Just another M.D., who knows nothing more than he’s been told to know

The old elevator dings my arrival to the second floor of the medical facility in Anderson, SC. I take a deep breath in a futile attempt to stop the pessimistic thoughts repeating over and over in my head, “Just another M.D. who knows nothing more than he’s been told to know. Eager to tell me that I don’t know my own body, or that all my issues are in my head or have nothing to do with each other.”

“Calm down Tara,” I tell myself, “You’re just here to get established with the practice. It’ll take 5 minutes; they will ask about your gut and family history, and it’ll be done. They are just people trying to get by in this world the best they know how.”

I walk the length of the hallway and am greeted by a sweet-faced young lady who calls me, “Darlin’”.

Living in South Carolina has been good for my faith in humanity for the most part. People are truly kind. I am weighed and guided back to the room where I will meet with my new Gastroenterologist. I tell the nurse that I am just there to get established because my last Gastro was not my favorite human being. She laughed and said, “Oh, you’ll love Dr. B! He asks all the right questions.”

I smile and thank her. Most nurses like their doctors but that doesn’t mean the patient will.

Within a few minutes a doctor with a huge grin enters the room, “Mrs. Jackson? I’m so sorry to make you wait. I’m Dr. B.”

I immediately begin my evaluation of him. He young. Like, really young. Maybe JUST out of his residency. He’s short; but everyone is short next to my 6ft tall frame. He wears a HUGE genuine smile, and based on the varied opacity of his teeth, I see he likely makes some dietary choices that are common in young southern men. But I can feel that he’s good. Like, it’s hard to explain, but his energy is clean and good.

He sits down and says that he’s glanced over my medical history but wants to go over it face to face. I begin to tell him my history of having Celiacs Disease and the process of being diagnosed. I mention that shortly after my diagnosis I was able to connect my panic attacks to being “glutened” and how 10 years ago, the gut brain connection was not recognized so my doctor at the time laughed at me for the “self-diagnosis” and told me to go see a nutritionist because there was nothing more he could do for me. Celiacs has no treatment, no drugs to prescribe, and doesn’t make any money for the doctor.

He took a breath and stopped me, “So, what did these panic attacks feel like?”

I gave him a puzzled look; he’s asking me about my panic attacks? “Well…” I described to him the best I could what my experience had been years ago before removing gluten completely from my diet.

“So…” he says.

Here comes the disconnect. The dismissal. I keep myself from rolling my eyes out loud.

 
He continues, “When you were having these panic attacks – did you get this rash that you have now? The one on your chest and neck that was not there when I entered the room, but have been watching develop and climb up your neck for the last 5 minutes?”

“Ummm… Yes.”

I was suddenly so confused. I have spent years explaining away the red-hot welt like “flush” that shows up when I am nervous or excited or angry or passionate … or have had wine or any sort of alcohol. Or when I am stressed or eat something my body doesn’t like, even though it liked it just fine the previous week and didn’t react. I told him it mostly shows up with any strong emotion, but sometimes, I can’t explain why it’s there. I just figure that was me and I was cursed to wear turtlenecks to job interviews for the rest of my life so that people don’t get distracted by it.

He types something in his computer and for all my medical knowledge and ability to read people, I can’t make the connection between this flush and my celiacs that he’s obviously made. “How are you connecting these two things in your head?” I ask.

He sits back, “Well, there is a rare syndrome I’d like to run a test for. It’s called Mast…”

I interrupt “Mast Cell Activation?!”

He looks surprised. “Yes. Mast Cell Syndrome. You’ve heard of it? I’d like to order a test for you.”

My jaw hits the floor.

Who is this guy? He has an M.D. behind his name, specializes in the gut, but is calling out a hive like rash he can plainly see crawling up my chest and neck and throwing around terms like Mast Cell Activation Syndrome?!

I smile. It’s probably a stupidly silly smile because I am almost giddy and at the same time, confused to be sitting in front of a doctor that might just understand more than I have given him credit for. “I’m intrigued. I know about MCAS, because I had an employee who was diagnosed with it, but I have never looked at it for myself.” I pause as I dig deep into my brain to retrieve the MCAS info I learned years ago, “But you’re right, it might just fit.”