Wednesday, February 18, 2015

At a Crossroad...

Lately, I've been at a blogging crossroad...should I stay or should I go?!?!  I'm a very private person so it's really hard for me to put my story & thoughts out there -but, yet hoping that by me doing so, it truly lets someone know that they aren't alone.  My goal with this blog is simply just to bring awareness of the Celiac struggles, and life, pass along GF finds, and advocate. 

With my last 2 blog post, I tried to put my heart and soul into them, and then I got the "thank you" call for Disney.  Was that a sign that I'm helping or a sign that its as good as it gets!?!?  Often, I wonder if my blog is truly really even helping anyone...and by the stats of everything, I'm barely getting out there...and even more challenges of being the new kid on the block!

So, maybe blogging isnt for me, thinking it's time to hang up my blogging hat.  Or maybe I'll try to reinvent myself, and refocus.  Of course, I welcome any input - whether you comment below, contact me via email through the "contact me" section, or FB page.  One thing I know for sure is I want to be involved in the Celiac/Gluten Free community -but, need to figure out what...and how!  


As they say "taking time to live life will only inspire your work", and I'm hoping to do just that!  It's not goodbye...it's see you later!!  Thank you for all who have followed me while I've tried to find my voice...hopefully I've helped you in someway!  Stay Celiac Strong!!  Xoxo. 





Tuesday, February 17, 2015

Best. Day. Ever


Yesterday was the best. day. ever. for me!  

Last, week, I passed along my blog post on Gluten Free Goodness in Walt Disney World to Disney.  Well...a Disney Guest Experience Service Member called me yesterday to thank me for passing it along and glad to hear we had such a magical trip.  This really and truly beyond made my day...it's truly the little things that matter most. 
With all the gluten free diet mocking going around it sure doesn't affect Disney's magical ways.  Lately,  it  has been a true challenge to go out the eat around homes since at times so many don't  taking the gluten free diet seriously, and truly don't get the impact it has on a Celiac's health.   If only Disney were closer for us to visit more then once a year...or to be able to jump on  Monorail to enjoy a Disney meal!   Thanks to Disney for giving all of us with allergies the faith that  gluten free food can be delicious and safe.  Sometimes we need a little magic...and that phone call yesterday did just that for me!!  

Friday, February 13, 2015

Gluten Free Goodness in Walt Disney World

Our recent trip to Disney was handsdown our best with food!  Don't get me wrong every trip is amazing with food -but, I was sure to try somewhere we had never been every day...except 1!  In case you don't already know, Disney is abolutley outstanding when it comes to food allergies.  All you need to do is mention "allergy" in your reservation, and a chef comes out to speak with you, and go over options.  Typically, the chef brings your meal out themselves, too.  Disney is one of the only places I can truly not have a single worry about food...and so many options!

Before this trip, I discovered the most helpful website:  Gluten Free in Orlando.  Not only does she live in Orlando, she is orginally from Pittsburgh like me!  If your planning a trip to Disney or Orlando, be sure to check out the website...you won't be sorry!!

This trip, we ate breakfast at the Contemp Cafe most mornings...except for after venturing to find Erin McKenna Bakery (formerly called BabyCakes NYC) at the Beach Club resort.
Erin McKenna's Bakery will soon have a new location Downtown Disney, -however, for now, they offer donuts & brownie bites at the Beachclub, and at a kiosk in Animal Kingdom...and more locations listed on their website.

For lunch, we ate light, and just had granola bars I packed with fruit & veggies, or dole whips!  

Now for dinner...here comes the goodness!!  
Disney currently has a few test kitchens with dedicated Gluten Intolerance menus.  Two that we visited were Sci Fi Dine-In Theater Restaurant located in Hollywood Studios and Kona Cafe located in the Polynesian Resort.
At the Sci Fi, we enjoyed chicken wings with honey-chipotle barbecue sauce,  Shrimp pasta for me, and Miss J had grilled Salmon with fries and veggies.


At Kona Cafe, my meal choice was Pan-Asian Noodles, and Grilled Shrimp Skewer for Miss J!

