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I'm a Marketing/Advertising pro with 15 years experience in retail, restaurant & cpg industries.  Celiac Disease saved my family and has inspired me to be a student of gluten, an advocate for awareness and eager to help businesses that serve our growing market to DO GLUTEN-FREE RIGHT!

Monday, May 12, 2014

calling the 1%, the gluten free crazy train needs a driver!

Celiac isn't a word you'll often hear in my house. Disease is a word you'll never hear. It's not that celiac disease isn't a problem in my house,  it's a gigantic issue in my family. But it's not a problem. It was a problem. It was the reason for lots and lots of problems and almost stole my baby from me. But that's the bad stuff and I don't dwell on the bad stuff. We don't dwell on the bad stuff. Not that it's forgot, just that it's over.

Gluten & Gluten Free are words uttered all day, every day. Why? Because it's important. I'm hesitant to say this but being gluten free does define who we are as family and as individuals.  All 5 of us. We don't eat gluten free, we ARE gluten free, and yes, there is a difference.

Gluten Free is our life. It more than our medicine. It saves us from pain and illness. It makes us happy. It is hard. It makes us stronger. It is annoying. It exemplifies our willpower and our strength. It requires thought and planning and creativity. It actually can be fun.  It bonds us as a family. And we all have to care about every table we sit at and every bite we put into our mouths. And thats okay because gluten free makes us good. And gluten makes us not good.

My kids know what gluten is and that it is something they can't have. And most days, they are okay with that. My 7 and 8 year old are experts. They speak intelligently on the subject and often answer questions posed by teachers and other students. They are role models. When my son wrote a biography about what makes him special, being gluten free was high on the list, right behind being a great football player.  Even my 3 year old knows to ask if a food is gluten free and never ever complains if I tell him he can't have something because he KNOWS if it's not gluten free it hurts his tummy. Gluten free food feels good.

We all miss a good pizza. But we didn't appreciate a good pizza back when we could. We ate it. A lot. Too much. And enjoyed it. But now, when we indulge in a gluten free pizza, it's a project that requires traveling to a place we deem safe and spending a small fortune, and we relish each and every bite. Pizza night is a party, a big deal,  not a quick bite on a  random rushed weeknight. And that's good.

My two sisters are gluten free. One of them tested negative for celiac but after avoiding gluten for a while,  realized it was most definitely a problem,  a problem she and her doctors had been looking for answers for for years. My other sister didn't get tested but tried it and found her daily migraines completely vanished.  Her doctor is shocked.  And interested.  I've found my own doctor has less knowledge than I do yet maintains a gluten free diet himself. I can tell you horror stories from doctors in the past, but that's the bad stuff I'm not dwelling on. Same story as you've heard before, many doctors, different kinds of doctors, no answers to serious problems. But the tides are changing. Not because the science and the research are improving, that's still a slow go. It's people. Ordinary people. People who are sick and sick of having no answers. People whose kids are sick, physical or mentally. People are catching on and asking questions. Seems doctors are hearing more and more from folks that tried gluten free on a whim and found it to make a difference in their lives. It makes me angry that many doctors are behind the learning curve but that is changing. And that change is very good.

The celiac community taught me everything.  And Google. When my baby was sick and I was desperate, I found enlightenment at celiac.com and heard stories and advice on their forum. I shocked the docs and found the cure for what they deemed uncurable. My baby wasn't sick for no reason, he was sick for a reason. A stupid reason, it was toast and chicken broth that were doing him in. When I noticed right away how gluten free was changing the whole family,  it wasn't the doctors or the nutritionist or the dietician that got me on track in this tumultuous celiac world, it was Google again with celiaccentral.org, About.com and the wonderful world of twitter that educated me and made me not feel so alone. People helping other people. Smart, informed and inspirational people. Because they know. And they know most people don't know. Expertise comes from living the journey. And well, someone on twitter said it well, something like this... When celiac affects you or your children, you suddenly become an advocate, because you have to. And I might add, it's also because you want to. When I share my story or what I've learned, it's because maybe I know something that might helps someone else not suffer so much. Over food. If I help 1 person then I done good. Lots of people out their doing good. The celiac community is so so good.

But it bothers me that the amazing celiac community is getting kind of angry and kind of stale. It has no humor.  And fights among themselves. It often doesn't like that the celiac gluten free world, the 1% celiac, recently, officially, scientifically opened up to the masses - the gluten sensitive, the 6%, or maybe 20%. I even saw 1 doctor estimate the stats to be closer to 60%. Millions and millions of people who don't tolerate gluten either. But there are no tests to confirm it. And little scientific understanding. And lots of misunderstanding and guessing. Sometimes bad and sometimes good.

