A year ago today...

It was one year ago today that I attempted my first gluten free day. I didn’t know for sure that I had Celiac but with an impending biopsy, the certainty of my doctors and my intense desire to feel better I abstained from my sister’s birthday cake exactly one year ago for the first time. I remember the feeling of uncertainty and the hope that perhaps I didn’t have to do this for the rest of my life. My family had run out to purchase a cacophony of gluten free products in preparation for the birthday meal. We tried many together, some not so bad, some unbelievably terrible.

So as I reflect on one year it’s hard to believe how difficult it truly was to get to this point. The things they didn’t tell you to expect, like a gluten withdraw of insane proportions that leaves you feeling ten times worse then you ever did before. Or the countless conversations with waitstaff trying to explain what you need and that you’re not trying to be a pain on purpose. The skin problems and the joint problems and the anemia. The countless doctor visits that leave you feeling alone and uncertain of anyone’s understanding of this disease.

But those aren’t the things that stand out to me as much as I would think. What stands out is the number of people I’m come across that have gone out of their way to support and help me during this transition. The fact that my mom went gluten free with me every time we went out, during the first few (and most difficult) months. My family in general who scour grocery stores like I do and note any new products that look promising and who show up to walk my dog when I can’t get out of bed.  My sister and law who is normally mild mannered and soft-spoken but goes into mama bear mode when a restaurant has put my health at risk with poor gluten handling measures. My boyfriend who looked at me when my skin crusted over and I couldn’t eat or drink without pain but still told me I was beautiful. And the doctors and team of consummate professionals at the Celiac Center in New York who made me feel like I was understood and able to be helped.

This year has been the hardest I’ve ever had health wise and at times I wasn’t sure how I could keep moving forward. But here I am at the start of a new one and I know so many more people now that are pushing every day to live through this, and countless people that are working in their own way to make it easier for each of us. So no matter where you are in your journey, from exactly 12 months in, I encourage you with this, you are stronger than you ever thought possible and there are legions of us fighting with you and for you. May this year be your best.

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!  

Food, it Humbles us All

I write a lot about Celiac because it's so cool and chic. I mean, who wouldn't want this amazing disease? But today I thought we'd venture out into another eating problem that can be debilitating and embarrassing. You or someone you love has probably suffered from it at one time, and the worst part is, you may have not even known! 

That's right, I'm talking about the "food stuck in your teeth" ailment. This affliction is not only debilatating for the individual that suffers but also for everyone around them! Let me paint a scenario for you. There you are with a friend or even worse, a date! The ambience is perfect, the lighting low, the waitstaff attentive to your every need. You look down at your plate that has just arrived, perfectly presented in the flickering candlelight. You grab your silverware and prepare to take the first bite, lifting it to your lips and looking into your companion's eyes but, GAH!!!!! You can't look in your companion's eyes because you are immediately drawn to their teeth. What used to be pearly whites are now pearly whites being massively invaded by flowery green! Or worse, black!

Inside, you panic. The stress is now destroying your once happy meal. You try again with another bite, looking down and hoping that when you raise your eyes once more the situation will have resolved itself. You take your time, pretending you have a need to get the "perfect" bite onto your fork. You slowly, carefully raise your eyes again and, OH GOD!!!! The situation has managed to get worse!

Not to fear, I am here to help you in these times of great distress and have created a three point scale complete with steps of action.  

Scenario 1: Your companion has a small discoloration lodged between their teeth. Perhaps pepper or a similar sized spice. 

Action: DO NOTHING. I assure you, a tiny object will most likely be noticed by your companion and rectified on their next trip to the bathroom. If you attempt to fix this situation at the given table, it will end in multiple gestures of "here, no not there" followed by your desire to reach across the table and use your fingers in your companion's mouth. This is not acceptable. Therefore, I repeat, do nothing.  

Scenario 2: Your companion has a large discoloration lodged between their teeth or perhaps resting comfortably on top of their teeth.  

