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...

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. 

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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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...

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! 

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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Extreme Makeover, Part 2!

The hardest part about throwing away everything in your bathroom is the realization that you bought a lot of products along the way that have never seen the light of day. It quickly became obvious that I had made at least a couple dozen product purchases that were completely wasted. As excited as I must have been on their respective purchased dates, they sat in the dark under my sink, completely undisturbed from that day on. I blame T. J. Maxx! 

Regardless, my mom and I began the arduous process of sorting through each and every one toiletry, be it an old favorite or still sealed. 

There were three categories.

1. Clearly identifiable as gluten free on the packaging or through a quick Google search.

2. Clearly NOT gluten free, and

3. Possibly Gluten free AND a favorite product. Meaning at the end of my detox trial, adding them in one at a time might be worth it. There were very few products left in category three...

By the end of the process I had a large pile of products to give away, a fair amount to trash and a few I packaged up to check in on in a month or two. Bonus, I had a VERY clean bathroom.  

In the midst of this Celiac journey, I've realized a couple of things. Priorities really come into focus when they involve your health. Something so easily taken for granted until it's no longer there. I had tried to clean my bathroom out from this mountain of products for years. I knew I wasn't using them all! But at the time they each seemed so important. And I hoarded them accordingly. This time however, I threw that crap away like it was diseased itself. And the next morning when I pulled out my new products, just a few, I used every one. In fact, I enjoyed using every one! There was a genuine satisfaction in the simplicity.  

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The following day an email from Ulta arrived. I was now a "Platinum" member  (I guess that's what a $700 purchase gets you!). But instead of running out to use my new $33 in points, I hit delete on the email. I had everything I needed for now. And I was happy with that. 

 

 

 

Extreme Makeover, part 1!

Have you ever stopped by your local make-up store and picked up a couple fun new items to try? I have! Except instead of a FEW items, I decided to restock every beauty and toiletry product I had.

Why the insanity? Because after weeks of dealing with the constant pain of DH on my face, the embarrassment of looking like my skin was constantly falling off and the final humiliation of my CEO asking if I had "kissed a blowfish", I was willing to try anything.

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Medically, the solution is not to change makeup and shampoos. "Gluten is not absorbed through skin", you'll hear from well intentioned doctors. But practically, shampoo and makeup can accidentally find its way into your mouth when washing your face or hair for example. And after numerous accounts from online blogs and Facebook pages with people saying it helped, why not? I was preparing for a detox diet and  detoxing my products seemed like a logical part of the deal!

So one late Saturday afternoon, my boyfriend and I strolled into Ulta. He carried around a shoulder shopping bag while I started perusing products. Soon we had an army of employees helping us, everyone pulling out their phones to google innocuous ingredients in between squinting at the tiny ingredients list on each product label.

$700 (yes, that's $700 U. S. dollars and no, Ulta does not take promises, Monopoly money or tears as forms of payment)... and three hours later, I was poor AND ready to go home and purge my old product demons.... But that's another story.... 

Two steps back... maybe

Like my ability to swear off sweets, my iron infusions were short lived. I had been told a couple would be required to get my iron levels to normal. Unfortunately, after the reactions I experienced, albeit not as bad as they could have been, the doctor said she didn't feel comfortable giving me another dose. Walking through T.J. Maxx, holding my cell phone in one hand and a cute spring dress in another, I leaned in to push the red cart with my elbow and make sure I was hearing properly. "But I don't understand. Isn't it more important that I get the iron? I can go through the side effects again". My pleas were not successful as the nurse on the other end explained, "I'm sorry but if you react at all the first time, the reaction next time would be much more severe. We just can't risk it."

My shoulders dropped and suddenly the dress didn't seem near as cute as it had just minutes earlier. "So what happens next?" There were a few seconds of silence followed by a quiet response, "We'll figure it out next time you come in."

"Figuring it out", didn't seem to be anyone's speciality in my Celiac journey. But I soon realized hope was not completely lost... yet. Out to dinner a few days later, I went to fill up my cup with water. Pushing the plastic cup into the water spout, I paused. I had filled up my cup without ice. I lowered the cup to the grate and stepped back, awestruck. In the last year or more my standard routine had been to fill any cup I have to the brim with ice and douse it with whatever liquid could trickle down around the squares of frozen water.

