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consulting-celiac-in-the-tardis · 7 years

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9 Ways You Can See My Invisible Illness, Celiac Disease

New blog post! As I've shared before, one of the hardest parts of living with an invisible illness is that you look "normal" - but your body isn't. Last month, I wrote about how people can "see" my invisible illness of fibromyalgia. However, I also have celiac disease...and, people may not realize that there are way more visible "signs" of celiac disease than a gluten free diet.

So, today, I'm sharing the visible quirks and eccentricities that reflect my chronic illness of celiac disease - from my dates' improved dental hygiene to my gluten free swag!

1. My obsession with food labels.

I'm that girl: the girl who takes seven minutes to choose a new brand of cereal to add to her grocery cart. Sure, my dedication to finding the perfect gluten free product to try is partly because I'm a foodie. However, when you have celiac disease, you also need to pay way more attention to food labels than the average American.

Why? Well, obviously we need to make sure a product is gluten free. However, people with celiac disease also need a cross-contamination-free diet. This means sometimes we need to get out our magnifying glass (joke) or even our phones to do a quick Google search (not a joke) to make sure a "gluten free" product really is just that. (Cough cough, the gluten free Cheerios controversy...)

2. My "clean before you kiss" rule.

It's awkward. It's embarrassing. But it's also a fact: I can get glutened from being kissed by someone who recently ate gluten. When I was with my first boyfriend, I sometimes let my strict "no kissing before brushing" rule slip...but when I started feeling like a zombie, I knew that cross contamination was killing the mood (and me).

Picking a gluten free dinner solves that problem too!

Now, I try to joke, "Fun fact: I can get glutened by a kiss, so all my dates need to brush their teeth first!" early on into a first date. I used to be self-conscious and worried that guys would think my request was too "high maintenance" to deal with. Two relationships later, though, and I know that people who really care don't mind clicking "pause" on romance to brush their teeth. As I always tell my dates: "Your dentist will thank me!"

And, let's be honest. Only being able to kiss with minty fresh breath isn't a bad deal!

3. The restaurant dinners where I just watch my friends eat.

A few weeks ago, one of the other girls in my MFA program had a birthday, and she invited everyone out to dinner at a local bar at the last minute. Honestly, I didn't really feel like going to a restaurant with zero gluten free options and watching people eat. However, I drove myself across town anyway, knowing that a social break from lesson planning would do me good. And you know what? I had a blast.

Like this post? Then tweet me some love by clicking here: "This #glutenfree gal shares 9 ways you can see my #invisibleillness #celiacdisease - besides my #glutenfreediet! http://bit.ly/2zuUawT"

I talked and joked and goofed around with some new friends as they devoured freshly baked bread dipped in balsamic and olive oil, pasta alfredo and burgers. Most likely, the other customers - if not the waitstaff - wondered why I didn't order any food of my own. But, as one hour and then two hours passed, I didn't mind being the odd one out.

Friends > food

So, the next time you see someone just watching others eat, maybe there's more to the story than a picky or disordered eater. Maybe they're a celiac or food allergy warrior feeding on socialization instead of food.

4. My insecurity with showing my stomach.

I’ve never been a fan of crop tops, but my self consciousness about my stomach has definitely increased since my celiac diagnosis. Suddenly, I had random bouts of bloating, constipation and other not-so-attractive tummy troubles. In the four years since celiac entered my life, I’ve definitely improved my gut health and overall body image. When boyfriends have asked why I rarely show my stomach, though, celiac is usually my first answer.

5. All the snacks in my bag!

Beyoncé may have hot sauce in her bag, but this celiac always has way more snacks than that. One of the biggest challenges of living with celiac disease is not being able to grab a bite no matter where you are - especially if you're living in a small town with limited gluten free options like mine.

One of my favorites!