Out of no where, the gluten free market has exploded. And it is full of uneducated people kind of trying it out. Hopeful people. But confused. And companies catering to gluten free consumers. And both are getting it sometimes right and sometimes wrong. Mostly because they don't know any better. It's hard to convert a celiac to a gluten free life, it's harder to fully convert someone who hasn't been told gluten free is a medical necessity but thinks they are doing something good. And for many of them, they are doing something good. And if they get it right, maybe their life could be good too.

But the gluten free world is a mess. Those of us who have to be gluten free have to explain at a restaurant that our gluten free is the serious kind, we need to triple check a package label because sometimes gf isn't all that gf after all. It's not always good. But having options, expanded selection in the supermarket and more restaurants offering options beyond a salad, we'll that is good.

The thing that drives me batty is... Celiacs spend too much time being serious about their disease and being angry at those who want some of the gluten free magic for themselves. Or getting angry at a joke about the gluten free craze. Hello my fellow celiac community members... WE HAVE A DISEASE WHERE PIZZA IS POISON. WHERE A CROSS CONTAMINATED SPOON CAUSES TORTURE. It is awful, it is painful, but come on - it is kind of humorous. Not the disease, that's not funny, but the ridiculousness of it all. Show of hands, who has ever brought their own silverware to a restaurant? Who ever drilled a bartender about the source of their vodka? Death by breadcrumb should be our motto. Yeah, it is our reality, but it is weird and really, really interesting. And it is wonderful when people talk about it. In our schools, in restaurants, in the neighborhood, in the media or on late night tv. Let's talk about it. I don't like it when it's talked about wrong, but when the talk is right, that's good.

My point in writing this too long piece is that I have a message. It's a good one.

Hey Celiac Community - I have 3 things you need to hear this Celiac Awareness Month:

1. No one wants to hear about a disease. The word celiac is icky. As soon as you say the words disease or awareness, most of your potential audience tunes you out. But people DO WANT TO HEAR about other people who were sick and got better without drugs or medicine. The words "gluten free" are cool, they are trendy and when you use them, people will listen to you. It's a marketing thing, capture your audience with buzzwords, it's a trick and it is good.

2.  Obsessing over the seriousness of the illness makes us look like even more ridiculous than the the ridiculousness of our lifestyle. My feeling is, I control this disease and if I do my job right, I dont have to think about this disease progressing. People, children... are dying from cancer and heart disease and battling degenerative diseases and genetic diseases for which there is no cure... These are scary and heartbreaking and very very bad. (And sometimes may even be gluten related but I'll save that for another day). And our disease has a food fix. So perhaps it is time to lighten up. Talking about gluten is good. Talking about how good it is to be gluten free is good. Talking about how horrible things were before going gluten free is good. Encouraging every one of us who is trying to make a difference is good. Accepting that our disease is ridiculous and seems a bit funny, we'll that can be good too.

And most important...
3. Let go of your frustration with the fad dieters, the tryers, the gf trend setters and the companies hoping on the gf bandwagon. Stop fighting them and educate them, let's be teachers and find creative ways to educate the masses.

We are the 1%. The gluten free revolution is happening, like it or not and WE NEED TO LEAD IT.  We need to stop caring WHY others want to be on our gf roller coaster ride and start operating the ride. Let's drive this crazy train before it spirals out of our control. Let's educate. Encourage dialogue, even if it's in a late night monologue. Let's stop ranting and start yelling our message loud and clear. Let's think bigger.  Be bolder. Reach farther. And laugh at ourselves more often.

Tuesday, May 6, 2014

The Gluten-Mental Health Connection

A hundred years ago, schizophrenia was known as "wheat-madness", yet today - most are surprised that there is a connection between gluten/wheat and mental health. I am not an expert, but witnessed a transformation in my husband when my son was diagnosed with celiac and we all went gluten free. Yes, it turned out that celiac/gluten was his problems too... but the mental health connection - that blew us away.  And so the research began and it became evident that gluten plays a role for many living with mental illness. Here is a collection of findings and professional articles - note the gluten connection to schitzophrenia has been documented/studied for some time, while the connection to bipolar disorder, anxiety, depression, adhd, etc is "newer" with less evidence. Celiac disease is often referenced but note that the newly accepted Non Celiac Gluten Sensitivity shares common symptoms but is more difficult to diagnose.

Markers of Gluten Sensitivity and Celiac Disease in Bipolar Disorder

Neurologic and psychiatric manifestatio - PubMed Mobile

Is Gluten Making You Depressed? | Psychology Today

Evolutionary Psychiatry: Gluten and Schizophrenia Again (with an added splash of Toxo!)

Can Eating Wheat Cause Psychiatric Problems?

