This is a very raw post that I wrote a couple months ago after being “glutened”.  I was frustrated and sad, and this is what poured out.  I haven’t posted it publicly before, but feel like today is a perfect day to do it because of the Disney and Chelsea Handler craziness of this week.

And really, it all comes down to this:
Choosing to eat gluten-free because it makes you feel better and having to eat gluten-free to save your life are two very different things.  <———ATTENTION MEDIA

(Edit: I wasn’t referring to gluten intolerance in the statement above.  I meant those who “try to eat gluten-free because it makes me feel better but then I cheat whenever I feel like it and I’m really doing it because it’s the fad of the moment”.  I hope that clears it up.)

So here they are, my raw feelings on
what I want you to know about celiac disease:

I want you to know that I’m not a picky eater, I’m not on a fad diet, I’m not a health freak.

I want you to know that I feel like the biggest pain in the butt when I sit down at your table and have to go through my spiel.  I want you to know that I see your eyes roll when I use the term gluten-free, and it makes me nervous for my health.

I want you to know that gluten exposure turns me into a different person.  Like a Dr. Jekyll and Mr. Hyde kind of a change.  I go from feeling like a normal happy human to, in an instant, feeling like I want to punch the world in the face.  I want you to know that I get anxious, depressed, frustrated, and short-tempered when gluten enters my body.  I try to stay away from my family as much as possible so I don’t say anything I will later regret, although it inevitably happens.

I want you to know that this isn’t an “upset tummy” disease.  All celiacs are different, and my symptoms affect my entire body.  First it feels like icy fingers are fiddling with my brain.  Then my stomach is a mess and fatigue hits me like a truck.  I get hot flashes, mood swings, bladder pain, aching joints, and headaches.  The worst part lasts 1-2 weeks, and I don’t feel like myself again for at least a month.  Sometimes I think I’m better then BAM, I’m driving with my kids in the car and I can’t focus my eyes or remember where I’m going.  I want you to know it’s scary.

I want you to know that I’m sick of talking about celiac disease.  But if we’re going to hang out, it’s going to come up.  Social interactions always seem to involve food, don’t they?

I want you to know that nothing about this is easy.  I thought being a dietitian would make the transition smoother.  It hasn’t.  I want all health care providers to hear this: Stop telling your newly diagnosed celiac patients that treating the disease is easy.  IT’S NOT.  And stop calling celiac disease “trendy”.  It’s like a slap in the face.

I want you to know that as much as it helps to have awareness and thousands of gluten-free options these days, those things hurt us too.  Food companies and restaurants are cranking out “gluten-free” items as fast as they can to cash in on the fad, and most of them aren’t doing it responsibly.  Then we get sick.

I want you to know that I have to think about celiac disease all the freaking time.  Every time I put food or drink in my mouth, lotion on my skin, gloss on my lips.  Every time I serve my kids pizza at a party and have to scrub my hands.  Every time someone asks if I want to meet for lunch.

I want you to know that as much as I hate this disease, I’m thankful to know the cause of my health problems.  I’m thankful to have a name for it.  I want you to know that there is an incredible celiac community out there full of beautiful humans who love and support each other.  I don’t know where I would be without them.

I want you to know that if you suspect you might have celiac disease, you need to get tested before going gluten-free.  Don’t let anyone tell you otherwise.

I want you to know that you know someone with celiac disease, and they need your love and understanding.  This is harder than it looks.

Do you have celiac disease?  What do you wish people knew about it?

Recently, I cofounded a group called Dietitians for Professional Integrity.  Since then, I’ve had a few dietitians tell me how sad they are that I’m part of this group, I guess because they think we are against dietitians.  That could not be further from the truth.

And I’ll be honest, I hate confrontation.  Hate it.  But there is a time to speak up, and that time is now.

Below is my official statement of concern, posted on the DFPI Facebook group today.  (You can like our page here)  My heart is pounding that this is up, only because I want everyone to know my heart behind it.  I want other dietitians to know I’m coming from a genuine place.  I want you, my readers, to know I’m standing up for you and your families.

To give you a bit of reference, the Academy of Nutrition and Dietetics (AND) is currently corporately sponsored by big food companies like Coca Cola and McDonalds.  Dietitians for Professional Integrity advocates for greater financial transparency, as well as ethical, socially responsible, and relevant corporate sponsorships within the AND.

