When I received the diagnoses of celiac disease and dermatitis herpetiformis, I already had a self-concept Jerry-rigged so the bent Person With Chronic Incurable Illness identity sprang from the conventional High Achiever boxed self taped to the scaffolding of People-Pleasing-Worryer and criss-crossed with labels like Short White Yankee Gone South. Here was yet another aspect of me that needed labeling, another imperative to redefine myself.
Anyone with celiac disease has a multitude of labels and identities to choose from. I could emphasize the food aspect and self-identify as GF or gluten free. I could focus on the autoimmune aspects of the disease and say I’m multiply autoimmune impaired in a nod to all the ways my body attacks itself: fibromyalgia, asthma, celiac disease, Raynaud’s, etc.. I simply could be a celiac but this one makes no sense to me. The disease is celiac disease. How can someone who has it be it? This one also irks me because it highlights how society likes to use a single label to define all the parts of you, as if having celiac disease explains everything about you, from heart to soul to bones to skin.
These days it seems I have so many labels or sub-identities, it’s as if I’m adorned with gaudy 70s-era bumper stickers from second-tier tourist spots. Not that bumper stickers are bad. I love souvenirs from my travels and I love to brag just a little about the places I’ve been, mostly because travel these days is a big pain in the gut and butt.
That said, I’m not sure I want to plaster a brag about my stay in Bird-In-Hand across my rear end. Nor would I gloat about hiking in Jenny Jump Park, so named, as the story goes, for a nine year old named Jenny who purportedly jumped to her death at her father’s instruction to escape people of color who may or may not have been plotting against her. I might, however, sport a sticker staking connective claim to driving and surviving nearby Shades of Death Road. It is in the Garden State, where I was born and grew up. I could pop that tag every time I accidentally get glutened.
I still remember that time when I was about nine and my dad screamed at some teenager for trying to put a bumper sticker on our car at Storybook Forest, another Jersey gem. No one was going to stick it to the family Dodge Dart if my dad had anything to say about it. He lectured the kid about the damage the adhesive inflicts on automotive paint. Right on! He also waxed loudly about how it infringed on our free speech rights to force visitors to wear a sticker proclaiming love for a run down place as the price of exiting the parking lot. That sticker still resonates with me. That’s where I feel I am sometimes when symptoms pile on: healthy is just a fairytale and the pain and malaise are as dense as a forest.
All of this is to say that living with chronic illness can feel like boarding a bus with season passes to a dozen amusement parks/tourist traps and then telling the bus driver to take you randomly to one after another park, at which strangers put you on ride after ride and slap you with super-gluey labels from each ride before forcing you to become a cog in a broken interactive exhibit, all while blindfolded and sipping a spirulina-grape juice smoothie laced with bourbon.
It’s sickeningly crazy.
When I got home after riding the diagnosis roller coaster and winning the celiac prize in 2009, I amended the little card in my wallet–what I call my Health Stats Sheet–and marveled at its new length. On this little card I’m distilled to a list of medications to which I am allergic, medications I currently take, and illnesses or conditions I have. A 3×5″ card that’s me. It’s tucked in my wallet for the off-chance that I need emergency medical care but am unable to provide my own health history. I could be unconscious after getting beaned in the head with a brick. I could be mute because the cat finally did get my tongue. Worst of all, I could have walked out of the building and that statistically more likely than a plane crash accident happened: I got hit by a bus.
The paramedics and ER healers would need to know what condition my condition was in before they could safely diagnose and treat me. They would have to know I can’t take aspirin or any other NSAID without suffering severe breathing problems and breaking out in hives. Same for sulfa drugs, although penicillin and its kin are safe.
Now they also would have to know not to put my medication on whole wheat biscuits and not to slather me with wheat germ oil or colloidal oatmeal if I had some kind of skin condition. Speaking of skin conditions, they’d need to know not to panic at the sight of a weird rash on my knees or forearms: it’s not contagious. It’s just the DH.
I highly recommend making a Health Stats Sheet for yourself and keeping it in your wallet. It helps when a new doctor wants to prescribe something new for you. Whip out the sheet and let her see if her proposed treatment might interact with or be contraindicated given the medications you already are taking. I sometimes get confused trying to remember all the dosages of all the medications I take. Having the sheet protects me from mistakes due to brain fog or simply misremembering.
My Health Stats Sheet also includes a list of ingredients in topical health and beauty products that contain gluten. This mostly helps me when I am thinking about buying something new. It also could help healthcare professionals who are charged with my care should I lapse into a coma. They might want to give me a spa treatment to jolt me back to consciousness and I’d want to them to make sure the shampoo or cleansing face mask didn’t contain gluten because it could get in my mouth and being unconscious I couldn’t swab it away. I’d never want them to feel guilty about accidentally poisoning me while I slept on and on.
There are the obvious ingredients to avoid: wheat germ oil or triticum vulgare, secale cereal, barley malt, avena sativa, sodium C8-16 isoalkylsuccinyl wheat protein sulfonate. In short, steer clear of anything with wheat, rye, barley or oats identified by their English or Latin names.
We then have the ones that I never would have suspected were gluten-laden. I have to keep them on a printed list because the names are too complicated and long to remember. My personal favorite, and I think I’ve previously talked about it, is phytosphingosine. Click on the word for an explanation of what it is and why it’s in skincare products. It’s usually cultivated using wheat. Keep an eye open for s-amino peptide complex, hydroxyproplytrimonium, stearyldimoniumhydroxypropyl, PEG-2 sulfosuccinate, and the list goes on.
We are responsible for taking care of ourselves. The more we know and the more we share with our healthcare providers, the safer we can be. Do you have a Health Stats Sheet in your wallet? How has it worked for you?