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. 

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!

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.

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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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 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.... 

Firebirds ⭐️⭐️⭐️⭐️⭐️

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

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

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

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

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.