do the things she enjoys, as well as losing body function, memory, independence and any sort of life that that she once knew. (And about 4 years prior of denial that anything was wrong, even though the rest of us could see it, if not identify what the hell was happening.)
Even now that my mom is in what we can assume are the advanced stages of this (although honestly, not enough research has been done to know what is happening, and when it will be over), she’s still pretty damn mad about her situation. I would be too. Or rather, I am mad about her situation and the lack of knowledge which led to her brain being damaged beyond repair. I have days where I just want scream, “HELP!!!” over and over and post it on Facebook, and tweet it and Instagram it. HELP. But the fact is, there isn’t anything anyone can do. Nothing. Not one damn thing.
It’s easier to be angry than to be sad, so that’s where I’m hanging out right now. Stay tuned. Or don’t, really. It’s a horrible channel and I wouldn’t blame anyone for turning it off.
Gloria Botts says
I too have lived through what you are. It is a living hell. Now I suffer from the gluten sensitivity. I too have wondered if my mother had gluten problems too. She passed away and finally free.The doctors will never make a connection because no one seems to care. My mother's sister is now going through the same and I wonder if I too am destined for the same hell. I wish I could encourage you but as of yet have not had anything to feel good about. I am better since I learned about the gluten but no matter how careful I still get it.Some days it is as if I am paralyzed and can not move. It is robbing me of a fulfilling life. Keep questioning and searching. My best wishes to you and your mother.
Rachel Elwood says
I was touched by what you wrote. I know from experience, it's really, really hard to watch a parent decline. I can feel your extreme anguish in what you wrote. I just want to offer you some hope for the future.
John 5:28,29: Do not be amazed at this, for the hour is coming in which all those in the memorial tombs will hear his voice and come out, those who did good things to a resurrections of life, and those who practiced vile things to a resurrection of judgement.
Rev. 21:3,4: With that I heard a loud voice from the throne say: "Look, the tent of God is with mankind, and he will reside with them, and they will be his people. And God himself will be with them. And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.
So you can see from these two scriptures that God hates pain and death and will do away with them in the near future, even bringing a resurrection of those who have died, as we see at John 5:28,29. I hope this helps to bring comfort. And if you'd like more information, you can contact me, or go to http://www.jw.org
Hope that helps! Hang in there!
Christine Spindel says
I was so moved by your mothers story! Thank you very much for sharing her story! I was in my third coma from not being diagnosed with Celiac Disease after about 8 years of seeking a diagnosis other than "wasting disease". I went to the Mayo Clinic as well as 9 doctors in the Las Vegas area that I can confirm because I still had their business card. When an Intern diagnosed me from having recently read an article on Celiac Disease, I finally came out of my coma. This was only 6 years ago!! Really!?!? I thought I was losing my mind! People told me the things I said and did that I know I never would have done as a healthy person. I do suffer with memory issues and pain from my head, neck, shoulders to mid back daily due to the lack of nutrients I lacked during my undiagnosed 8 years. I am blessed to have finally been diagnosed but at the age of 54, I wonder who I could of been. I lost my business and all my creativity I had prior to the comas is gone. I feel intimidated by almost everything. Your mother is blessed to have you! Your journey now is a tough horrible part of your life that wouldn't have happened given a proper diagnosis. I heard some people at the grocery store the other day comment on all the gluten free things on the shelves taking away from all the great things they could be eating. "What is gluten free? I never heard of it before and now it's everywhere because people want to lose weight or eat healthy. It's just another fad and in a couple of months it will all be gone and the store can go back to being normal." Ignorance is so hurtful sometimes...