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.

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...

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! 

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!

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...

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....