HLA-DQ 1,1

I should have paid more attention in High School biology. It might have helped. It might not have. I'm awash in a sea of DQ's and I am fighting for every bit of understanding. The more I read it the more I glean from it, but the definitive answers I want don't appear to be there.

I took a gene test to determine which gluten sensitive genes I posses. I've seen estimates that as much as 60% of the population has one or more of the genes. Problem is they just aren't sure what it all means. They have some idea that certain genes are worse than others, and they've begun to understand that different genes can cause different symptoms and present different challenges for gluten sensitivity. But the science is far from exact. I have two copies of a gene they seem to be calling HLA-DQ 1. I say seem to because apparently even the protocol for naming genes is an ever evolving one. Everyone has sets of genes, with one gene in the set coming from their mother and one from their father. I received the very same gene from both of my parents; the DQ 1. According to the literature a double DQ 1 gene means the sensitivity is more pronounced and probably unavoidable. It is a gluten sensitive gene and it's most associated with gluten ataxia. Ataxia is a word I didn't know until today. I could probably have gone the rest of my life without hearing it.

I read today about something they call the Romberg Test for Ataxia where a patient stands with their feet together and their eyes closed. That's it, that's all. I read the description of that test and immediately thought, "Well, no one can do that." Well, actually most people can it turns out. But I have never been able to. I'm better than I used to be, but standing with my feet together and my eyes closed I start to wobble and run the risk of falling over. Hell, it's a miracle I haven't fallen off my treadmill yet my balance is so terrible. My balance has improved in the last two years, but it's obvious even to me that some things are never coming back. They know that a gluten free diet improves balance and coordination in affected people, but they don't know whether or not it can reverse all of the damage that's already been done. On the up side I don't fall down anymore so I guess I should be grateful.

But the part that got to me, that freaked me out is that gluten can actually change the cerebellum, leaving deposits and changing the shape and function of the part of the brain most responsible for balance and movement and coordination. This freaking gene and the subsequent gluten sensitivity has altered the very make up of my brain. There are mentions of links between ataxia and Alzheimer's and dementia as well as schizophrenia MS and several other things.

Maybe it's just me. Maybe I live in my head too much. Maybe other people don't. I don't know. There's this huge disconnect between my thoughts and the fact that I'm a physical being dependent on things like the structure of my brain for cogent thought. I'm anchored to this body and that's a hard thing to process for some reason. I can't transcend the physical body. I'm bound by its health and abilities. And that makes me angry.

More than that it scared me, more than anything else on this journey through gluten hell has. And I'm mad. And I'm confused by all the uncertainties. And dammit none of this makes sense. Why me. But of course me.

Someone somewhere posted a snip from Slaughterhouse Five this afternoon on a local website.

Tralfamadorian speaker: We know how the world ends and it has nothing to do with Earth, except that it gets wiped out too.
Billy Pilgrim: Really? How does it end?
Tralfamadorian speaker: While we're experimenting with new fuels, a Tralfamadorian test pilot panics, presses the wrong button, and the whole universe disappears.
Billy Pilgrim: But you have to stop him. If you know this, can't you keep the pilot from pressing ...
Tralfamadorian speaker: He has always pressed it, and he always will. We have always let him, and we always will let him. The moment is structured that way.

What is meant to be will be. You can't go back and change it, and even if you could it would do no good because what's meant to be will always find a way in the end. Everything has a point and purpose.
But accepting that is a struggle.