Tag Archives: celiac

Saturday Afternoon Ramblings


It began as a small tremor in my left hand, nothing major, just an occasional annoyance.  Over time, it morphed into a severe cramp that drew the fingers of that hand into a tight knot, not as painful as one might expect but certainly unpleasant.  Then, I started having difficulty with balance and walking.  Sometimes, I would fall for no apparent reason, and just walking from my office to the classroom took every bit of concentration I could muster.  I started having random, bizarre muscle twitches all over my body.  Sometimes they lasted a few seconds, once nearly an hour.  By mid-October of last year, an overwhelming feeling of death descended on me.  I wasn’t in pain, but I felt as if my body were failing.  From these symptoms, I feared the worst outcomes: MS, Lou Gehrig’s, Parkinson’s, or a brain tumor.  Of course, I sought help and started seeing a PMC physician and a neurologist.

Let me say most importantly, from the beginning, Dr. Kenneth Justice of Parkway Medical treated me with compassion, concern, and understanding.  Each visit to his office, he reassured me that we would find an answer, and he never once made me feel like a hypochondriac or someone faking an illness.  Even as test after test revealed nothing, he continued to believe that what I was experiencing was real.  I am grateful for how he treated me throughout the ordeal.  He even called me one evening, after office hours, just to see how I was doing.

The same cannot be said for Dr. Karen Mullins at Knoxville Neurology Clinic.  Never in my life have I met a doctor and a group of medical “professionals” so unconcerned for a human being’s health.  After reading her dictations, I am convinced that she never once took me seriously and dismissed my issues as either imaginings or some attempt to scam the system, despite my repeated claims that I only wanted to find out what was wrong with me, never once asked for any kind of medicine, and insisted that I had to get well enough to function in my job.  If you ever need medical assistance for anything, don’t waste your time with Knoxville Neurology Clinic or Dr. Karen Mullins.  They are the worst collection of half-assed, pretentious, unprofessional jack-wagons I’ve ever encountered.  At some point in the near future, I will be writing their office a letter expressing my disdain for their incompetence, and it will not be a pleasant correspondence.  I was desperately ill and needed help, and they ignored the totality of what I was experiencing, instead focusing on some nerve damage in my left arm, an issue I’ve lived with for years without complaint.  If a damaged ulna nerve can cause muscle spams in the abdomen, I guess I really don’t know anything about the human body.  Yes, I’m bitter and pissed off at how they treated me when I was scared out of my mind that I was quite literally dying.

On Thursday, I received absolute confirmation of what I’ve known since late January/early February.  I have a sensitivity to gluten that created a myriad of neurological symptoms because of my immune system’s attempts to fight off the reaction to the protein.  I’m not a doctor and won’t attempt to describe the complexity of how this works, but my blood work confirmed that I have this issue.  The good news is that since I’ve eliminated gluten from my diet, most of the symptoms have completely vanished, and the ones that linger are much diminished.  I need to thank Dr. Limas Adams for taking me seriously and identifying the issue.  I also need to thank my cousin, Janette, for pushing me to consider gluten as the culprit.  Without them, there’s no telling how bad and permanent things could have gotten.

Today, I feel pretty healthy.  As I’ve said before, I certainly don’t feel nearly 40.  My balance, which has been an issue ever since my head injury, is as good as its been since the accident.  My typing is much improved, though I still have some issues with fine motor skills.  Overall, I feel pretty good.  Sure, I miss certain foods, like pizza and chicken wings, but if eliminating those from my diet is what it takes never to feel the way I felt last fall, I think I can endure the sacrifice.  If you have unexplained medical issues and cannot find any answers, please consider looking into gluten sensitivity, sprue, or Celiac.  Some doctors are more knowledgeable on the subject than others, but Dr. Adams is an expert.  If you’re in East Tennessee, I highly recommend him.  Below are a couple of links to get you started learning more about this issue.  There are plenty more if you do a simple Google search.  That’s all for now.  I have a book to finish before the semester begins.

http://www.csaceliacs.info/

http://www.emedicinehealth.com/celiac_sprue/article_em.htm

Wednesday Afternoon Ramblings

Not three months ago, I could barely climb a flight of stairs without feeling like I was going to fall.  My left hand was nearly unusable from the trembling and twitching, and by noon each day I felt so exhausted from having to concentrate on mundane tasks that I could barely get through the rest of the day.  Three months ago, I literally thought I was losing the ability to function and possibly even dying.  It was a terrifying experience.  Those who really know me know I’ve never been a hypochondriac, and many of my students and colleagues verbalized how haggard I looked.  Some expressed outright concern for my life.  Just three short months ago.

Nine months ago, I could work from early morning until late evening, doing hard physical labor, but then still have the energy to write.  Sometime around mid-July, I started noticing that my left hand was bothering me, and by mid-September, I had all of the symptoms listed above.  Nine months ago, I felt healthier than I had since I was a teenager, and within a couple of months could barely function.  It was a wild roller coaster ride, believe me.

Monday, I sat looking at the nearly full acre of land I had cleared over the previous four days.  Using both hands fairly well, I handled a chainsaw, loppers, and a walk-behind brush cutter.  I carried logs that easily weighed fifty pounds each across the acre to the burn pile without losing my balance.  In three short months, I went from barely able to climb stairs comfortably to able to traverse uneven ground with a heavy load.  If that’s not an amazing recovery, I don’t know what is.  While I don’t quite feel 100% normal, I would now put myself somewhere around 80-85%.  I can function relatively normally without having to concentrate so much on handwriting or typing.  My minds feels less sluggish.  My legs no longer feel welded to the ground.  And I feel like I’m living again, not dying.

The only major difference in my daily life over the last two to three years has been the consumption of gluten.  For many years, I had practically eliminated it from my diet.  Then, slowly, I started reintroducing it, thinking I was making healthy choices by eating whole wheat breads and multi-grain pastas, but probably the single biggest source of gluten for me was beginning to drink beer again.  I love to have a cold beer or two after a hard day.  I almost never drink until I’m drunk, but I do enjoy the flavor of a good beer.  For the first 30 years of my life, I consumed gluten with nearly every meal and became very unhealthy.  For 6-7 years, I all but eliminated it from my life and became very healthy and energetic.  Then, I added it back in and within a year became so sick I thought I was dying.  Now, a mere three months after eliminating it from my diet completely, I’m on my way back to health.  I don’t need much more proof than that.

My point of all of this is that if you are experiencing unexplained health problems and your doctors can’t seem to find an answer, please find a specialist who really understands gluten sensitivity.  I am walking, living proof of the perils it can pose to one’s health.  Living without gluten is not nearly as hard as you might think, and the positive benefits far outweigh the small sacrifices in comfort foods.  Even if your regular doctor scoffs at gluten or Celiac and tells you it couldn’t possibly be that, please find a specialist and get a second opinion.  It quite literally could be the difference between living an active, healthy full life or feeling your life drain away from you.

http://www.celiac.org/

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.