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...

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! 

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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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.