What celiac disease is really like


What it's really like to have celiac disease | InspiredRD.com

I’m mad.

And sad.

And frustrated.

And ticked off.

Mad at myself.

Mad at this disease.

Mad at those who call my disease “trendy”.

Two weeks ago, I was “glutened” in a restaurant.  I went through all the right steps, asked all the right questions, and still got sick.  Halfway through my meal, I felt the tingling in my brain telling me gluten had entered my system.  Crap.

I decided to write down my symptoms as they happened so I could give you a better idea of what I go through when that happens.  Not all celiacs react in the same way.  In fact, most of us are very different.  But for me, here’s how it goes down.

Immediate reaction: Tingling brain, pinching sensation in my brain, chills, trouble focusing my eyes, trouble focusing my thoughts, trouble getting complete sentences out.

Lingering symptoms (up to 2 weeks) Headaches (constant the first 2 days, then right after meals), swollen fingers, short temper, burning scalp, hot flashes, upset stomach, fatigue.

Today I was finally starting to feel some relief.  And then…

I freaking glutened myself.  Me, the over-careful, million questions for the restaurant manager, bring-my-own-food girl glutened by my own carelessness.  Glutened with a handful of popcorn.  Popcorn that Trader Joe’s proudly touts as “g+” meaning “no gluten ingredients”.  It’s not Trader Joe’s fault.  I love Trader Joe’s.  It was my fault for not turning the package over as I always do to search for those magic words, “processed in a facility with wheat”.

I don’t know why I didn’t look closely at this package when I’ve inspected every singe bit of food over the past year with a microscope.  Maybe I was tired of being so careful.  Maybe I just wanted to feel normal.  I don’t know.  But I do know that a handful of that popcorn sent me right back into feeling like hell.

My brain started tingling, and I couldn’t get rid of the headache.  I couldn’t figure out how to drive through a construction zone.  My brain wasn’t quite right.  I got the chills.  I was scared to drive home with my little Leila in the car.

I came in the house and started wondering what was going on with me.  Why am I reacting this way?  I didn’t eat anything weird, just my leftover frittata and a banana.  What was going on?  Then it hit me, the popcorn.  I ran to the pantry and turned the bag over.  My heart sank.  I glutened myself.

No waiter to blame, no food company to get mad at, it was me.  All me.

I sat on the bed with tears streaming down my face.

Why did I think this was going to be easy, this celiac living?  How could I have celebrated my diagnosis?

I’ll tell you why.  Because they said it would be easy.  “Just cut out the gluten, and you’ll be fine.”  “It’s not a big deal, there are thousands of gluten-free products these days.”  “You’re lucky you were diagnosed now and not 10 years ago!”

These weren’t celiac patients telling me these things.  These were medical professionals.  Doctors, nurses, dietitians.  All, apparently without the disease themselves.

The truth is, celiac disease is hard.  It is SO hard.  I’m a freaking dietitian and I can’t even handle it.

A friend asked me last week if I think I will ever have peace with my disease.  I told her I hope so, but I’m not sure what that looks like.  This is something I have to think about every time I put food in my mouth, lotion on my hands, chapstick on my lips.

So I’m going to let myself have a pity party tonight, especially knowing I have a week of headaches and hot flashes to look forward to.  But I refuse to let this all be negative.  My prayer is that by sharing my story, I can open your eyes to what it’s really like to have celiac disease.  If it’s this hard for me, a nutrition professional, think of how hard it is for those who’ve never even heard of this condition.

I hope my story helps you understand what a friend or family member goes through.  Though we all suffer differently with celiac disease, we all suffer.


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