The Hidden Link Between Gluten Grains and Schizophrenia

Studies show gluten sensitivity in people labeled with schizophrenia and bipolar (and how gluten can effect a lot of us regardless of dx) | Beyond Meds

Developmental Disorders and Dairy Products, Grains, Gluten and Other Proteins

Personal Stories


Related Issues

Violence, Aggression, Conduct Disorder

Crime Times- linking brain dysfunction to disordered/ criminal/ psychopathic behavior

Saturday, February 22, 2014

Don't Feed The Kids

This post is in response to a Huffington Post Today's Mama blog post "Why Do Your Kid's Allergies Mean My Kid Can't Have A Birthday" which you can read here 

Dear Carina and millions of moms who share your frustration,

I was you. Frustrated parties were a food headache for me. Kinda proud to say my kids, thankfully no food problems with us. Felt incredibly sorry for the moms that had to deal with THAT drama. Annoyed that drama had to be my problem.  My 3 kids, they were all good.

At age 4 my little princess got hives from strawberries and then suddenly, I was in the club – food allergy mom – no strawberries for the princess¸ keep those strawberries away from us. Oh it was heartbreaking, we had to give up our beloved trips to the strawberry patch and she had to give up her favorite food and ice cream flavor. Oh man, it was rough. The best friend wanted a strawberry cake for her birthday and her mom bought us a special cupcake. Yep, I knew that day, I was in the club.

Three year later, I learned that I HADN’T A CLUE!

At 1 ½ years old, my big strong baby boy got sick, really sick – doctors didn’t have any answers and he was dying. Tbear (as we affectionately called him) dropped from 30lbs to 20lb in 6 weeks and withered into a child who couldn’t stand, couldn’t sit up without assistance and ate with a deep hunger followed by violently losing it in both directions. No thanks to the top notch medical team, we discovered his reaction was a autoimmune reaction to gluten. Celiac disease it was. That gluten filled stuff that all of us love had suddenly become a toxic poison in his system. And the disease, well it caused his body to also reject dairy and soy.  Tbear got better rapidly on a restricted diet and oddly, the rest of the family, we started changing too. Turned out, we didn’t have a clue but celiac was not just Tbear's disease, we had a house FULL of autoimmune reactions to gluten and bad reactions to dairy. We had had a multitude of physical and mental health problems that disappeared, some of which we didn’t even realize we had until they went away.  For the record, if your gluten-filled cupcake is anything like an oreo, it will land my 8 year old in the hospital for days with internal inflammation that appear like his insides are literally about to burst. A crumb from that cupcake or a little milk in the frosting, that will turn our happy home into a house of horrors for about 3 days. But that's my problem. Other moms have it way worse. 

So here we are. A gluten free, dairy free, soy free, oh and I almost forgot, strawberry free family and we don’t want any bit of your gluten-filled cupcakes or pretty much anything you have to offer. Eat em up, we bring our own treats, everywhere we go. Don't worry about us. No pity either, we've never been better!

But here’s the thing, we aren’t alone. When I learned that my daughter’s classmate had a anaphylactic reaction to dairy and another to peanuts I started paying attention. 

1 in 13 kids has a food allergy

1 in 100 has celiac disease (and research is suggested this number may be closer higher)

1 in 10 have a gluten sensitivity 

The consider this, diet is now believed to play a critical role for many other children like:

1 in 50 with autism-spectrum disorder

1 in 10 with ADHD

1 in 10 with asthma

1 in 10 with Juvenile Diabetes

And this list just skims the surface – factor in eczema and other autoimmune issues and my head starts to hurt. While I’m no math wiz, I can tell you… that’s a lot of kids who “may” have a food issue that their parents have to be concerned with.  Do you really want to be the one feeding them? Really? So your kid's day isn't ruined?  Do you realize how ridiculous that sounds? It's really not your call! 

Today is not like yesterday and I don't even want to think about the food-challenges of tomorrow. Your kid isn't my kid or anyone else's kids. There is the one thing that's become abundantly clear

So let your child eat his cupcakes. But do it at home. Keep ‘em away from school and my kids and all these other kids who can’t, or maybe just shouldn’t.   

As for you and all the other moms who find the food-allergy kids a burden, it time to woman-up and BE TODAY'S MAMA!  

Stop pretending that cake makes a party and that not having a cupcake with ruin a child’s birthday. You’ve created that notion, not your child. Rise up to the occasion and change the conversation. Be a role model mom for all the kids, the food-sensitive ones included. Celebrate the birthday with cheer! Replace the cupcake or processed gummy bear and with a goodie bag stuffed with stickers and rainbow looms. Visit the class with a great book or bring a party game. Ask the teacher if you can send in materials for a craft project the kids can get their hands dirty with. Be creative with your talents or offer a tiny fraction of your time. For my daughter’s birthday, we skipped the snack and instead we made a scary spider out of pipe cleaners, felt and feathers. It was awesome. The kids had a blast. And not one child asked “where’s the snack”. And trust me, the teacher preferred it.

As moms today, it is time to evolve and teach our kids that food doesn't make a party.