 

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Pica, as it's known, can cause extreme cravings for chewing ice (among other strange items) and is common among people who are anemic. Which I am! Or was perhaps? It may have been a fluke but in the midst of more frustrating unknowns, I smiled. Anyone at the little hole-in-the-wall Greek restaurant that night probably questioned the sanity of the woman who stopped to contemplate her life in front of the soda machine. But that's ok with me, I had found a reason to hope that the one iron transfusion I received would make a difference.

It will be weeks before I know for sure, but in the meantime my teeth may, I'm praying, seemingly be in for a break!

Iron Woman!

A team of doctors has been trying to determine the source of my low iron for years. Iron supplements were too hard on my stomach and until being diagnosed with Celiac, it was always a bigger concern to determine the "why" rather than replenish the "what". 

It was after my level dropped to a five (the hematologist said 50 is what they want to see....hmmm just a tad off), that I was told I needed to begin "iron infusions".

 INTERESTING!!!!

I immediately went to Google! Although there were a ton of medical commentaries, they varied so much I soon was more concerned and less informed than I had hoped. I decided to give up reading others experience and just wait for my own. 

The morning of, I checked into the outpatient cancer ward (which apparently is where they give infusions) around 2pm and took a seat in the lobby, waiting for the call to go back. I'd been told there was a relatively new product that would be infused in around 15 to 20 minutes instead of the alternative, which was a four hour drip! Within twenty minutes or so, a friendly nurse called my name and I followed her (since running away would now be quite obvious). She helped me get settled in a comfy recliner and brought me a thin blanket while I signed forms acknowledging the pages and pages of risks. A half dozen humans were lounging in chairs around me, hooked up to i.v.'s and in varying states of health. The woman closest to me had thinning hair and alternated between hiding under her blanket and sleeping with headphones. It made me realize something very important.

What I was about to endure was going to be ok. It had been easy to focus on all the pain, the hunger, the general frustration of Celiac and fear of this new procedure until I entered that room full of cases seemingly much more life threatening than mine. Don't get me wrong, Celiac can be dangerous if you don't adjust your life, my doctor had been very clear about that. But cancer is a whole different animal and my reality paled in comparison.

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The infusion itself consisted of an i.v. - first a saline drip, then a bag of steroids to assist with reactions, then the iron, more flushing with saline and finally an observation period. Start to finish, around three hours. And I did have some reactions for about 48-72 hours including headaches, stomach pain and severe flushing accompanied by hot flashes. It wasn't a picnic. But at the end of that period, things slowly subsided. I still had skin problems and headaches and stomach frustrations. I still have Celiac after all. But just like when I looked around that room and saw the group of patients next to me, I found a way to be grateful.

 

And Now We Wait...

After the spots started duplicating in rapid succession, my gastroenterologist decided I should visit a dermatologist to confirm exactly what was going on. He suspected DH (celiac's dermatitis herpetiformis) but a biopsy would confirm. Fortunately, after only a little pleading they scheduled me the same day. 

I was really over sitting in doctors offices and by the time they called me back, I felt bad for "Ruth", my sweet usher through the office maze. I tried to smile and be happy to rattle off my "medical history" but it was obvious spending time with her wasn't top on my priority list. I was even less thrilled twenty minutes later when the doctor finally came in. 

She thought this was just a follicle rash, brought on by shaving or something but "A-Ha!" I hadn't shaved in days! Now, before you judge, I have fine blonde hair and after a week, I still can't visually identify whether or not I have grown anything successfully. Shaving is more of a cultural habit than necessity. I have to pencil in my eyebrows in for heavens sake!

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She could tell I was hoping for an answer rather than a guess and offered to do a biopsy as what seemed to be a peace offering, most likely out of pity. Unfortunately for her, I don't mind pity! I would take it!

It will be two weeks before I hear back and in the meantime, I wait. Not patiently mind you. And not happy to have only a wash and cream to soothe my itching and achy legs, but nevertheless, I went for twenty plus years without being diagnosed with Celiac so two more weeks won't kill me. I hope.