January is Thyroid Awareness Month, and this installment of my series on Graves’ disease is shared in support of the awareness campaign. The initiative is sponsored by The American Association of Clinical Endocrinologists.
Last spring, after months of medical tests related to my Graves’ disease diagnosis, we took a long-anticipated family trip to London and Paris.
Mind you, there had been months—specifically December 2012 and January 2013, where I didn’t think that I would be up for the trip. During the winter, I was perpetually exhausted and dealing with awful, 4-hour panic attacks brought on by the disease. (Yes, that was FOUR HOUR panic attacks.) But by mid-spring I got on that airplane and it was a grand thing to do, especially as just before departure I submitted the manuscript of my first book to my editor.
Another positive? I went abroad having been thoroughly vetted for gluten intolerance. Although my gastroenterologist explained that I was most likely in the “non-celiac gluten sensitive” category (a newish one), I didn’t feel limited by what I could eat while traveling. How bad could a little gluten be?
So eat gluten I did. It began with a croissant picked up near our favorite apartment in Paris. Several croissants actually. French bread, too. (By the way, handmade apricot-filled croissants taste best on a street corner for reasons that I cannot explain.)
I continued my gluten binge ways in London, the second city on our journey. There I indulged in pizza. (The PizzaExpress in Hampstead is a personal fave.) At our hotel we enjoyed an evening beer gratis for several nights. Life was good.
And then my neck broke out on the plane.
When I say my neck broke out, I mean it looked like some sort of red, scaly thing from that old television show, “V.” I loved that show as a kid, but I did not love what happened to my neck on that return transatlantic flight.
Over the next few days, the rash got worse and worse. Itchier and itchier. Ugh. Then it appeared on my arms and legs. Double ugh. It extended down into my torso and on my face.
A visit to a dermatologist led to a new diagnosis: dermatitis herpetiformis, or “celiac of the skin.”
The cure? A gluten-free diet for life. Just like “regular” celiac disease.
In a way, I wasn’t surprised by this news. My diagnostic journey with Graves’ disease began with a suspected sensitivity to wheat that led me to my doctor’s office, tests, and a few trips to specialists. When I got the dermatitis herpetiformis diagnosis from my new dermatologist, it felt like a second shoe had dropped. Finally.
Coming at almost exactly 6 months since my Graves’ disease diagnosis—and with a full 6 months of feeling like something other my thyroid was “wrong,” I had proof that my hunch was right. I’d been warned that it’s not uncommon for Graves’ patients to discover they have “other” autoimmune diseases. I was figuring that I’d turn up with rheumatoid arthritis, which runs in my family. By comparison with RA, dermatitis herpetiformis is pretty tame.
Basically, with regard to “DH,” I have confirmation that if I eat wheat then very bad things happen within me. If I steer clear of gluten, I’m fine.
It’s worth noting that, having grown up as the child of a man who worked at an industrial bakery that was sold to a beer manufacturer in the ’80s, gluten-based products were central to my early years. Gluten products paid for my prom dress, my first car, my braces, and my college years. In sixth grade I made a mint selling mini-bags of bread purchased at cost from the bakery at my school’s flea market. My dad’s car interior smelled like honey buns, which was awesome.
But me and gluten? We broke up for good in the wake of that 2013 trip abroad. I suspect it’s mostly the fault of the beer in London. (Note that no one should ever fault a Parisian croissant for anything. Beer gets blamed for a lot of stuff, so I’m okay with naming at it as my final gluten villain.)
In my reading over the last year I’ve learned that there’s some overlap between Graves’ disease, gluten sensitivity, celiac disease, and dermatitis herpetiformis. While I am no doctor, I can tell you that I keep meeting people—typically middle-aged women—who discover a connection between gluten and Graves and/or Hashimoto’s and benefit from eliminating it. I suspect the elimination of it has helped with my remission.
In my non-professional opinion, gluten sensitivity is worth discussing with your doctor if you’re in that healthcare cohort. (Many doctors, including this one, agree.) Don’t be shy just because the dietary change seems daunting. It’s easier than you’d imagine. Just go with a whole foods diet and skip out on the fat and sugar-loaded gluten-free stuff and you’re good.
Remember: if a girl raised on gluten and funded by gluten can give it up, anyone can. Healthy (and itch-free) living is worth the price of skipping beer on a London vacay.
P. S. The PizzaExpress chain in the U.K. now has gluten-free options. So I can, on my next trip, eat pizza, …