Finding a friend...

When my mom mentioned a gluten free event in her area (with FOOD), I decided to take a look. Shortly thereafter, I was attending a "Gluten Free Tasting" held in Clearwater, FL. It was hosted by a small gluten free business that focuses on awareness, marketing and general gluten free goodness (Gluten Away is the company name - what's not to like about that?). I wasn’t sure what to expect walking in and was surprised to be so warmly greeted by the team there.  While my family meandered onto the main event (um yes, food!), I stood and talked with the host, and then her son. They both had Celiac and they both understood what I can never fully convey to anyone without it. My questions rolled out like heavy waves, consistent and sloppy. “Do you feel this”, “have you ever felt that”, “what do you do when this happens”??? It was pathetic and wonderful at the same time and I realized that sometimes, you just gotta find a friend!

Attending my first (of what would become many) gluten free event made me realize that life is just not meant to be lived alone. Not that I do by any means. I have more than a handful of close friends and family that I am blessed beyond measure to call mine. But, in that instant, there was something that connected these new people with me, something people without Celiac can empathize with but never fully know. You may explain to people what it’s like to be tired after bringing a new baby home. But in an instant of meeting another mom with a newborn you can stop explaining. They get it!

And so as my transition begins of starting a business focused on community, I would encourage you to branch out and meet some new people. You don’t have to have Celiac (or a newborn for that matter), you could just be wondering how to be a woman in this crazy world. Or, how to transition from college life to a full-fledged adult. Whatever the case may be, I am telling you it is worth taking some time to talk to people living in your shoes. That being said, be picky! I don’t take a lot of gluten free advice from the waitstaff that thinks it means organic ingredients and I wouldn’t want career advice from someone who is living in their parent’s basement playing video games most of the day. Find someone that knows a little something about where you are and is a solid, positive influence for you. And then, when you’ve learned a little something, take the time to pass it on to someone else. What’s the harm? We could all use a little extra karma : )

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...

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!  

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. 

Tests - Take Two!

Recently, my legs started breaking out again and I was soon covered in itchy red bumps from knee to ankle. Fun!

I quickly called my new found doctors in New York and asked them what to do. The response was "Get a biopsy quick". So I found myself back in the waiting room of my local dermatologist. It didn't take long to get shuffled back to a room by the nurse who carried my chart like a heavy suitcase. I was not new to this office.   

After the friendly nurse practitioner walked through my history she stepped out to pull the head doctor into the room. He recognized the name of my New York City specialist immediately and had actually trained under him at some point so he was happy to follow the recommendation and wondered how I'd managed to get in with him (I didn't mention the countless calls, prayers and flower deliveries it took... Ok the flowers might be an exaggeration).  

This time they wanted to be safe and we would take TWO biopsies (who needs pretty legs anyways - OVERRATED, that's what I say). I waited impatiently for the results which took two weeks. My phone finally rang as I pulled into the parking lot of Space Camp in Alabama (a long awaited vacation spot for my boyfriend and an entirely different story).  

"Ms. Miller, this is so and so from so and so's office and I have your results."

"Ok", I said as I sat rigidly in my car, bracing myself for the results.  

"It was actually a severe reaction to a bug bite. We don't know what type of bug, it actually could of been anything but we don't think it's related to Celiac and we can't really stop it from happening again because it's a very strong reaction to whatever it was. You may still have dermatitis herpetiformis too, we just can't be sure. We can only be sure that this was a bug bite reaction. And we'll have to biopsy any reactions in the future to determine what they are." 

I hung up the phone and my boyfriend who was sitting next to me reached out to grab my hand. "Are you ok? I literally watched your shoulders drop as you were talking to her." 

The problem was that I had finally accepted that I had dermatitis herpetiformis and as awful as it was, the diagnosis was mine. I didn't have to worry or wonder anymore what was violating my skin and my life, I knew. But the truth is nothing is ever final and I was back at square one. 

Comfy Pants

I've never purchased a pair of sweatpants before. Not in my life, not even when I lived in Chicago and froze every winter. I'm more of a dress and heels kind of gal, only recently balancing the closet out with a few more jeans (and then a couple more heels too). But as of today, I can no longer say that.

I've always been extremely hardheaded about doing what I want when I want. And that includes remaining active against my body's constant requests to take it easy and rest. It's hard to do when you don't want to give in, because it feels a little too like giving up. But after a day like yesterday when my body kept moving but my head checked out, I was forced to reconsider.

It's easy to blame everything on Celiac because ask around and you'll find others with this auto-immune disease suffering from the same thing, no matter the symptom. It's just that type of disease that affects so many aspects of your body and life. So, I don't know if it is or it isn't but becoming so severely foggy headed that you hear people and you see people but you can't interact is one of the many frustrating things that has been a part of this year for me. And it just so happened that this time I was at the gym with my boyfriend and good friend, both of which were concerned. I could hear a hushed conversation as I took my turn in the squat rack. I focused on the heavy bar on my neck. The mirror in front of me grew blurry as I went through my set. I couldn't make out their words but I knew they were still talking, talking about what might be wrong. I was only a few feet from them but I was miles away. 

