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.

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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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.