Action: Kindly and ever so softly as to not draw attention to the entire world whisper, "Oh, looks like you have a little something something" as you point appropriately, to the offending area using your own mouth as a road map. If you do not take some action, when your companion is alerted to the situation themselves either through the person across the room that can make it out, or on their next trip to the bathroom, they will despise you for letting them look like a moron. Understandable.  

Scenario 3: Your companion chose poorly, ordered black bean soup with large chunks of cilantro and now has a mouth that more closely resembles brown m and m's than white chiclets. 

Action: Excuse yourself and wait in bathroom approximately thirty minutes until your companion  finishes eating, gets bored and hopefully (dear God, hopefully) checks their teeth or utilizes a toothpick. 

So, perhaps my suggestions are not perfected but it's nice to know that it's not just us Celiac's making dining out an adventure. Happy eating to us all! 

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!

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! 

I'm Sorry I Let You Down

I can honestly say that the worst thing about Celiac is not just all the food you won't eat. Sure, you'll miss a fresh, toasted bagel from your local sandwich shop. And you will definitely miss the desserts that you'll watch everyone else eat at parties and at your favorite restaurant. That part sucks. But for me, the worst part about Celiac is letting everyone down around you.

It's not intentional and everyone "understands" but it happens just the same. It happens when you skip out on lunches, with the coworker that you've had standing  Monday lunch plans with for almost four years. Now he's wracking up loyalty stamps at the mall stands that pass out tiny pieces of meat on toothpicks.

And it happens because you and your brother used to bond over impromptu sushi dinners and when he forgets again and suggests it, you have to remind him you can't go out because you're still avoiding gluten... and rice... and seaweed because you might be allergic to those things too.

It happens when you find yourself snapping at your mom because she suggests asking the doctors one more time and you respond in frustration, "Stop telling me that, they all say the same thing!"

It happens when you call into work one more day because the pain is so bad, you have trouble getting out of bed. And it takes a full day before you return to "normal".

And worst of all, it happens when your boyfriend can't wait to see you for a date night, but instead of getting the old you, he gets the you that's reached her breaking point and breaks into tears all night over the pain and the loss she feels everyday.

I said before that I believe it's important to look at the positive and rise to the challenge. And I try to everyday. But I wouldn't be genuine if I didn't say this is hard. At times, almost impossible. And it has nothing to do with bread.

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.

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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!

Whole Food Challenges

The cool thing about going on a whole foods diet is the realization that even what I considered to be a "healthy" diet before had room for improvement. And when I say improvement, I mean like trash to treasure level!  

My weekly shopping trips now had me focused on 1/16th of the store at best! As you walk through aisle after aisle, it's eye opening to realize how much of our food comes in a box! And worse still, how many of those boxes have ingredients that are unidentifiable.

It's hard to believe that eating only real food would present a challenge but it's true. That fact alone helped motivate me to keep going! Aren't we supposed to be eating real food??? So just in case, you're thinking of joining the few, the proud, the hangry... here are my tips for starting (and finishing) a whole food challenge. 

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1. Meal prep. No joke, decide what you're going to eat in advance and don't depend on any fast restaurant options to save you in your time of need.  

2. Try not to cry. Believe me, you will want to cry but no one ever died trying to eat healthy. Well, they may have but chances are the healthy part was unrelated. 

3. Respect the process. You may face withdrawals, headaches, tummy aches, etc. (in this case, refer to step two) but that is actually good! You're giving your body a chance to heal and healing can be painful! 

4. Be gentle with yourself and find other ways to celebrate or relax. Our culture and habits center a lot around food but a night out or glass of wine isn't what matters, it's being with friends and family to begin with! You can do that with water as easily as wine. Or, better still, try a new class or activity together instead of the same old place. Yoga anyone?

5. Enlist friends! Misery loves company! I mean... the more the merrier! And if your friends don't want to suffer along, find a local group or Facebook page. Not only are there nice people out there but hearing others experiences, ideas, recipes, etc. can go a long way when you're thinking about giving up!

Happy eating friends! 