So, whether I'm leaving the house for an adventurous day trip or an hour of errands, I typically have at least one bar (usually one of my favorite Health Warrior bars) in my purse. Let's just say that if you're ever in dire need of a snack, having a celiac best friend can come in handy

6. The questions I ask every chef or friend bringing me a meal.

What people often don’t understand is that celiac disease is much more complicated than just eating gluten free. As I’ve shared before, if you cut up one piece of bread into 7,300 pieces, just one of those tiny pieces can sicken and cause dangerous intestinal damage in celiacs like me. So, as much as I appreciate it when friends bring me a gluten free treat, I can’t enjoy it without asking about how they cooked it or what exact ingredients were used.

When I’m eating out, I need to ask the chef the same questions - even if the restaurant has a "gluten free" menu. Some restaurants are awesome in that their gluten free options really are gluten and cross contamination free. But I've been told that “gluten free” fries were made in the same fryer as breaded chicken or that the “gluten free” pasta was cooked in the same water as regular pasta too often to assume that gluten free means celiac safe.

To the customers or waiters who don't know me and my medical history, I may seem high-maintenance or picky. Really, though, I'm just doing whatever I need to do to eat safely with celiac disease.

7. My freezer, filled to the brim.

We all have those days where we just need some quick, easy comfort food. When you have celiac disease, food allergies or other dietary limitations, though, you can’t just pull into any restaurant or grab a random freezer dinner from your local grocery store.

Like this post? Then tweet me some love by clicking here: "This #glutenfree gal shares 9 ways you can see my #invisibleillness #celiacdisease - besides my #glutenfreediet! http://bit.ly/2zuUawT"

So, when I do have time to cook or blend up some delish smoothies, I make enough for a family of four and store leftovers in my freezer for emergencies. Add in some of my favorite gluten free breads, tortillas, pre-cooked grains like rice and quinoa and frozen fruits and veggies, and the freezer is my secret weapon to eating gluten free and healthy during super busy days!

8. The days I feel and look like a zombie.

Even four years after my celiac disease diagnosis, I still make mistakes. For instance, last year, I realized that a probiotic I had been using had changed its formula and now contains traces of wheat. (Luckily, there are plenty of gluten free probiotic options, this this one).

And even when people do everything right, celiac complications can sneak up on them. What do I mean? Well, I can tolerate small amounts of gluten free oats, but if I eat an entire (gluten free) oat-based protein bar or a few handfuls of gluten free oat-based granola, my body goes into zombie mode (complete with brain fog and 24/7 fatigue). Meanwhile, sometimes my stomach will decide to freak out for no reason at all. What does all of this mean? If the celiac in your life looks a little worse for wear, sure, they could have a cold...but it might be their invisible illness acting up, too.

9. My gluten free swag.

As challenging as living with an invisible illness like celiac disease can be, invisible illnesses can have a few benefits. Which is (arguably) the biggest? You can choose when (or if!) you reveal your chronic disease to the world.

Personally, I wear my celiac diaease diagnosis on my sleeve...sometimes literally. I have several shirts related to celiac disease or gluten free food. My backpack is decked out with gluten free buttons. Even my computer rocks stickers about my favorite gluten free brands.

Why do I do this? First of all, it can make the “celiac conversation” with new people a little less awkward. Instead of my gluten free diet sounding like a secret being suddenly revealed, people usually nod and say something like, “I guessed as much by your backpack.” or “I read that in the blog post linked to your Facebook page.”

Even more importantly, I rock gluten free swag to show that celiac disease is a part of who I am...and that’s it. It’s not my total identity. It’s not the end of the world or a culinary death sentence. And it’s not going to stop me from chasing my dreams and enjoying a lot of the “normal” activities every other 20-something enjoys.

What Everyone Should Know About Celiac Disease

Much like fibromyalgia, celiac disease and its symptoms are often invisible to the naked eye. In fact, in light of the recent gluten free fad, you can't even consider a request for a gluten free menu or a gluten free option at a work function automatic indications of celiac disease or gluten intolerance.

However, there are several ways you can “see” your loved one or friend’s celiac disease diagnosis...and the more you can recognize the small and large ways that celiac disease impacts their lives, the more you can empathize with their struggles and offer support when they need it.

