Forgive the delayed post. Have been getting a little deep over here at GFbird, pondering my gluten-free past in the midst of a busy gluten-free present. We GF folks all have a diagnosis story; figured it was about time I shared mine:
I have always had stomach troubles. Even in grade school, I often walked around with Tums or some other antacid in my pocket. There were periods in high school when I had searing abdominal pain, undiagnosed and chalked up (by my mother) to stress and taking too much ibuprofen for my near-constant headaches and occasional migraines. I was given sleeves of saltines to eat and the Advil was hidden. Nothing improved. I had bouts of anxiety and frequent asthma attacks. I was moody, anxious, and deeply unhappy. (Early celiac symptoms or teenage angst? Hard to tell.) College was more of the same, mysterious GI ailments, always feeling vaguely unwell.. I was diagnosed with GERD in 1999 and put on proton pump inhibitors. The headaches, migraines, and other symptoms continued as I chugged along into my 20's.
In late 2001 I traveled to Europe for the first time. Tickets were insanely cheap, as no one wanted to fly after 9/11. The very first day of my trip - within hours of arrival - a large red patch appeared on my right ankle. I was lacing up my hiking boots, about to head out and explore, when I saw it. A raised, angry welt. Soon after, smaller red patches started appearing elsewhere on my body. By summer, they had become clusters of blisters, concentrated on areas where skin was closest to the bone: elbows, knees, scalp, knuckles, eyebrows - but no area of my body was safe, save for the soles of my feet and palms of my hands.
The itching was incessant and nothing provided relief. I could not stop scratching. Itching is worse than pain, so I'd scratch until it hurt, until I bled. I had scabs and open wounds everywhere. Friends would often have to point out when I was bleeding, as I was just oblivious by that point. Every set of bedding in the house was covered in my blood, as I unknowingly scratched away all night. Little children literally stopped and pointed. I felt like a monster. I took to wearing long sleeved shirts and ankle length skirts, even in summer.
No one had any idea what the heck was wrong with me. I was falsely diagnosed with psoriasis, skin yeast, scabies, impetigo - given all manner of toxic creams to apply, and prescriptions to ingest. I was told to soak in oatmeal baths, apply Aveeno, to try Udo's oil (hah! it contains wheat), and more. I went to two dermatologists, doctors, nurse practitioners, acupuncturists, tried Chinese medicine, chiropractors, and a kinesiologist. No one had a clue.
I was in a relationship while all of this was going on, one that wasn't terribly healthy to begin with and that deteriorated as my symptoms worsened. My partner was annoyed by my issues and not terribly supportive. Still, we slogged along, staying together for the next couple of years, even building a house along the way.
By 2003, I was having... er, very dark thoughts. I had never been one to think of ending my life; despite my troubles, I had always held out hope that life would improve, even from an early age. I didn't necessarily have a plan, but my stock answer was "I don't know how, but it's all going to work out." But I'd hit a wall. I was in physical agony, mental anguish, and no one could tell me what was wrong. I felt deformed and unloved. I frankly didn't see the point in continuing on.
Then, a glimmer of hope. A new dermatologist had come to town. A young doctor taking over for one of the old timers I'd seen. I booked an appointment. His eyes lit up when he saw my skin (the only person who ever had that reaction!). He asked if he could take a biopsy on the spot, warning me that it would be a big one. Permission granted, no questions asked. Within days, I was back and given a diagnosis of dermatitis herpetiformis, told to stop eating gluten right this minute - and ordered to get an endoscopy to confirm a likely celiac diagnosis.
I was joyful on the way home. Hooray, I had a diagnosis! There was something wrong, but at least I finally knew what it was - and could fix it!
Thus ends part one of ye olde diagnosis story. Part two later this week.