On our evening at Downtown Disney we couldn't pass up one of our favs, and the only place have visited before...Reglan Road Irish Pub & Restaurant.  We had our regular menu items:
Me:  Fish & chips 
Miss J:  Crispy shrimp & fries 
We love Reglans especially since the dances will include the kids with their dance after they perform!  

On our Animal Kingdom day, we devoured our Yak & Yeti meals!  The server, chef, and manager were all simply amazing.  We even enjoyed cheesecake for dessert -but, it disappeared too quickly, and not pictured...sorry!  We all enjoyed the Lettuce Cups. 
Miss J:  Shrimp Lo Mein
Me: Honey Chicken with Brown Rice 

On our Magic Kingdom, we enjoyed eating at The Plaza, where I had my first cheesesteak in over 12 years...and it was amazing!!   Our chef was amazing...when she came to talk to us, she said "I can make anything you want gluten free"; which was Disney Magic to my ears!!  It was our last day so we kept it simple:
Me:  Cheesesteak with fries
Miss J:  ChickenTenders with carrots
Miss J also shared a milkshake with her Dad since they both share the same sweet tooth!!
No doubt we will be visiting many of these same restaurants on our next Disney trip.  The amazing Disney Chefs sure make it tough to come home, and make me dream of their food for days!  

Wednesday, February 11, 2015

Celiac Frustration...please don't mock Gluten Free

Lately, I've been feeling a lot of frustration.  So many are choosing to be Gluten Free for simply diet reasons, and this in turn is causing major problems for Celiacs.  Just in case you aren't aware or familiar with Celiac Disease,  I'm quoting the NFCA since they explain it best:  "Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten.  Celiac disease is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the finger-like villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream, which can lead to malnourishment.  Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer."   Not only does being left untreated cause complication -but, so does frequent contamination.  

Recently, the Gluten Free diet has been being mocked: which makes it tough for a Celiac to be taken seriously.  More and more you see commercials and tv host mocking gluten free.  For example, Ford Fiesta is advertised as being Gluten Free.  Really?!?!  

In addition, there was a big controversy with a Nascar commercial that was supposed to air referring to those who are gluten free being soft.   Thanks to the Gluten Dude making a petition & being such an advocate, and a strong Celiac community, Nascar changed the commercial before airing it during the Super Bowl.  All the mocking Gluten Free gets very frustrating, and is no joke for a Celiac. 

Unfortunately, Celiacs don't have a choice...the only medical treatment is adhering 100% to a Gluten Free diet.  Not only do we have to adhere to the gluten free diet, we have to take extra precautions to ensure food is safe, and free of cross contamination.  Since my diagnosis in 2003, every social setting brings me great anxiety whether it's a family function, eating out...everything involves food!!  Now that the fad diet has brought such a damper to it all, its even worse!  Since my diagnosis, the food has gotten much better -however, social setting have gotten worse.  Anytime I go out to eat, at the select few places I truly trust, I still stress I have an "allergy" and not on the fad diet.  If the proper steps are not taken, I will get very sick...even from a crumb.  

So many don't realize all the precautions a Celiac needs for food preparations.  Our house is 100% Gluten Free, and my true only safe haven!  Not all Celiacs live in a 100% safe haven, and live in a mixed home where extra precautions are required. One of the toughest situations is going to someone else's house for breakfast/lunch/dinner.  In a non-gluten free kitchen there are so many contamination risks -such as, cutting board, pans, condiments, and especially reading all labels.  For example, simply not using a fresh mayo jar could make a Celiac sick.  Why you ask?  When most make a sandwich, they wipe the extra mayo on the knife back into the jar...putting bread crumbs in the mayo.  Yup...those little crumbs would make a Celiac very sick.  The NFCA put tougher a fantastic printable guide for Entertaining a Guest with Celiac Disease.   Simply, click on the blue/purple underlined test to take a look.  Please keep in mind, if you ever invite a Celiac over for dinner, please don't ever get offended if they turn the offer down.  There is a lot of anxiety that comes along with food.  My biggest piece of advise is to invite them to help prepare the meal then you can both work together to ensure a safe meal is made, and all can enjoy!  

