Tuesday Night Ramblings

I’ve been keeping low key an issue I’ve been dealing with for the last 7-8 months, but now that I think I finally have some answers, I feel more comfortable sharing it openly.  Last summer, I started noticing a lot of unusual trembling and shaking in my left hand, and occasionally I would get a severe cramp in that palm which would draw my fingers together into an intensely painful knot.  Then, I started noticing that the coordination in both my hands was deteriorating, to the point that both typing and handwriting required tremendous amounts of concentration.  My balance and equilibrium also started to erode.  Ever since my accident, my equilibrium has been a little off, but by the end of summer/beginning of fall, just walking required a lot of effort.

For a couple of months, I ignored the symptoms, hoping they would go away, but by mid-September, things had gotten so bad, I had to accept it and face it head on.  At first, I really thought I had Parkinson’s.  People who have suffered severe head trauma are 11 times more likely to develop it than the general population, and when I read the ten warning signs of the disease, six of them matched what I was experiencing.  Fortunately, it was ruled out by three different doctors fairly quickly.  The downside was that none of them could tell me what was going on. By mid-October, I had developed random muscle spasms all over my body.  Sometimes, they were faint, other times intense, and there was no predicting when or where they might occur.  By that point, I was also feeling indescribably bad.  The closest I can come to describing it is that I quite literally felt like I was dying.  It took everything I had to get out of bed, up the stairs, in the shower, and to work.  By noon, I was so exhausted, I could barely concentrate, and even mundane tasks, like grading an essay or preparing a lesson plan, tasks I had performed thousands of times, took everything out of me.  At one point, I was so scared, I actually wrote letters to my sons to be given to them when they’re older in case I was dying.

The neurologist I was seeing ran test after test after test, and all of them came back normal.  After reading her dictations, I don’t think she ever took my symptoms seriously and truly seemed to dismiss me as some kind of hypochondriac.  Those of you who know me well should know that it takes a lot for me to even go to a doctor, and I’ve pushed myself and worked through all kinds of injuries and illnesses over the years.  Fortunately, my primary care physician did take me seriously and never treated me like I was imagining anything.  He’s a good doctor who has earned my respect for his compassion and kindness.  He knew I haven’t been faking anything or seeking pain meds or trying to file some bogus disability claim.  From the beginning, all I’ve wanted were answers.

Sometime in late November/early December, I had a long conversation with my cousin who has been diagnosed with Celiac Disease, and she convinced me that because of our family history, I should consider that I might have a sensitivity to gluten.  When I got to thinking about it, over the last couple of years I had begun to add breads, especially whole wheat, and beer back into my diet.  For several years, because of avoiding carbs, I had almost completely eliminated gluten by default.  Desperate to get better, I eliminated it from my diet again.  For the first few weeks, I didn’t really notice any difference, but then, sometime in mid-January, I realized that the muscle spasms had vanished, and much of the trembling had dissipated.  Also, that terrible feeling of dying was completely gone.  In short, I feel like I’m on the mend.

Today, I saw a GI specialist, and while the results of the blood work haven’t confirmed anything yet, he told me that gluten sensitivity can create a myriad of neurological symptoms by depositing a kind of plaque in the brain.  He also affirmed what I had begun to suspect, that I was already my own double blind study.  8-9 years ago, I eliminated gluten and got healthier.  Then, I added it back and got sick.  And he warned me that if I added it back again, the next time the symptoms would probably get even worse.  There are no guarantees that some of the neurological issues won’t already be permanent, but I should know in 4-5 months just how much I will heal.

While I won’t say I feel completely healthy today, I feel well enough to function, and I can live with where I am now, even if I don’t get any better.  Four months ago, I thought I was dying, so I’ll take it.  To those of you who already knew much of this, thank you for all of your support and concern.  For those of you who didn’t know, please understand that I didn’t want to make this widely known until I had some answers and knew what I was facing.  Again, nothing is fully confirmed, but I’m fairly certain I’m on the right track.  As I learn more, I’ll share more information, and I’ll try to write a few entries detailing the effects gluten can have on a neurological system.  Until then, cherish your health and nourish your body.

3 thoughts on “Tuesday Night Ramblings”

  1. Wow, what a heavy load you have been carrying. I am glad you are at least feeling better and hopefully that really was the cause.

  2. Hi D,

    Very, very happy to hear this. I can’t believe that something so simple could have such horrid side affects, or that it should be so difficult to diagnose. I can never decide if I love modern medicine, or if we have a loooooong way to go. Here, I thought carbs just made you fat ;(.

    Thank you for sharing this, you never know who it will help. Concentrate, my friend, on getting well.

  3. Thank you for sharing. Your cousin has been talking with me about this for awhile. Although I work on my carbs I need to work on gluten to see if this is my issue as well. I have a doctors appointment in two weeks and I am going to ask for some bloodwork to see if they can help in diagnosing my condition. I have many issues at this point and I am in a lot of pain.

    Thank you again for sharing.

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