I'm Backkkkk!

Last year this blog focused on going through the initial diagnosis (and subsequent painful withdrawals of gluten) and this year I've been mostly quiet. My friends and family may tell you to count your blessings for that but without further ado - I'm back!!! And it's time to switch gears - just a little.

I'm officially past - although some days it doesn't feel it - the initial diagnosis and trying to find out how to live with Celiac. Even still, after adding numerous concoctions and potions to ease the pains, I keep learning. More and more and more. For example, did you know that if you're adding tumeric to your smoothie in hopes of some anti-inflammatory assistance, you've got to add black pepper? I literally found that one out today!! You can bet it will be an addition in tomorrow morning's smoothie.

But there's another aspect to living with Celiac. And for me, it's how to remain positive. Going through year one was so intense, there wasn't much thought given to what happens next. Next being for example, the rest of my life! But here I am and I'm trying to figure it all out. I started searching for some happy Celiac swag and instead came across a few shirts. Some so plain that this wannabe fashionista shed a tear and some so negative (perhaps you've seen this one - "I can't eat gluten - that's why I'm a b*itch") that I completely gave up. Until I realized, perhaps there were more Celiac and gluten free peeps that wanted what I wanted. And now that I wasn't spending ALLLLL my energy on being sick, maybe I could do something about it.

So yeah. I did. Celiac Cutie was born and I am suddenly a business owner. Wait - what?! This blog is officially and unapologetically about my life and whether I like it or not - my life = Celiac. But now, shifting gears means you're gonna take a ride into the world of being a Celiac who's also trying to start a business and travel the country selling soft funny tees and gluten free "swag". I'm hoping it will be fun and more importantly, that through this process a community will be born. One that's less "F Gluten" and more - "let's just have a little fun". I hope you're in - cause I'm not really sure how you unsubscribe anyways...

Bartacos ⭐️⭐️⭐️⭐️⭐️

It was a random Tuesday night when a friend and I decided to search Yelp for a dinner suggestion nearby. Up popped a new restaurant called Bartacos which I pronounced “Bart-a-goes”. It took the random kindness of someone overhearing nearby to correct me and explain the name was actually pronounced “Bar-tacos”. Hmmm, given that this was a taco place, I concurred that her suggestion made much more sense.

Walking in, the restaurant was set up like a modern style home (but much bigger) with an expansive bookshelf, low seating, wall seating and booths all accented by handsome beach décor. I really hoped the food was good because I was already looking forward to frequenting this new found gem.

Once seated, the process was explained. The ordering was much like a sushi bar where you complete your choices on a tiny piece of paper before turning it in. Making my selection took some time because all of the tacos were (or could be modified to be) gluten free. I repeat, I could eat almost anything on the menu!

I settled on a spicy shrimp taco and two mushroom tacos, one traditional and one in a lettuce wrap at our server’s suggestion. They arrived family style, tiny tacos lining our tray, and I didn’t hesitate to dig in. Not only was the presentation perfect, the taste was fantastic. With a great atmosphere, awesome service and tasty little gluten free tacos, this place gets five stars. And by the way, just a tip - it’s pronounced “Bar-tacos” : )

This pic is from my second visit!  

This pic is from my second visit!  

Life, New Years and Such

Have you ever stopped to reflect on what your ten year old self would think of you today? This year of 2016 and all it's challenges (I hate you Celiac) has finally come to an end. I had a lot of time over the holidays to stop and breathe. To refocus and to rest. I began to realize that life gets in the way of a lot of important things. It's not so much to say that life stops being good, it's just that the good sometimes becomes overwhelming and becomes bad. A job is important, relationships are important, heck - bills are important! But when they become EVERYTHING, it is easy to lose yourself in the mix, especially when everyone around you is focused on real life problems too. 