It was later that night after it finally passed that my boyfriend wrapped me in his arms and asked me to please slow down. We talked about how scary it is, for both of us to be standing physically close but mentally like I was on another planet.

So, this morning, for the first time in a long time, I slept in. Well... That's not entirely true. I woke up at seven after going to bed around 1am and was getting ready to get a run in. (What can I say, old habits die hard!). But I stopped and went back inside. I laid down and tried to go back to sleep. I didn't think it would work but at my boyfriend's request, I was going to TRY to give my body a break.

Of no surprise to anyone but myself, it did work. And I woke up feeling rested and entirely like my old self for the first time in a long time.

And so today, as I walking through a store looking for something else I passed a pair of "sweat pants". They called to me with their gray drawstring ELASTIC waist and pink painted flowers. They said, "We are just what you need today." And as I sit here, with no heels, no fuss and my flowered sweat pants as comfy as comfy could be I realize something. They were right.

Listening to the ones who love you, the boyfriends, the friends, the family is hard. It's hard to realize that sometimes you are not strong. Sometimes you need to take a break, not push harder. So from one stubborn minded person to any of you needing to hear it, do take care of yourself. And in case you are like me and just didn't realize it, sweat pants are, I mean really are, comfy.

BACK at it!

The next round of testing was called patch testing. I was about to undergo a week long process, the first step being a review of allllll my products. That's right, I became an airport employee's worst nightmare. Liquids? Yes. Aerosols? Yes. The entire contents of your bathroom? Yes.  

The first day, the doctor and his team set off to find the ingredients list for all of my belongings. Which meant by visit number two, they would be ready cover me in tiny little activated samples of my own products and many many many more. Some of these patches would need to be exposed to light so along with being covered for days, I was also lead into a "light box" on day two. This was an interesting experience in and of itself because it's a tiny space and lined top to bottom with lights that heat you up. I felt very close to bread after this, imagining that this MUST be what it feels like to be stuck in a toaster. Poor little toast!

On top of that, your skin has to be (mostly) covered except for what you're purposely exposing. I was cool with getting a sheet wrapped around my feet and hands but then we got to the last step. The last step is is putting a pillow case OVER YOUR HEAD. Sure, that's not the least bit scary... I think it's very important to note that none of this was mentioned prior to my arrival in New York. I've learned you have to watch doctors, they are a bit tricky. 

Throughout the week I got a bit itchier but honestly the hardest part (besides exposing your bum to everyone - yes, they were on my bum too - yes, this is a teaching hospital) is that you can't take a shower from Monday to Friday. My dear sweet mom was willing to wash my hair in the tub daily thank goodness, but it's really no substitute for a shower. I'm not going to say people left when I got on the subway but Friday couldn't come soon enough! For now, here's a picture of exactly what went into this testing. Good times!

 

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NYC Round 2!

My second trip to New York for "research" was accompanied by my mom. I have never traveled with my mom and in fact, she has never (yes, in their entire marriage of 35+ years) spent as much time away from my dad as she would on this trip. They have done everything together (by choice!) including raising my siblings and then traveling together and even living abroad (possibly to escape my siblings and I, I'm still not sure about that)... So after the first day of getting delayed hours at the airport then trekking our bags through the subway after midnight, then getting lost because one of the connections had been shut down, I was not sure she would be with me for more abuse.. er, um... "Fun" come day 2. But, like the trooper she is, we slept our two hours and were up again to head to the Celiac Center for a "breath test". 

The hardest part about this test was the prep. For 24 hours before, there were no allowable fruits or veggies limiting the one meal I would have to plain white rice with plain salmon. YUM! As for the morning of the test, there would be nothing, not even the water and toothpaste to brush your teeth! 

The test itself simply involved breathing into a small handheld tube (similar to an asthma test) regularly over a period of three hours. That's it! Aside from avoiding boredom and trying to stop your brain from thinking about food, it is a CAKE walk (as you might have guessed, I had trouble not thinking about food!) 

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The point of the test is to measure bacteria in your stomach and see if perhaps it has gotten out of whack, causing symptoms that may be consistent with Celiac (bloating, gas, etc. - all the fun stuff!)

I'm still waiting on a call from my doctor to find out exactly what the results showed but the tech administering the test didn't seem to see anything of alarm. And although I should be happy to have "normal" results, as opposed to a gut full of bacteria,  I am not sure what it leaves as an explanation for the continuing symptoms. If you have Celiac and are still having discomfort regularly this may be something to ask your doctor about. It's not difficult, just don't think about food.... Or cake...

