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. 

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!