I am not who I thought I would be when I was ten. Inside, I'm still there, I can feel it. But along the way I make compromises. Tiny little changes, nothing significant. I stay later at work to ensure I keep my job. I make concessions in relationships to keep the peace. I live places convenient to responsibilities rather than where I really want to. I lose sleep to keep up with life's demands even when my body is desperate to rest. It's like turning the steering wheel a tiny fraction. As you're driving it doesn't matter, you're still going in the general direction. Until, it starts to add up like a heavy snow fall that happened one tiny snowflake at a time and suddenly you are off the road and headed for a ditch (I'm in a very dramatic mood today, can you tell!?).  

So this week, month or year, whenever you can squeeze yourself out a break from real "life", I encourage you to stop and resurrect your ten your old (they're happy to come back, really). How do you do this? As such...  

1. Take some time for you - just you. Visit a coffee shop, take a walk, kick everyone out of the house and secure the doors with something heavy! 

2. Reflect on what is most important to you. And take inventory on how much time those priorities are getting. Do you sacrifice your health for the sake of others? Do you spend as much time as you want with your loved ones? Are you enjoying any good ole plain fun? 

3. Think like a kid. What would you do if you could (screw time, money and judgment)? What would you say to the people in your life if you knew they'd take it exceedingly well (are you holding back what you feel to "keep the peace" cause that sh*t will eat you alive)! 

4. Add one hour to your week to do what YOU want to do. It may be sleeping, it may be visiting a loved one, it may be going to a playground and running around like an idiot. Don't stop and apologize for what you want to do - don't come up with reasons it won't work - don't ask permission, just go! 

5. Repeat often. This isn't about being selfish, it's about being you! The best you possible! When you connect with yourself again, it radiates out from you and better supports all the other responsibilities of real life! Encourage others to do the same.... We could all use a little more childlike fun so make your ten your old self proud. And Happy New Year. 

Nutrition 101

My second stop at the Celiac Center was with a nutritionist who started by asking what I was "in for" so to speak. Like a new inmate, Celiac didn't come with an orange jersey but one could argue it had its own set of shackles. 

I showed her my food journal and explained my progression from pescatarian to gluten free, to Whole 30, to low iodine. All cumulative, never stopping any restrictions, only adding. She was a wealth of information, guiding me not only on what I could eat but also what I SHOULD eat. And she offered creative suggestions to get more nutrients without undoing the benefits. For example, trying to maintain low iodine would continue (since it was the only time my face rash saw any relief) but adding one regular egg to two egg whites would boost my protein and still maintain a lower iodine diet overall. 

She encouraged me on the journey, sharing that over time (and decreased inflammation internally) the restrictions could decrease. She even made a few restaurant suggestions that all sounded pretty delicious.  

The best thing about my meetings was that no one was rushed. We sat around the table like old friends and I got more answers in two hours than I have in six months with well intentioned, but uneducated in the field, local doctors.  

Before we left, she copied a few pages from my food journal for review and let me know I could reach out with any problems or questions. It was like I was part of a team now, not only one who was supportive, but one who knew all the plays in the playbook. Next up, the dermatologist!

Celiac Center Lab Rat

The time had finally come. I was in New York and I had arrived at Columbia University, more specifically, the Celiac Center. I was ready to be poked, prodded and tested like a scientific lab rat. Whatever it took to get some answers!

image.jpg

I got nervous as I walked down the narrow hall, dated by the carpet and dark brown chairs that lined the walls. Entering the tiny office with four desks I gave the usual personal information and was handed paperwork to begin the process. 

I sat down and waited a short time before being called back to a different office and introduced to my doctor. I started talking nervously, holding one hand in the other while trying to explain my struggle of the last few months and hoping she didn't repeat what I'd already heard from other doctors. "Eat gluten free and everything will be fine". I had so much hinging on this trip and it weighed heavily on the response of this young doctor with kind eyes and long flowing black hair. 

She listened graciously as she flipped through the mound of records I'd brought with me, asking questions where appropriate. I learned many things through the course of the conversation, a couple of them listed below.  

* I had a severe case and may be unresponsive to a gluten free diet, as a small percentage of celiacs are. 

* There was also a possibility I could still be getting gluten and there was a test for that! 

* I needed a bone density test to evaluate my current state and osteoporosis risk.  