Celiac Disease at times takes a long time to diagnose because the symptoms vary and are such a wide range.  For my diagnosis, I was extremely lucky that my PCP suspected it after my initial blood work...and even more lucky since we were in a time crunch due to my wedding being 2-weeks away!  My PCP actually told me she was told to know about Celiac Disease because it would be on her boards -but, she would never see it.  Thank goodness she was very informed, or my wedding day would have been a miserable day! 

Just to give you a little back ground on my story, and how my diagnosis truly saved my life...here is my story:
In 2002, I thought all my gastro problems would be fixed after I had my gallbladder removed...only now I know the surgery triggered my Celiac Gene!  In 2003, weeks before my wedding, I reached out to my PCP in desperation.  At the time, I was making bathroom runs 20 times a day, had a distended stomach, severe fatigue (needed to nap after lunch, and dinner time),  muscle cramps in my calves that would bring me to tears, joint pain, migraines, monthly bouts of iritis, cold sores (huge), and rapidly loosing weight.  My initial blood work showed I was severely malnourished, and severely anemic; which led my PCP to test me for Celiac Disease.  Days later she called to inform me the test did indeed come back positive -so, off to the internet I went to research this "disease" and this new diet I had to follow.  My having monthly bouts of iritis, my ophthalmologist suspected some type of autoimmune disease -but, at the time I didn't have insurance due to being a recent college grad - so, I was unable to afford all the extensive testing...hence, yet again why I was so lucky my PCP figured all out simply with blood work!  Every Celiac has a different story, range of symptoms, and some even have no symptoms.  

My PCP and I decided to be rule breakers and start me on the Gluten Free Diet immediately since I wouldn't be able to get an appointment for the biopsy via endocope for a month.  To be properly diagnosed, you need a positive blood test and positive biopsy.  So, I'm technically not diagnosed by the book since by the time I had the biopsy it came back negative.  I know, we are rebels!!  Within a few days on being Gluten Free, I felt amazing, and it felt darn good not living in a bathroom!  It took me a while to figure out the Gluten Free diet -so, until I did, I went back to the basics of meat (with salt/pepper), fruits, veggies, and potatoes...and M&M's!  Almost 11 years ago, Gluten Free food wasn't nearly as good or accessible as it is today...and eating out didn't happen for me!  It was supposed to be the happiest time of my life, and instead I faced so many challenges -but, quickly got back to good health.  Instead of picking up the phone to order pizza, I had to quickly learn to cook for myself, and new hubby!  At the age of 26, I sure missed the conveniences of take out, and being spontaneous.  So many didn't understand the new life I had to live. Depression hit me quick...I was truly mourning the loss of gluten in my life, and yet so envious of friends and family for being able to be spontaneous in life.  Thankfully, I quickly realized there was no reason to be depressed, and how fortunate I was to have regained my health...and have ALL my symptoms disappear.  Not to mention, the Gluten Free diet is also my only medicine for my Crohn's disease, too.  Yup, I'm the lucky one that has both Celiac Disease & Crohns Disease.  But, on the other hand, so lucky that the Gluten Free diet is the only medicine for both.  

Don't get me wrong, just because I was diagnosed with Celiac almost 12 years ago, and Crohns almost 10 years ago, I still have many struggles.  At times, I'm depressed, and heightened more when I get contaminated.  Even at times, I avoid social settings and stay in my safe haven.  Social anxiety typically gets the best of me since food revolves around everything!  But, thanks to having an amazing support system around me, I pull though...relatively quickly!!
So, with all of this said, PLEASE no longer mock a Gluten Free diet for a Celiacs sake...it's literally saving our life.   For those on the fad diet, please keep on mind your actions can make a big complication for someone who medically needs it.  

For any further information about Celiac Disease, please take a moment to check out NFCA's website:  http://www.celiaccentral.org