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. 

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!) 

image.jpg

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...

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.

image.jpg

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.... 

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!

image.jpg

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.