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The Frantic Search for Serenity

 

I know I have an irrational sense of urgency about all this.

Thereís a reason.

 

 

Dear Nephew:

 

I know you think nobody knows what youíre talking about.

That nobody understands.  Everyone thinks youíre crazy.

And in general, youíre right, most people donít understand.

 

But I do.    I understand WAY better than you do.   And Iím not going to bullshit you-  tell you a bunch of crap about your dysfunctional family or bad attitude or your lack of motivation.   You are not crazy.  You are not stupid.  You are not immature.  You are not a loser. 

You have a real problem.  You are allergic to gluten and itís affecting your brain.

 

This is how it works:

When you eat gluten your body makes antibodies and sends them out into your bloodstream.    Your antibodies happen to have a section on them that binds to neurons and clogs them up.  The neurons that seem to be affected most produce a chemical called orexin.  

Orexin does a lot of things but two of the main things it controls are parts of your brain:  your cortex and amygdala.

When orexin levels lower, your amygdala activity goes up.  The amygdala controls the stress response.  It stimulates adrenaline production.   This amplifies all your senses and emotions.   Everything you experience is cranked up.

Unfortunately, at the same time, the cortex of your brain- the part you use to think- slows down.   That doubles the problem.  You do not make enough neurotransmitters in your cortex to deal with everyday life, much less a world where everything is distorted.  And that has a lot of predictable effects. 

 

And I know all about them. 

 

You DO feel different than other people.    That is NOT your imagination.

You feel more anger.   You feel more loneliness.  And you really are much more tired than most people.

 

You ARE different than your family.  They are gluten intolerant, but you have it worse than them.   You got a double dose.   One from each side.  Your fatherís family has it too.

You arenít unique if you look at your extended relatives, though.  

I have a double dose.   My grandmother had it bad.   Your Aunt Mary did too.

 

Thereís lots of other people like us too.   My guess is about 1 in 10 right now.    At least ten percent of people exhibit sleep disorders, anxiety and depression:  symptoms of serious orexin deficiencies.

Thatís why you feel more comfortable around your friends.    They are people who have similar problems.    They ARE more like you than your own family.  

Trust me thereís lots of us.  

The misfits.  The black sheep.   Thatís how we describe ourselves.

 

I know that most of the time sleeping is better than being awake.   That sometimes your dreams are more real than reality.   You are not lazy -  thatís a sleep disorder- a symptom of  really low orexin levels.   Your body  is asleep but your amygdala is so active that your brain stays awake.   That is not normal.  Itís like having an anxiety attack in your sleep. When itís really bad you have nightmares and thrash around.

 

I know that you are infinitely lonely.  Crave constant companionship.  

Thatís your amygdala too.  It creates fear.   And the most basic fear is being alone.

 

I know that drugs actually help.   Caffeine and nicotine anyway.

Youíre not a loser or an addict-  thereís a reason youíre smoking and getting high.  They are psychoactive chemicals.  Youíre trying to stimulate your cortex and increase your neurotransmitter production because your brain is shutting down from the gluten.  If you donít eat it, you wonít have the urge to self-medicate.

Alcohol calms down your amygdala, but it slows down your cortex even more.   Use it only after your work for the day is done. 

 

I know all about the anger management problems. And  I know you have them too.    I have seen you get agitated and turn red and run out of a room.   That feeling that your head is going to explode-  that is your amygdala dumping adrenaline into your nervous system.  

More than that, I know exactly how angry you are when this happens.   You might just get up and leave the room, but I know you obsess about revenge.   Getting even.   I know you do.  That simmering rage is a symptom, too.

The wicked urge to retaliate is the worst one.  It will eat your soul.  

 

I also know that you actually care MORE about important things than other people.   You are more ethical and conscientious and charitable than other people.  You  just canít follow up on your good intentions because you freak out somewhere along the way.     And the  amped up disappointment and humiliation is unbearable. It makes you want to die.  I know that too.  Yeah, I know a lot about that.

 

I can tell that itís getting pretty bad now too.

I was the same way at your age.   I had already dropped out of college for a while.   Couldnít keep a job.  Up all night, sleep all day, bitchy all the time. 

The reason you are feeling so bad now is because you have probably killed about half of your orexin cells already.  The other half are clogged up most of the time.  You are on the tipping point of constant orexin depletion.  