* Healing could take a year to two and although my body was responding drastically to eliminating gluten, with time, the severity of my symptoms should lessen.  

* My family was at risk and needed to be tested. 

* There would be some poking, some prodding... But most importantly. There would be help. 

They may not have been all good, but they were answers and hope for real solutions. They were help. And this was only my first appointment! 

New York is Calling!

It had been a busy day and I just needed to swing by the grocery store and grab a few items for dinner. Instead of pushing a cart, I grabbed a little basket and stuck my arm through the handles, throwing my purse, sunglasses, keys and phone into it in the process, filling the basket halfway. 

I was in a rush and went directly to the fruits and veggies section, the mainstay of my diet these days. Soon I was lugging around a basket full of potatoes, onions, mushrooms, spinach, avocados, grapes, apples, bananas... You get the picture! My arm was developing deep red grooves from the handles as I made my way to the registers. Just a little further... 

It was then I heard my phone ring and started digging through the basket of goodness. "Got it"! It was a 212 area code but unidentified number. NYC was calling. I hit the green button and answered out of sheer curiosity.

"Ms. Miller?"

"Yes" .

"I'm calling from the Celiac Disease Center at Columbia University and I understand you'd like to come visit us. I can help you with that". 

I could've cried! Finally, someone that could help after months of making calls to Celiac Centers around the country. I rapidly took down notes on a random piece of paper from my purse. I would need to call another number and tell them who I had spoken to. They could transfer my information and then book appointments with all the specialists. I hung up the phone in a daze, more excited than if I had just won Publishers Clearing House!  

I rushed to check out and get home. I needed to tell everyone! I needed to book a flight! I needed to calm down!!! 

It was halfway through unloading my basket that I realized I had rushed off so fast I left the paper at the counter where I had initially stopped! Frantically, I retraced my steps and found the names and numbers I would need. Phew! It had started as a normal day but now it was incredible. I was headed to New York! 

Juice'd ⭐️⭐️⭐️⭐️⭐️

After seeing so many posts, pictures and blogs about a new place in Orlando called Juice’d, I finally had the opportunity to visit this Sunday. The founders stress their desire on the website to offer healthy food and beverage alternatives to what exists elsewhere. You can find cold pressed juices, smoothies, salads and my preferred choice, smoothie bowls.

Walking in you see a clean and modern environment, complete with a green lush back wall, like nature itself can’t stay away! Although they advertise gluten free, along with “100% organic, GMO free and locally sourced”, I wasn’t exactly sure what my options might be. I started asking about the PB Acai bowl and found they were happy to omit the granola and substitute almond butter for peanut butter (since I was still avoiding peanuts in my auto-immune diet).

I took a seat in the corner, sunlight shining through the large window, and waited for the most beautiful acai bowl I’ve ever seen.

image.jpg

Anytime I'm out and have to make substitutions to a dish, I know the flavor may be off a bit, but to my surprise, it was amazing! Not too sweet, and the consistency of frozen yogurt, my only disappointment was that I live twenty minutes away and can't visit every day!

I would like to say I’ll try the salads and the smoothies one day, but I’m not sure. I will say, five stars for the smoothie bowl. If you’re in the area, don’t miss it!

Why Me

This past week was a good reset button for me. Albeit, I hadn’t intended to push it just yet! After traveling to Tampa, FL for work I had planned to visit my parents for dinner and then head further South for another work trip. By the time I arrived to their house however, I was a heavy footed, bleary eye “patient”, struggling to make it to the couch. By the next morning my mom was driving me to the emergency care center nearby.

Given that my system is in a state of constant inflammation, be it acute (Celiac = stomach distress) or delayed (Dermatitis Herpetiformis = skin distress), it comes as no surprise that a simple cold bug infected my chest in record time, leading to difficulty breathing. I went from sounding human to sounding like a raspy goose overnight!