Like this post? Then tweet me some love by clicking here: "This #glutenfree gal shares 9 ways you can see my #invisibleillness #celiacdisease - besides my #glutenfreediet! http://bit.ly/2zuUawT"

Celiac disease may be an invisible illness - but it doesn’t have to be an invisible or overlooked issue in the general public. And every time you help spread celiac awareness or support someone with celiac disease, you are part of the movement to make celiac disease just as visible as it is life-changing.

No questions today - just tell me your thoughts in the comments below!

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#Blogger #college #celiac #gluten free #coeliac #celiacs #paleo #primal #foodporn #foodart

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consulting-celiac-in-the-tardis · 5 years

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11+ Kids and Teens with Celiac Disease Already Doing Seriously Amazing Things

New blog post! If you read this blog regularly, you know that I love applying a positive perspective to life with celiac disease. At times, though, having a chronic illness or needing to follow a gluten free can feel pretty dang hard.

That’s why today’s post is highlighting 11+ kids and teens who are totally kicking booty at life, even with celiac disease! Whether you have a child with celiac you want to feel less alone or just want to read about some amazing members of the younger generations, keep scrolling to discover some pretty inspiring girls and guys.

1. A (Literal) Master Chef

If you’re a fan of the cooking show, Master Chef Junior, you probably already know all about Che Spiotta. Spoiler alert: he’s the winner of the latest season of Master Chef Junior.

According to this interview, the now-thirteen-year-old has still not mastered the art of baking gluten free bread, but he certainly doesn’t let his diet get in the way of enjoying himself in the kitchen. As Che puts it: “I probably started on the stove when I was 3 or 4. I think that’s because I’m gluten free, and at first I didn’t know what I had; there were just lots of foods I couldn’t eat...When I realized I was gluten free, I just kept on cooking. I realized how much fun it is. I love the creativity about it. “

2. 10 and 11-Year-Old Authors

The most impressive part of these stories isn’t that Lillian Bordoni and Kristen Adam respectively published books about celiac disease at ten and eleven years old. What really gets me are motivations behind these girls’ separate projects. Kristen, author of Dear Celiac (available on Amazon), wanted to keep kids with celiac disease from feeling lonely when they were first diagnosed, like Kristen felt. Meanwhile, Lillian reportedly had one of the most extreme forms of celiac disease seen by Children’s Hospital Colorado. So she wrote and illustrated Cecilia the Celiac Superhero (available on Story Jumper) to tell show readers that anyone can thrive with celiac disease as long as “they just all put their family together and try super duper hard.”

3. Hockey Superstar

If you’re a big fan of hockey, you probably already know about Kaapo Kakko, a Finnish hockey player who was the second draft pick for the 2019 NHL. But besides being an amazing hockey player who won three gold medals in the Finnish hockey world, Kakko also has diabetes and celiac disease. And Kakko won’t let either of those conditions get in the way of him dominating the ice.

In fact, when asked about his health struggles, the eighteen-year-old replied, “It’s nothing for me. I got (diagnosed) five years ago. It’s a normal thing for me.”

4. Members of the Celiac Youth Leadership Council in Seattle

Seattle Children's Hospital is doing more than just diagnosing kids with celiac disease; it's also empowering celiac kids and teens to take part in a mostly kid-run outreach and mentor program for people with celiac disease. Besides raising celiac awareness in their community, celiac teens like Elle Penarczyk are running a gluten free food drive for a local food bank and "testing gluten-free products sold in regular bakeries and pizzerias to see if they’re affected by flour in the air." Talk about a hospital - and a group of young celiacs - who are seriously going above and beyond.

5. Twin Authors Heading to College

As the self-named Casey the College Celiac, I obviously love hearing about the new generations of celiacs heading off to college. In particular, I love hearing about new advocates educating others along the way...and Rayna and Hallie Katzman definitely fit both bills.

Via the twins' Facebook page

Before they went off to college, the girls worked with their mother to write and publish a book based on their celiac diagnosis at age 13 called Everybody’s Got Something: My First Year with Celiac Disease (also available on Amazon). According to this interview, the girls wanted to create a book that filled the gap between books about celiac disease for younger kids and for adults, and gave them the information they wish they had at 13.