 

I also know it doesnít get better.   You donít ever  find a way to live with it.   As a matter of fact it gets worse.   You donít just leave the room.   You leave the house.  You leave town.   Or the state.   Or move across the country to try to escape everyone and everythingÖ

But the misery follows you everywhere.  And when it gets really bad- in a few years when youíre broke again and unemployed again and divorced again and really far from home and your brain and everyone else tells you that your life is a wreck because you have never done anything right and that you deserve any and all negative consequences- You will believe it.   You will think itís real.  In reality- your life is uncontrollable because your brain is poisoned.   Every day the brain damage gets worse, your anxiety gets higher and you are less and less able to deal with the overwhelming stress and accumulating failuresÖ

 

And then some day almost all your orexin cells will be gone.   And your amygdala will be ON FIRE.  But you wonít be able to run away or even move at all because of the agony.   You will only be able to  lie on the floor and beg for someone to come and kill you.  But they wonít.    And for the rest of your life after that you wonít be able to metabolize alcohol anymore.   Or sugar.    You think your suffering is bad now?    You havenít experienced THAT day...  or all the excruciating, fat, sober ones that come after it.

 

But the one thing I know best of all...

I now know you can control it.   You can prevent it and control your brain.

I do it every day.

 

I understand that nothing seems to help and everything seems futile, but I swear this works. 

I spent the last 15 years of my life trying to figure it out.

I can turn it on and off like a switch now.

 

My brain is so fried, if I eat even the slightest bit of gluten I will be in a complete panic in a few hours.  My head will pound and my skin will feel like fire.  I will feel infinite futility and total despair.  I will scream horrible things at Jeff, slam doors, get in my truck and try to run away from my life.  I will want to kill myself and wonít care if I harm others.  Thatís how extreme it is.

 

I have done it over and over.   I have walked out on school and jobs and family and  friendships and marriages and every responsibility or commitment I ever had.  

And if I eat gluten, I will do it again.

 

Itís not in my head.  Itís in the damn bread.

Dr. Jekyll and Mr. Hyde.

 

Itís just like a drug.   No, itís worse than drugs.

This is an illness.   Itís just like giving yourself the flu every day.  You poison yourself and your immune system goes crazy and it makes you tired and cranky.  And it kills your brain cells.

 

Itís like having an asthma attack in your brain.   Yes, thatís it exactly.

You canít tell youíre sick because youíve never been clean. Never.   The antibodies last at least a week, and I guarantee youíve never gone that long without wheat.

 

It doesnít matter how smart you are either- you cannot think your way out of this.   You cannot even think around it-  it takes over your mind.  Even when I KNOW Iíve been glutened I still turn into a sobbing hysterical bitch. 

 

This is a matter of biology.     A metabolic disorder.

For example- we have weak pigmentation-  so we canít stay out in the sun or our skin will fry.  This is the same thing.  We cannot tolerate gluten.    It frazzles our brains.

 

I know not eating gluten sounds awful and difficult.

But itís worth it because it makes EVERYTHING ELSE EASIER.

 

Hereís the math:

If you eat gluten, you will never be happy no matter how hard you try.

No matter what you do, become a world famous brain surgeon or instant billionaire or whatever-   it will NEVER be good enough-   you will still not make enough neurotransmitters to be happy about it.   You will lie in bed and cry.

If you stop eating gluten, you will make more orexin, your amygdala will calm down, your cortex will be able to keep up, and you will be content with no effort at all.   It will just come automatically.   Just like everyone else.  No bullshit.   Itís amazing.

 

 

Think about it.   Itís the only body and brain youíll ever have.

You might as well learn how to live with it.

 

 

Most Sincerely Ever-

Aunt Heidi

 

 

 

 

Update:  Since writing this, I have realized some of the manic behaviors (insomnia, rage attacks) are actually symptoms of a comorbid strep infection.  Nonetheless, the gluten free diet reversed the narcolepsy and saved my life.

 
 

 

    
 

 Big Fat Disclaimer:  The research on this website has not been peer reviewed in any way.   The conclusions presented are strictly the opinion of the author.  It is being self-published as a public service in consideration for sufferers and as a stimulus to the medical research community.  Information presented on this page may be freely distributed or copied. 

Appropriate credit is requested.

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