Makis Place ⭐️

Learning of a new sushi place in the neighborhood is like finding out Christmas is coming a month early. The excitement heightens as you count down each day! My brother, being a sushi afficionado such as myself, was just as excited. We'd drive by, we'd walk by, we'd check their Facebook page! If this place were a human, we'd have been arrested for stalking. 

Makis touts a different take on sushi, selling primarily temaki, which are large hand rolls (think sushi burrito!). So needless to say, we were excited!

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When they finally opened, we visited late in the evening. The place was empty except for one table with what appeared to be the owners, working with the kitchen staff as they shuffled papers.  

The waiter came over, seemingly as excited as we were, joyfully walking us through the menu. I told him, as I now do many wait staff across Orlando, that I had Celiac disease and asked for suggestions on what might work.  

He wasn't sure but quickly offered to check before walking over to the table where restaurant business was in full swing. The bad thing about an empty restaurant that night was that the conversation was easily overheard and the answer to "what gluten free options do we have?" was simply, "we don't have anything for that".  

And so here my review ends abruptly, like any hopes of future meals at Makis Place. I'd like to say a little more thought was given, or even that the owner took the time to walk over and offer an empathetic explanation, but the issue was opened and closed in under ten seconds. For what it's worth, my brother quite enjoyed his meal and I imagine will become a regular patron. But in the meantime, my one star remains, solely for the great waiter who was a pleasure to have around, at least until he told me there was nothing for me there.  

A Whole 30 Journey...

After turning to every doctor, support group and nutritional counselor I could find (and that would listen), I decided something drastic had to be done. I was fighting an uphill battle of symptoms and getting no where fast. Clearly, just "gluten free" wasn't enough, unless the detox period was over three months (of course that was anyone's guess)! 

A common suggestion I had heard, across all the experts I talked to, was to embark on an auto-immune diet for one to two months. The theory as I understood it was that my body may be sensitive (you think!?) and reacting to a NUMBER of inflammatory foods, not just gluten.  By cutting everything out, you allow healing and after that period is done, you can introduce a food in one by one to get to the diet you'll need for the rest of your life. S**t was about to get real. 

Although I would need to be slightly stricter, the closest diet to use as a reference was one called the "Whole 30".  This was a no (added) sugar, no gluten, no dairy, no processed food, no beans, no legumes, no alcohol, no kidding diet. On top of that, I would be restricting anything processed in a factory, eliminating caffeine and remaining pescatarian (a vegetarian who eats fish). 

As a sign of solidarity my boyfriend and brother's girlfriend committed to the 30 days with me. We were the three amigos and together could not fail! Or... so we thought! 

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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. 

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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... 

Firebirds ⭐️⭐️⭐️⭐️⭐️

It didn’t take long to fall in love with a new restaurant in the Mills area of Orlando. Firebirds stands out as you drive past it, boasting a modern brick design and large outdoor patio. With my good friend in town from San Diego, I decided to give it a try, hoping it would be up to the “foodie” standards of California.

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When you walk in, the high ceilings, impressive bar (with items organized by color along the back wall) and bright pops of orange throughout make you feel like you’ve stepped into a place designed with every detail in mind. My friend and I chose a high top table with bright pillows and a nearby built in fireplace. From start to finish, we were catered to by a friendly and knowledgeable staff (one of whom shared tips from his training), “Never say no to a customer”.

The separate menu full of gluten free options was amazing. I decided to start with a fruity mojito (it was happy hour after all), which definitely made it to the top ten list of best drinks I’ve ever had. And for dinner, I chose a strawberry shrimp salad and side of mashed potatoes. This would be a great time to share a picture with you, but it looked so fantastic I dove right in and was NOT disappointed. If I had to find any negative, I’d say the salad was a little heavy on the dressing, but the taste was so delicious it would be hard to fault having a little extra.

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So, if you like good food, a friendly staff, amazing drinks or just sitting down in a relaxing and beautiful atmosphere, Firebirds is the place to be. You’ll probably see me there, right next to the fireplace. If not, that’s ok… more for me!