Basically, we don’t think big food companies have our (or your) best interest at heart, and want AND to cut ties with them.

Here is my statement:

“I want to start by saying that I am FOR challenging the current sponsorship model because I am FOR dietitians. I have always been, and will always be a champion of my profession. Which is why I think some things need to change.

I would like to keep my statement brief because I think the matter is really very simple. These large food companies should have no influence over our profession whether actual or perceived. I have had to prove my professional integrity too many times by assuring and re-assuring clients that I do not promote hyper-processed foods even though my credential is tied to these companies.

And let me just say, this is not about being perfect. I certainly am not. This is also not about forcing unrealistic expectations on others. I meet clients where they are and guide them through whatever it is they are facing. This is about the ethics of tying our profession to an industry that keeps people in a perpetual state of sickness, and then is applauded when they offer up some kind of a health truce like adding sliced apples to their menu.

If AND is to continue to fight the good food fight for our country, we must do so in the best interest of the American people, not Big Food.”

I would love to have a conversation about this. Ask questions, share your concern, disagree (politely please).  Let’s talk.  This is important.

I remember that day in May of 1999 when the skies swirled green.  I had never seen a sky like that, even growing up in tornado alley.  It was the day of my Chemistry 2 final.  A class I was barely passing, and needed to scrape by to get into the nutrition program.  My future hinged on that test.  As I crammed in one last session with the tutor, sirens interrupted us.  I think we hid in the basement twice that afternoon before sprinting into the testing room.  That night we had no power, so we didn’t realize the extent of the devastation until the morning.  We sat glued to the news all day, gaping at the mess only ten miles north of where we sat.  I’ll never forget driving past that stretch of Moore the next day.  It’s true, seeing the wreckage in person is completely different than watching it on TV.  Where buildings stood, only the foundation was left.  Everything gone.  Just gone.  The tornado cut a mile-wide hole through the state.

And they’re saying this tornado was 3 times worse.  I sit watching the news again all these years later, and I know the reality of what I’m seeing is infinitely, painfully worse than what can be conveyed on the screen.

I can’t get Oklahoma off my mind.  Too many pieces of my heart are there.

Oklahoma, my first home away from home. 

Where I partied too hard, and inched closer to Jesus.

Where I fell in love with nutrition.

Where I made my lifelong friends, many of whom are still there and thankfully ok.

Where I met and married a sarcastic baseball player.

Where my family reunited, for a while at least.  

So I pray, I groan, and I help.

Because we are not helpless, this far away, we can still do something.

If you want to help, make sure to go with a reputable organization who is already on the ground.  Here are some ideas (thank you Pioneer Woman for pulling many of these together).

Hope Mob & Convoy of Hope
HopeMob is the only fee-free fundraising platform online. 100% of all funds received will go to Moore, OK where they already have teams working on the ground.

The Okay See
Benefit T-Shirts.  100% of all proceeds will go directly to help Oklahoman’s affected by the May Tornados.

Salvation Army
Supporters are encouraged to give online at www.SalvationArmyUSA.org or by calling 1-800-SAL-ARMY (1-800-725-2769). You can also text the word “STORM” to 80888 to make a $10 donation through your mobile phone; to confirm your gift, respond with the word “Yes.”

Samaritan’s Purse
Samaritan’s Purse has deployed a team to Moore, Oklahoma and will respond to the current needs in any way they can.

Regional Food Bank of Oklahoma
The Regional Food Bank of Oklahoma, in partnership with Oklahoma Voluntary Organizations Active in Disaster, is asking that the public support all rescue, recovery and disaster relief efforts with donations of cash to your favorite responding charity. Financial donations will allow disaster relief agencies to purchase whatever items are deemed necessary without resulting in the additional burden of securing warehouse space and volunteers to work donated product.
To make a tax deductible donation to the Regional Food Bank of Oklahoma, go to www.regionalfoodbank.org or call 604-7111 or text FOOD to 32333 to give $10 to relief efforts.

Feeding America
Feeding America will deliver truckloads of food, water and supplies to impacted areas through its network of more than 200 food banks and 61,000 agencies. The organization’s food banks will also set up additional dropoff sites.

