My GF Story (Part 2)

When last we met our heroine, she had just received a diagnosis of dermatitis herpetiformis and celiac disease:

I was so elated to finally have an answer. There was a problem and I could now FIX it. I wasn't a freak or a monster. I just got the short straw in the genetic lottery and would have to stop eating a few things - no big whoop. Easy peasy. I could cook, I knew about food - this was gonna be a snap.

HAH!

Now we have Udi's and Rudi's, GF blogs and Meetups, GF bakeries and menus. Back then - yes, even just a few years ago - there weren't so many gluten-free options, especially in the upstate NY town I lived in at the time. The bread was tasteless cardboard, the pasta hit or miss, and GF restaurant menus few and far between. (And all of it was insanely expensive.)

I did not eat out anywhere for three years post-diagnosis. No brunches, no celebratory meals, no after work happy hours - ZERO social eating. I tried to go out, but I always, always got sick. The blistering rash flared as I ate, and raged for days after. Here's the kicker: even when I DIDN'T eat out - when I dined solely on the GF specialty items and whole foods I was cooking: the meat, veg, and safe starches - the rash never went away. It was less severe once I cut out gluten, but it was still covering large swaths of my body and incessantly itchy. I kept waiting for the magic, for the diet to do its thing and heal me... and every morning I woke to new blisters and bloody bedding.

I felt like I was losing my mind - again. I fretted over every morsel that went into my mouth. I called product hotlines to question the GF status of products. (Bless the good folks at Wegmans. They answered my every query thoroughly and with good cheer.) No matter what I ate (or didn't), my symptoms did not improve. I continued to wear long sleeves and long skirts, even in summer. I avoided social events that involved food (read: everything) and - not surprisingly - became even more depressed.

My doctors were surprised and assumed I must be getting glutened somehow, despite the dining precautions I took. The blood tests they ran showed that I was not, in fact, consuming gluten. After three years of this craziness, I caved and started taking dapsone, a steroid that all the blogs and listservs led me to believe would render me an anemic, frail mess. I had resisted taking it, believing the bad press and refusing to believe that the diet wouldn't "fix" me on its own.

I regret waiting so long to try the Rx. One day on dapsone and I felt some relief. By day two, I SAW a difference - and by day three I ceased to have new eruptions and the old blisters were healing. It was miraculous. And I mean that - it felt like a miracle after YEARS of constant physical discomfort.

To be fair: I did have some wonky blood work in the first year after taking dapsone. I was chronically anemic (dapsone kills red blood cells), but things leveled off after that first year. In the years since, my blood work (CBC, T4, etc.) has always been stellar (knock on wood).

What I found out along the way is that (a) some people - a very small percentage - do not respond to the gluten-free diet and (2) those with dermatitis herpetiformis are, as Dr. Peter Greene said in his celiac book, "exquisitely sensitive" to even minute amounts of gluten. (Yes, that's why I'm the GFbird - the canary in the gluten-free coal mine, sensing even trace amounts of gluten.)

Words, words, words. (Yes, I still have a few more.) Revisiting this part of my life has been cathartic, but a bit stressful. I'll share more about my post-diagnosis life in the months to come.