6. Miss Pinal County

Josephine Taylor didn't let celiac disease or Hashimoto's keep her from winning Miss Pinal County - and she's using her platform to raise some major celiac awareness. In particular, she's been working on making sure that all Arizona high schools have a safe, cross-contamination-free microwave that students with dietary restrictions can use. That way, students with celiac disease or food allergies can still eat in the cafeteria along with everyone else. At least as of this report, Taylor's efforts have paid off in one school district. But I'm sure Taylor's mission is far from over.

7. Taylor Miller from Hale Life

I've been fortunate enough to meet this teen in real life (at the first Gluten Free Teen Summit), and Taylor Miller is as kind in person as he is online. Taylor is the guy behind the super popular gluten free website, Hale Life (formally Gluten Away). Besides being a huge celiac and chronic illness advocate that speaks at tons of different events around America, Taylor also works with gluten free brands on social media marketing, owns a gluten free bakery in Tampa, Florida with his mom, and has started taking college classes. Suffice to say, he's a pretty cool guy!

8. Miss Nebraska Hopeful

Lianna Prill started competing in pageants as a junior in high school and qualified to compete for the spot of Miss Nebraska in 2014. It wasn't until Prill's dad was diagnosed with celiac disease that Prill eventually realized her constant migraines and flu-like symptoms could be symptoms of the same disease. Since going gluten and dairy free, Prill says, “Now I’m a new woman. All that stuff with being sick that I just wanted to forget about was actually part of a plan. I can’t wait to share that story and hopefully save some lives.”

At least as of this Facebook post in 2017, it seems like Prill is still fighting for her crown - but she did come in third place!

9. Celiac Strong Camp Founder

I've loved seeing that, nowadays, there are several celiac camps that occur all over the country. One of these camps, though, actually started out as Sabrina DeVos's Girl Scout project when she was just 16 years old. Nowadays, Sabrina is 21, but her Celiac Strong Camp is still (pun intended) going strong. Her main goal? In Sabrina's words: "I want other kids to experience the joy of having a few of worry free days and create a place where they can just be kids."

10. A Creative Cooking Champion

If you need some inspiration for getting creative in the kitchen, here's another inspirational teen for you to check out! Her name is Maizy Boosin and she beat three other young chefs to become a Chopped Junior Champion. Besides raising celiac awareness in the actual episode by talking about her condition, Boosin also shared plans to donate some of her $10,000 winnings to celiac disease research and education.

11. All of the gluten free and celiac kids you know in your own life!

Of course, we can't forget to celebrate every kid, preteen and teenager who's navigating the usual hurdles of life along with eating gluten free and thriving with a chronic illness. And if you or the inspirational little celiac in your life needs even more young role models to look up to, you can check out Gluten Free Living's list of epic gluten free ambassadors, who range from a young cookbook author donating all her proceeds to celiac research to kids just spreading celiac awareness in their own community.

What I Hope Everyone Knows about Living with Celiac Disease as a Teen

Honestly, this post really hits home for me because I was diagnosed with celiac disease at age 16. In fact, I was diagnosed only a few weeks before my senior year...and less than a month before I was asked out on my first date. So before I even really knew how to take care of and feed myself safely with celiac disease, I already had to navigate the awkward reality of living with celiac disease at an age where 99% of social events revolve around food. And I'm not gonna sugarcoat it. It. Was. (And still is, in grad school). Hard. It was hard to not know what to order while visiting an ice cream shop on my first date, or to constantly turn down food at pizza parties, graduation events, freshman orientation and all throughout college. But I did it. Heck, even though I was hospitalized for celiac complications as a freshman in college, I can still say that I created some amazing (gluten free) memories during those four years.

At the end of the day, I think these kids are sending the same message I try to always convey: that celiac disease can be tricky at any age but that you can still kick butt through it. And you might even change the world along the way! No questions - just tell me your thoughts! <3 via Blogger https://ift.tt/2MptcRC

#Blogger #college #celiac #gluten free #coeliac #celiacs #paleo #primal #foodporn #foodart

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