American Red Cross
People who wish to make a donation can support American Red Cross Disaster Relief, which helps provide food, shelter and emotional support to those affected by disasters like the recent tornadoes in Oklahoma and Texas as well as disasters big and small throughout the United States by visiting redcross.org, dialing 1-800-REDCROSS or texting REDCROSS to 90999 to make a $10 donation.

Just in time for shower season, a pretty pink dip perfect for celebrating a bride, a new graduate, or a tiny pink bundle of joy. The delicate earthy flavor of this beet hummus pairs perfectly with crisp vegetables and hearty crackers. Plus, it’s a cinch to make.

Use white or yellow beets with just one red beet for that perfect pink hue.
Beet hummus. Pretty perfect, don’t you think?

Don’t forget to check out the rest of this month’s Recipe ReDux roundup below!

Happy Monday!  I hope you’ll check out the second half of my interview with the National Peanut Board today.  We’re chatting about gluten-free kitchens and the biggest misconceptions about celiac disease.

Click here for Part 2.

Click here for Part 1.

{Consider my heart officially melted.}

The National Peanut Board blog asked me to share my celiac story this month.  I’m talking about the challenges of being diagnosed with celiac disease as an adult, and what I’ve learned so far.

You can read part one here.

I also want to point you to this post by Gluten Dude and encourage you to sign the petition against bullying.  I don’t know whether Joe or Leila will develop celiac disease, but it worries me that this kind of bullying is being encouraged by Disney when it is already such a huge problem in schools.

Also, don’t forget to enter to win “Fast & Simple Gluten Free” before the end of the day!  (Contest ends at midnight.)

Have a great Friday!

I can’t take credit for these tasty nuggets.  My mom made a batch and sent a container home with me a few weeks ago.

They were for the kids.

I ate them all.

Oops.  

I thought I should make it up to them, so I made a batch.  Then another.  Then another.  We have been having them once a week ever since.  Partly because they’re so easy, partly because they’re so healthy, and mostly because they are so darn good.

Give them a try, but don’t forget to save some for the kids.

{Giveaway has now ended. You can find the recipe at the bottom of the post.}

One thing I’ve missed since going gluten-free is pizza night.  Oh sure, we’ve had a few pizza nights using frozen gluten-free crusts, but it’s SO not the same as homemade.  And it’s not nearly as much fun either, especially for my little helpers.

Which is why I was so excited when my blogging friend Gretchen (you may know her as kumquat) sent me her new gluten-free cookbook, Fast & Simple Gluten-Free.  There was a simple, tried and true recipe for pizza dough inside!

Of course there are pages and pages of other mouthwatering dishes too such as Coconut, Banana & Macadamia Nut Pancakes (drool), Tortilla Chicken Soup, and even Butter Rolls.  And my favorite salad ever (I got to be the recipe tester for this one), Rustic Italian Salad with Grilled Chicken.  Imagine the most incredible combination of salty, sweet, and savory you can think of.  Then multiply it times a million.  That one was a huge hit with the kids too.

What I’ve always loved about Gretchen’s recipes is that they aren’t just gluten-free, they are heart and soul, make you dance in the kitchen, smile til the last bite recipes.  Here’s a quote from the introduction of Fast and Simple Gluten-Free:

Food is one of the biggest parts of our lives — it is a big part of our every day.  And as gluten-free eaters, we need to know we can still hold on to what we crave and love from our kitchens.  We, too, deserve to have foods that make us sing, foods that still instantly bring back those old memories, and foods that awaken and delight our senses.  None of the beauty and wonder of food needs to be whitewashed over because gluten has been removed from it.

Oh I could just kiss her for saying that.

I’m happy to report the pizza crust was a success. We made two batches and piled them high with our favorite toppings.  Artichoke hearts and basil from the garden, pine nuts, tomatoes, shallots and a sprinkle of parmesan cheese.  The crust was beautiful and chewy and a bazillion times better than frozen.

Pizza night is back.

Enter to win a copy of Fast & Simple Gluten-Free by Gretchen F. Brown, RD at the bottom of this post.  You can also find it on Amazon.

a Rafflecopter giveaway

Congratulations April O. our winner!