I Know Hope

This is how I carry on: I know I only have to reach a few of you.
Then you will do this yourselves. And you will do better than me.
Some of you still have the ability to write proper sentences...

Hi Heidi -

I've been plagued by excessive daytime sleepiness, gradually increasing in intensity and frequency, for a few years now.  I've also experienced cataplexy over the same period, again increasing in intensity, most often invoked by sudden anger (secondary triggers are anything which prompts an emotional 'surge' such as telling a witty joke on impulse and getting a laugh from people).  My cataplexy bouts are usually a couple of seconds long and consist of a 'buckling' of the knees and neck and loss of facial muscle control (noticeable by others). 

My EDS had gotten to the point where multiple times per day I would find myself being 'pulled under.'  Frequently at work I would fall asleep at my desk or have to go sleep in the restroom for a few minutes.  I have a long commute to work (1 hour) 3 days a week, and my route is pockmarked with my 'nap spots' where I will pull off when drowsy, which is always.   I have splashed cold water, and smacked my face repeatedly to wake up, more times than I can remember.  It was my norm.  My girlfriend called it my curse.  It was ruining my life.

My PCP ruled out all things blood sugar related; glucose testing results were normal, thyroid function normal - I'm not diabetic or hypothyroid.

My symptoms had gotten to the point where I was ready to pursue the diagnosis so I could seek stimulant medication.

I was incapable of going to the movies or watching a great TV show because I would always fall asleep.  It happened to me all the time and was more pronounced after (most) meals.

In September of 2011, I quit smoking and embarked on a diet and exercise program.  I began eating and living HEALTHY.  Counting calories, no artificial sweeteners, lots of complex carbs, and, yes, lots of whole grains.  I figured, well, hey, this might help my sleepiness too.  However, it got worse, by a lot (and yes, I included lots of whole wheat as part of my diet and exercise program, much more than I had been eating previously - go figure).

When I decided to try eliminating things from my diet, I started with gluten because I found a few indications online that people had had gluten-related fatigue problems.

That was 3 weeks ago.  OH MY GOD.  My life has changed drastically in such a short time.  I have had a total of 5 sleep attacks since going GF (as opposed to at least that many PER DAY previously).  3 of these were within the first 2 days.  I have not had one in a week and a half.  Episodes of cataplexy are noticeably decreasing in intensity.  I had one last night, with a normal (for me) trigger, and it was maybe 30% of the intensity of my 'normal' attacks.

The eczema on my hands and feet, which had been getting progressively worse and worse, has immediately begun to recede, like weeds that have had roundup sprayed on them.  Now, after 3 weeks, it is barely there, and does not itch at all.  This is after fighting this particular symptom for more than a year.

But the biggest, and most amazing change, is the removal of the fog from my brain, and the miraculous boost in energy levels.  I feel like me again.  It happened so gradually, the loss of my mental acuity, that I hadn't even realized it was happening.  All of a sudden I feel like I'm HERE.  I feel snapped back into reality.  My skin looks healthier.  I am waking up easily in the morning.  I am so ecstatic, so giddy, I can't even begin to describe it.  And it's getting better every day.

I didn't find your website until a couple of days after going GF and looking for more supporting data, and your theories and testimonials (on zombieinstitute) provided much-needed validation and affirmation for sticking to my new diet.  So thanks for that :-)

I figure you'd like to hear about it when somebody makes this connection and personal breakthrough, so I wanted to share this with you.  I will never touch gluten again.  I'm not clinically diagnosed N with C or celiac, but I know what I had, and I know what fixed it.

I never had any "classic" celiac symptoms, except for maybe excessive bloating/gas.  But no IBS or anything.  Just sleep.  Just fatigue.  Ever-present and exacerbated by the consumption of gluten (I know now, in hindsight).

I feel like a new man, and I have a new lease on life. 

Andy in Sacramento