Hi, my name is Jacqueline, and I have been battling Lyme Disease since I was 12. I am now 31, and still have to consider my body daily in ways many people don’t. And I’m okay with that.
I read up a lot about what’s going on in the gluten-free world, and as of late have been taking my place as someone who does not have Celiac disease in it more seriously.
See, I’ve been off of gluten since my first diagnosis of Lyme disease, when nothing was really working to make me better. In a rather progressive move (remember, this was the early nineties), my mother brought me to a “different kind of doctor”. In some ways I hated him – he took me off wheat, milk, eggs, beef, soy, sugar, corn, tomatoes, green peppers, citrus… I would sit in his office for hours while vitamins were injected intravenously. It was a really boring way to spend time as a kid.
But… within a few months… I could walk again.
Because that’s how badly Lyme hit me. For a while I could walk with crutches. Then I was wheelchair-bound. Then crutches again. I would go to school for a few hours a day, swim at the YMCA to get my joints moving, and spent most of my time in bed. I remember during one summer trip to see my sister at camp, my mom would hang my IV bag from a hook in the car to give me my doses of antibiotics. It was a mess, and as a kid it was hard to process.
Which is why I haven’t eaten gluten or milk since, and watch those other buggers in moderation. Oh, except for a bout in college my freshmen year, which kicked my ass into another flare my sophomore year which brought a whole new slew of lingering symptoms and set me on a 6-month cycle of driving the 90 minutes from class to weekly bicillin injects and picking up lots more vitamins again.
So, yeah, Lyme has stuck with me.
The purpose of this little history is because, out of the many things I do to keep a relative level of health, the gluten thing is the most popular right now. I’m not on board with 100% of the gluten-free world, as I see its misinformation and misrepresentation in the news as damaging – like when a really shady journalist writes a negative and uninformed piece that abuses research and flaunts insensitivity (see Why The Billion Dollar Gluten-Free Industry is Secretly Laughing at All of Us by Dana Baardsen). And when a really well-written piece by someone who’s had Celiac disease for a long time gets berated by readers who don’t read correctly (meaning don’t read a whole piece and therefore miss out on key information) and are subject to selfish, arrogant and hurtful responses (see this piece I totally support by Elissa Strauss at Jezebel and a piece on Easy Eats by yours truly). And then there are the awesome posts about inclusivity such as those at Celiac and the Beast and (I hear) coming up later today on Jules Gluten Free.
But here’s where I fit in – I don’t have Celiac disease, which is often given the greatest focus in regards to gluten. Not that I want or feel any need to take more focus from others with chronic illnesses that can’t digest it either, as what will happen to me if I ingest a little gluten is extremely different and far less dangerous than someone who does have it. But I have Lyme disease. Though it’s delightfully inactive right now, my third bout was even more debilitating than the first two and left me with much more to manage on a sustainable level. But when I keep focused on several things, I live with relative health and happiness. I am a very lucky, healthy, whole person.
But gluten is just one part of the picture.
This blog – aptly titled I Am A Whole Human Being – was originally meant to be a home for discussing the many things I do to keep a level of relative health, but as the gluten-free social circle widened, my focus on this site narrowed. And while I’m still going to be blogging about all the sweet gluten-and-dairy free friendly treats I’m baking up, it’s starting to take a little turn again. Last week I posted “Why are Women the Gluten-Free Gladiators?”, because I’m curious as to why this world has opened up careers for so many of us. Soon I’m going to start throwing more questions out there; weight loss and chronic illness, how we choose careers that help or hurt our illnesses, the “more is less” approach to eating (in regards to putting in better foods and reducing harmful ones), what to say or not say in certain situations as far as your health goes, the longevity of family relationships in regards to your illness etc.
I hope you’ll join in this conversation, and thanks for listening…
Happy Passover / Easter / Spring!
And thanks to my lil bro for being a jackass who gives really accurate editing notes as he reads my live posts while I type from a computer five feet away.