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! 

Let's Face it!

The worst pain and most disturbing physical side effect from DH was experienced on my face. So I was anxiously awaiting my trip to the dermatologist and hopefully some answers. I waited (not) patiently in the front room before finally being called back. The doctor was young (or maybe just looked young, you never can tell with those dermatologists!). Since I had lowered iodine in my diet, my face had for the first time in three months finally began the healing process! Fortunately, I had pictures! Many, many pictures!!

I will share one below but brace yourself - it's not pretty! And for heavens sake, don't show anyone else. I have a reputation to maintain. It's not going well, but still..... 

Within minutes, my baby Doctor had looked at my back (where a rash had just popped up), face and pictures, and confirmed three things.

1. I had a typical presentation of DH on my back.  

2. My pictures were terrifying (I tried to warn you)! 

3. My face was NOT a typical presentation of DH. 

WHAT???? 

To put it in her words, I could just have bad luck. Well, tell me something I don't know doc!  So just in case I wasn't feeling challenged enough with a Celiac and DH diagnosis, I could possibly have something else.

Like what you ask? Well.... Allergic to my hair perhaps? Fortunately, not "baboon syndrome"... Don't google it... But thank God we ruled it out! A hex from a disgruntled co-worker? Ok, she didn't actually suggest that one. But she did say it was improbable the iodine made it better because that allergy would be so unlikely, "I'd probably be dead by now". Now there's some good news!

More testing was needed and my "vacation" was coming to an end. Hence, in another week I will be heading back to NYC for round two. So my friends, more to come and as promised, a selfie like no other. The filter is there for your own good, swollen inflamed patches look much less scary when they are not bright blood red. You're welcome. 

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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!

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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! 

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!

Eat Worms

I saw an article this week that caught my eye. That was because for the very first time it mentioned a successful treatment for Celiac Disease! Everything I’d been told up to this point is that a strict gluten free diet is one’s only hope to surviving and although I’ve been avoiding gluten like the plague, the fact that my symptoms had not improved in over four months meant things like cross contamination were seemingly impossible to avoid.

So I eagerly jumped into the article and hoped, prayed, fantasized that maybe a cure was on the horizon. I would gladly give up gluten free foods for life but it was really relief from painful and disfiguring symptoms (like blisters all over my face) that I would trade my left arm for.

And although the article did give hope to those suffering from Celiac, the excitement I should have felt was short lived. This “miracle” was accomplished by apparently creating a small wound and applying a band-aid to that area filled with worm larvae. That’s correct, the option (and mind you the ONLY option I’ve heard of) available to those of us braving this Celiac territory is to fill your body with worms.

Just let that sink in…

I’m still letting it sink in actually… this may take a while...

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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.

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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?

Lips Like Mine

The hardest part about this celiac and DH journey is that you never really know when you might be on the receiving end of a tiny trace of gluten. Did someone in the house have a sandwich and forget to wipe up? Did a waiter accidentally set your plate down for a second while grabbing a loaf of bread for another table, somehow dropping crumbs onto your meal?

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How can you ever stop all the chaos of gluten particles from entering your world?!?! The truth is, unless you want to live alone as a hermit (which I have considered!), you can't!

So, the best alternative is to find humor in the inevitable whenever possible. One such opportunity came when I woke up and discovered my lips had blistered again, this time swelling massively at the same time. I had literally turned into Daffy Duck! If EVER a reason, this was the best reason to call in sick! You can't really imagine what you might look like with a botched Botox job but now I will never have to!

And I got this, for FREE

This is Dermatitis Herpetiformes folks. You don't choose it (and never would), it chooses you...

Potato Kale Soup

For some reason, I love potato soup. I didn't care what I ended up with when I started cooking this soup as long as I had nice chunks of potato waiting for me at the bottom of my bowl. Fortunately, it turned out to be good so I'm sharing it!

Ingredients: 

5 cups of water 

1 small can unsweetened coconut milk

2-3 small russet potatoes, cubed

1 large onion sliced thick

3 cups carrots sliced thin

2 cups kale

1-2 teaspoons salt

1/2 teaspoon pepper

1-2 teaspoons garlic powder

1-2 teaspoons onion powder

1-2 teaspoons paprika  

2 hard boiled eggs if desired

Put potatoes on high heat in water with 1 tsp salt and bring to a boil for ten minutes. 

Bring heat to low and add onion, carrots and spices. Most spices should be to your taste so start at the low end and add more as needed to finish. 

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Add coconut milk when mixture is no longer boiling. Stir for five minutes, cover and simmer low for 40 minutes. 

Add kale and cover to simmer low for twenty minutes. Add more spices as needed. 

I like to add some sliced hard boiled eggs when serving for protein and scallions to finish. Serve hot and enjoy!