Monday, January 31, 2011

Good news?

For the last several years my seizures have been slowly getting worse: more frequent, mostly.  And after the grande mal in September where my husband had me sent to the hospital via ambulance, terrified that I was about the die and leave him with three small children, I reluctantly agreed to put a little more effort into finding out how to control them.

Because none of the medications that I have been prescribed have ever worked, I decided to follow the advice of a second-cousin in Colorado whom also has seizures and start avoiding gluten.  So, in October, I gave it up.....Finally, but the third week of November, my seizures had ceased completely.  Really?  Stopped?  I was so confused.  I'm so used to having seizures that to go for a day....or two....or a week without having them made me nervous.  I decided that the connection may have been a coincidence and ate some pie for Thanksgiving.  Ten minutes later I had a seizure.  And kept having them.

Okay, I was convinced, it was the gluten.  I hate the idea of following what sounds to me like a 'fad diet', but I couldn't argue with the results.  The difficulty was always remembering to think about what I was eating.  It was easy to avoid bread and noodles, but this meant I couldn't eat our family Saturday morning pancakes.  Or flour tortillas with our Sunday lunch burritos.  I had to change my recipes for chicken enchiladas and not use canned cream of mushroom soup in casserole.  I couldn't eat packaged french fries.  Or the onion soup mix that I use in marinara sauce.  I even had to make up my own taco seasoning.  But the kicker came one Sunday when I realized that I couldn't eat the bread at communion. Gosh, that's not sacrilegious, is it?!

But the best day was when I was rereading through some year-old magazines and there was an article on neurology and celiac disease. The neurologist that was interviewed says "If you look at neurological'll find a higher than expected percentage of these patients have celiac disease.  Some syndromes, like epilepsy with calcification in the brain, are definitely linked to celiac disease."

A-ha!  There was a tie-in!  I have had a calcium deposit on the back of my skull since I was born - my parents were told that it was related to my birthmark (Sturge-Weber syndrome).  But no one had ever told me that it was any more than that.  But here was the link - those annoying seizures were linked to my calcium deposit that were directly linked to eating gluten.  Amazing.  The thing I thought was so benign was actually the cause of my most obvious problems. 

I also was reading about something called gluten ataxia, which is when a person's gluten consumption leads to their clumsiness.  I tried to pass this off on my husband as the reason for my lack of grace in movement, but he wouldn't buy it.  Phooey.


  1. Wow what an eye opener. I am with you in that I've really only considered gluten-free to be a fad diet and I really know nothing about it or why people choose it. And from the sounds of things it's an ingredient in everything!

    I'm really glad something is working for you though! It must be nice to feel you have some control.

  2. I was browsing a blog and they had a link and blah blah blah and I found this that might be of interest to you: