Happy Gluten Free Anniversary To Me!

It's been a year. 

June 1st of 2011 was the day of my endoscopy.  It was the day I decided to give up gluten, before I even got my test results. 

It was the start of a new life.

Within days of eliminating gluten from my diet, I started feeling better.  I could not believe how the seemingly unrelated health issues that bothered me for years started to resolve themselves-- just by changing my diet.  By time I went back to see my gastrointerologist, I didn't care what the endoscopy said. 

"I know you just told me I have a life long auto-immune disease, but thank you." I said to my doctor when he confirmed that I did, indeed, have celiac disease. 

He looked me square in the eyes, stared at me for a minute then said, "You're not crazy." 

I almost started to cry.  I had been told nothing was physically wrong with me for so long, that I was starting to believe it was all in my head.   

I started coming out from under a fog a year ago and I never want to go back. 

I never want to go back to:

• Constant fatigue
• Snoring
• Chronic sinus infections
• Sleep apnea
• Unexplained weight gain
• Aching joints
• Endometriosis
• Irrational food cravings
• Feeling hangry (a bad mix of hungry and angry)
• Dry eyes
• Itchy scalp
• Yearly strep infections
• Mouth ulcers
• Puffy face
• Brain fog
• Backne (you know, acne on your back)
• Hair loss
• Chronic rash on my chest
• Bloated stomach

All of these issues cleared up or started improving as soon as my body cycled out the gluten in my system. 

I'm still recovering from being dismissed and discounted for so long. 

I'm not going to get back the fourteen plus years searching for what was wrong with me. 

But I have this year and the years ahead of me.  I have the knowledge of what 'healthy' feels like. 

It feels pretty darn good! 

I've had immeasurable support from my family and friends these past twelve months.  I have seen continued resistance from those trained in Western medicine; doctors refusing to hear that celiac disease doesn't always follow their flow chart to digestive symptoms. 

This has been a year of learning, healing, trials and triumphs. 

It's been a good year.

Do you remember when you first went gluten free?  Please share your journey with me.

Ball in Play

Here's the playing field: Mexican restaurant on a quiet Sunday, large group of people.  The restaurant had a separate gluten free menu.  I explain to our server that I can not tolerate any amount of gluten.  He was very reassuring and attentive.  I asked about the tortilla chips on the table:

"Are the ingredients gluten free?"  Yes.
"Do you fry them here?"  Yes.
"Do you have a dedicated fryer?"  Yes.
"Does anything else go in the fryer with the chips?"  No.  No, we don't fry anything else with them.
"Are you sure?"  Yes.
"Are you positive nothing else goes in the fryer?"  Yes.

So, I ate the chips with measured glee.  The green salsa was divine--tasted like it could have had pineapple in it.  And then out of left field I see our server heading for me like a baseball player diving for a line drive.

"Stop eating the chips!  Don't eat any more chips!"   He said breathlessly.  Apparently the chip fryer was a shared fryer.

How'd the ball get dropped?  I don't know.  Sometimes they just get past you.  But you still have to pick it up and try not to let it mess with your head. 

"Do you think you got glutened?" asked my friend. 

All I could think was, "I don't know.  I don't want to be.  I'm not going to be.  If I am, I'm going to muscle my way through it like I have for the past fourteen years before I knew I had celiac disease.  And the last thing I'm going to do is talk about it at a dinner table full of guests."  I smiled through and maybe I laughed a little too loud at jokes but I didn't enjoy the rest of my meal.  I just couldn't.

That was five days ago.

I did pretty well.  I almost faked myself out.  I blamed my irrational thoughts and irritablity on my hormones.  I blamed my fatigue on the fact that our a/c had gone out.  I blamed my itchy skin on the pool water.  And I tried really, really hard to ignore the nagging pain that was getting worse under my right rib. 

I dropped the ball.  I let myself be glutened.  So I took a little dirt-nap?   I'm brushing myself off and getting back in the game. 

I'll go back to the play book and see if I can make some different calls next time.

Look at ME! I'm Trendy!!

It's taken me years but I'm finally 'trendy'!  I've tried so many times to be 'hot'.

I wore Shirley Temple dresses with bells sewn in the petticoats when other kids had Garanimals.  It didn't take off.

I had some of the first round framed, over sized Photo Sensitive glasses.  I just knew everyone who made fun of them was jealous!

I wore a 12 pound body cast for the first nine months of my high school career.  Not a single classmate tried to copy that fashion statement.

Even as adult I was sure my macrame shoes and unique dance moves would become all the rage.

Years of trying and I've never, ever, not once, been cutting edge or 'trendy'. 

But here it is!!!! My backstage pass is an auto immune disease that permeates every fiber of my daily life and makes me anxious everytime I need to eat!  Who knew?!!?

Did you see the girl on the left roll her eyes when she was talking about Celiac Disease?  She's SOO jealous!  I bet she wishes she had to examine every. single. morsel. that goes into her mouth!

Did you see the girl on the right nod her head, shake her hair and sarcastically say Celiac Disease is 'hot'?  She's SOO envious that she doesn't have debilitating fatigue that robbed her of fourteen years of living a full life. 

They both wish that western medicine treated them like they were crazy.  Who doesn't love attention from the bad boys?

They're just green with envy that we're 'hot' and they're not! 

But alas, fads are fleeting and our time in the spotlight will be short lived.  After trying to play 'gluten free for the weekend' and realizing the enormous amount of dedication it takes to live uncontaminated, the fakers will drop by the wayside.  Or they'll invent a magic pill that will be promoted as making it an easier proposition.  So let's enjoy the limelight while we can.  We Celiacs are the real deal. 

In the years to come when the posers tell us, "I tried going gluten free once... back in the twenty-teens, " we can smile...

...because we will still be walking the walk.  We didn't choose to be trendy.  We just are.

Oh, Oh Domino's! Not Your Gluten Free Best

Domino's has announced they now offer a gluten free pizza crust. 

To their credit, they are being very honest about the fact that their kitchens are not gluten free and that there is no special prep areas for their structurally gluten free pizza. 

But it only takes twelve seconds of this video to turn me gluten freeky!

Where has that ladle been?!?!?  Do all the pizzas go on the same pans?!?!?!  Look at that ungloved hand reaching into the mushrooms!!!  That pizza slicer looks like a wheel of death to me...

Some studies have shown that up to 100 mg of gluten a day may be tolerated by Celiacs but as little as 10 mg can set off an auto immune response.   This picture shows you an approximation of what 100 mg of gluten would look like.  That's a Ritz Cracker**, folks...

Even the smallest amount of gluten will attack the immune system of a celiac, no matter how 'mild' you think you have it.

I know that I should not eat Domino's new gluten free pizza. What worries me is that others with celiac disease might not know that they shouldn't eat it either; or that they might be enticed by the allure of this easy pie.

My concern is that the gluten free fad is rolling so far out of control, that those of us who should never have gluten are going to get run down by bandwagoneers waving flags of gluten free products over our smushed little immune systems.
 
It's not enough to call something 'gluten free'.  It must be prepared in a separate, safe area that is free from cross contact.

Don't want to discuss it
I think it's time for a change
You may get disgusted
And start thinkin' that I'm actin' strange
In that case I'll go underground
Get some heavy rest
Never have to worry
About what is worst and what is best


Oh, oh, Domino's.


**No Celiacs were harmed in the taking of this picture. (I wore gloves and took it in our 'gluten' corner.)

Aww, Bi+ch! I'm Hit! I'm Hit!

Story goes that a group of guys made their way up to the country for a boys' weekend.  After some beers and bonfire building, someone got the great idea to throw a box of unspent ammunition into the flames.  Some of the cartridges cooked off and went flying.  One grazed the head merry-maker in the leg.  He started hopping around yelling, "Aww, bitch!  I'm hit!  I'm hit!" 

I love that story.  I love that phrase.  And now I own it.

There's no doubt that I've been hit.  I've been glutened and I'm not sure where it came from.  Maybe from dinner at PF Changs'?  Maybe from some random crumbs of garlic bread I served my guests?  I don't know for sure, but I know I'm hit.

I woke up the other morning feeling tired and unrested.  Everything on me ached.  I had spent the day before dancing and being animated in a morphsuit, so I initially thought I was sore from that.  As I stirred, I realized my left arm was totally numb and my hand was twisted into an arthritic Lady Gaga claw.  I knew I had been glutened just by how I felt. 

Bloated?  Hit.
Frequent trips to the bathroom?  Hit.
Acne around my mouth?  Hit.
Brain fog?  Hit.
Itchy scalp?  Hit.
Sore throat?  Hit.
Bone numbing fatigue?  Hit.
Night sweats?  Hit
Red, burning eyes?  Hit.
Low grade fever?  Hit.
Chest congestion? Hit.

The final blow that sunk my battleship: a sharp pain in my lower lung every time I try to take a breath. 

I accidentally glutened myself in December.  I was making gravy for a big extended family dinner.  Out of habit I licked the spoon before putting it in the sink.  The same symptoms I have right now started rolling in.  When I got the sharp pain in my lungs, I was sure the congestion had turned to pneumonia.  Chest x-rays said it wasn't and it slowly went away after a week.  I went back to feeling like the new gluten free me.

Then in March it happened again.  I couldn't pin point the gluten source that time but the waves of symptoms slowly hit in the same order as December: numbness, claw hand, bloating... you get the picture.  But that month the pain in my right lung got increasingly worse.  It got so bad that it woke me up one night.  I have to insert a side note here:  I have a really high tolerance for pain.  It's not bravado, just fact.  The pain and the inability to fill my lungs with a full breath had me panicked. 

I went back to the doctor that day and got clear lung x-rays, clear ultrasound of my abdomen, clear CT scan of my gallbladder and surrounding bits.  Again, the pain went away after a week. 

I asked for copies of the results only to find that my past two lung x-rays said I had emphysema?!?  Needless to say, I went to a pulmonologist for a second opinion.  I know now, for sure, that my lungs are fine.  Actually, they're better than fine, they're in phenomenal condition.  So why the pain in my lower right lung?  My PA, my gastro guy and the lung doc all shrugged their shoulders; maybe it's the gluten?

So here I'm back at the celiac bonfire.  Some ammunition has been thrown into the flames.  My body has spent the last three days cooking off the cartridges.  The bullet has flown.  My lower right rib cage hurts each time I take a breath.  Third time is a charm.  I know for sure where the pain is coming from and I'm left with the voice in my head saying,

"Aww, bitch!  I'm hit!  I'm HIT!"

I'd Rather Be Gluten Free Than Iron a Shirt

I have some wonderfully supportive friends and family* who are helping me, at least tolerating me, in these first early months of living with Celiac Disease. 

 

They seem to accept my random gluten facts and rants as another phase of my penchant for information gluttony.  They've taken my Anthony Bourdain watching, orchid growing, homeschooling, bread baking, P.J. O'Rourke reading obsessions in their stride. 

 

But gluten?  Gluten may be here to stay. 

 

And there is one friend who is strapped in next to me on this crazy ride.

We call her the good witch of the North; since she's from Canada, eh?  This magical woman has bought gluten free cook books, made me gluten free goodies, experimented with the elusive gluten free baguette and more. 

 

Just today she brought me a recipe for some crazy easy, crazy delish flax muffins (I promise to share them in a blog).  With the muffins she brought her special brand of wisdom:

 We make our choices and most of us do exactly what we want to do... if not, I would iron more often.

Karen said so perfectly how I feel about facing the challenges of an autoimmune disease. 

I am the maker of my choices.  I am not, nor ever will be, a victim of circumstance.  I may not have chosen this challenge but I can definitely choose my attitude about it:

I am embracing my gluten free life in some very wrinkled clothing!


*To all my fabulous and jealous friends, you know who you are, I will blog about you too.

Let's Get the Party Started

I've been wanting to start a blog for a few months now. 

I've composed deep and insightful posts in my head about having celiac disease and living gluten free.  None of them have felt 'right' as my blog debut.  There's the soul searching post about finding a name for what ailed me; complete with a Shakespearen reference.  Then there is one about my failed first attempts at gluten free baking.  And one about the life changing fish filet sandwich...but they all feel too serious to open with.

I'm the girl who insisted her groom dance to Lyle Lovett's She's No Lady for their first song.

I'm the girl who spent the first few weeks after getting my Celiac backstage pass singing like the Pussy Cat Dolls:

Dontcha wish your girlfriend was gluten free?
Dontcha wish your girlfriend had Celiac like me?
Dontcha?
Woo hoo, hoo hoo.

The deep insightful thoughts are still here and they'll have their day on display.  But for now, let's get this party started the best way I know how.

Put on your Rick James wig.  Unbutton that sequined vest and...

HIT IT!

She’s a gluten freeky girl,

The kind you would not feed a biscuit.
She will never let your crumbs  around;
Don’t eat your crackers in her sheets, ow girl.

She likes a beer in her hand.

She says that Green's is her all-time favorite.
When I bring her Redbridge it’s the right kind;
She’s never hard to please.

That girl is pretty clean now.
The girl’s a gluten freek.

The kind of girl you read about

In Delight magazine.

That girl is pretty healthy.
The girl’s a gluten freek.
I’d really love to feed her
Every time we meet.

She’s all right, she’s all right

That girl's all right with CD, yeah, heh, heh, heh!

She’s a gluten freek, gluten freek
She’s gluten freeky, yow.
EVERYBODY SING
Gluten freek, gluten freek.

She’s a very special girl.

From her villi down to her toenails;

Down to her feet.

And she’ll wait for you at the backdoor of her kitchen
With some gluten free cuisine.

Chinese food is not a prob for her she says,
“PF Changs, I’ll be waiting”
When I get there she’s got Little Soya, wine and some spring rolls.
It’s a gluten freeky scene.

That girl is pretty clean now.
The girl’s a gluten freek.

(Gluten free) Temptations sing!

Ohhhhh

Gluten freek, gluten freek,

That girl’s a gluten freek.

Ohhhhh

She’s a gluten freeky girl,

The kind you would not feed a biscuit
She will never let your villi down.
Once you get her gluten free, ow girl.

Blow, Kimmy!