The frustration as I lay comatose on the coach for the next two days was palpable. I was already struggling with painful stomach cramps and blistering skin rashes daily,hourly even. Now this…

My parents continued to take excellent care of me, which I was exceedingly thankful for. And my work was supportive, calling to check in and make sure I was still alive (and coming back!).

But it was when I returned home that I asked “why me” and not in the way you might think. As I sorted through the stack of mail that had piled up while I was gone, I noticed a card. It was unexpected, as most personal mail is these days, and from an employee of mine. I read through the note where she shared she was praying for me, how she knew we were only given challenges we could overcome and how much she admired that no matter what I always had a smile on my face, even when it cracked skin to do so. It made me think.

If I was given this challenge, I wanted to rise to the occasion. I wanted to overcome it and be the positive force she thought she saw. Why do we go through something if not to help others? I couldn’t make it most days without the support groups online that chatted with each other, shared their experiences and encouraged each other. And I definitely couldn’t make it without the bloggers sharing recipes and restaurants willing to risk liability to create some tasty options for those of use stuck in the celiac boat. Most days I feel like I could do without my doctors since they seem to be limited in their knowledge, but truth be told, even they give me some comfort.

image.jpg

So, with that mindset I went through the next few days eager to see the challenge ahead of me. How could I help someone else? What could I learn? Why was I given this disease? I know everyone suffers from something, and everyone has a story. But don’t stop at asking “why me” with sadness or despair, take some time to ask “why me” with a focus on the positive. You may never know who is watching you go through your journey. But it doesn’t mean your life and your strength is going unnoticed. So, go ahead and ask, why YOU?

Pizza Delivery, at its creepiest....

This past Tuesday I decided to drive down to Fort Myers, FL for a meeting scheduled for the following morning. I knew it meant a night away from home, but it also meant I would not be driving down the highway at 4am Wednesday morning, inflicting emotional trauma on drivers around me as they watched me nod off! 

It was late in the evening when I landed at my hotel and I was anxious to eat and sleep. Unfortunately, my plans didn't go exactly as I thought they would. When I asked the hotel what they might have available for someone maintaining a gluten-free diet, all I got back was "nothing"........... Hmm....

Since "nothing" wasn't exactly what I had hoped for, I decided to do a Google search immediately. After making a few calls, and reviewing more than a few online menus, I settled on a small upscale pizza parlor that had not only a gluten-free menu, but also would deliver! 

Enter dilemma two. At this point it was 9 PM and my stomach was growling. But when I called and spoke to the first employee at the restaurant, they seemed to be a little overwhelmed with my request. Fortunately, what sounded like a manager came on the line next. He assured me they could do a gluten free personal size pizza with a salad and even a drink to go. The only problem was they were in the midst of making the batches of dough for the next morning, so in order to ensure an allergy safe pizza, they needed to clean up the space and it would take about an hour and a half before I was seeing any semblance of dinner. Since pizza.... Or, well... PIZZA was my only option I decided I'd wait. The manager said he'd send my order out with someone at the end of their shift so I thanked him and began the search to find something to fill my wait time.  

Just about the time my will to live was ending, my cell phone rang! It was the same employee I'd talked to earlier and he was delivering my meal personally! What service! I met him in the lobby and he was overly friendly, I figured because I had tipped him about 35% for his efforts to keep me fed. 

image.jpg

It was about twenty minutes later that my cell phone rang again, now well into the late evening hours. I recognized the number from the pizza guy. "Odd, I'll just let it go to voicemail and see if maybe he charged me wrong or something"... When he didn't leave a voicemail, I figured it was nothing. But now at 11pm, my phone starts buzzing again with a message from the same number! "Just checking to see how your dinner was. It's me, pizza guy (not exact quote, he used his name : ). Hope your night is great." Now some of you may be thinking, "That's not creepy, it's sweet." But here's the actual truth and a tip for anyone delivering food. If you happen to deliver to a single gal in a hotel and (because it's required for her order) you score her cell number, don't use it to check in on her at 11pm at night!!! I locked my door and triple checked it at least five times, kicking myself for giving out my room number on the initial call. 

On the bright side, my meal was pretty fantastic...