One of my favorite delusions is that I’m perfectly healthy. I harbor a dream that my Celiac Disease has spontaneously cured itself, and one day I will be able to share crostini with Michael in Florence, or go out to eat without worrying about some mysterious gluten source sneaking into my food. I speculate about the possibility that my thyroid has regenerated, and I’m free from the pills I’ve been taking for a decade…so far.

The reality is, the possibility of these things happening is infinitesimally small. Yes, I hold hope that a high-veg diet coupled with regular exercise and stress reduction might cure me, or that, perhaps, someday far in the future when I get pregnant, one of the unpredictable outcomes will be an end to my autoimmune diseases (ADs). But this post isn’t about those dreams. This post is about the reality of my life with ADs–which tend to come in clusters for us lucky people–and an attempt to lay the groundwork for future posts on the same topic.

Autoimmune diseases, in oversimplified terms, are the result of the body getting confused and attacking itself as if it were a pathogen. There are a host of possible causes for onset, ranging from physical trauma to genetic predisposition. In my case, we think it’s a combination of the two. Hashimoto’s runs in my family, and Scandinavians have a higher propensity for Celiac Disease; when I got a kick-my-butt case of mono at age 15, it really sent my body reeling. This was quite the one-two punch, because even after I recovered from mono itself, my body just wasn’t working quite right. I’m convinced that assault on my immune system is what flipped the switch to the “on” position for my ADs.

When I was 17 and feeling lousy still/again, my mother took me to her endocrinologist. Mom had just been diagnosed with Hashimoto’s Hypothyroiditis (an AD that attacks the thyroid gland), and we shared many of the same symptoms. Within a few weeks, I had a matching diagnosis and a bottle of Synthroid. I didn’t have all of the tests to confirm that it’s Hashimoto’s (as opposed to the less pernicious, but still troublesome, Hypothyroidism, which is not an AD), but blood tests coupled with an ultrasound were sufficient for my doctor.

Fast-forward a few years, and I had the experience of a lifetime: a semester’s study in Rome. As I scarfed down pasta and panini from one end of the city to the other, I found myself in increasing pain. I eventually found an English-speaking chiropractor whom I saw for weekly adjustments. They would alleviate the pain for a day or two, but soon I would be in agony again. We had no idea what the problem was, and fears ran from Fibromyalgia to a compressed disc in my spine to a tumor that was causing a bizarre reaction. By the time I left Italy in December, 2004, my dad had to “borrow” a wheelchair for me at the airport because I was in too much pain to walk to the gate.

My favorite place: the Pantheon in Rome

Finally, in July of 2005, I had an appointment that would change my life. My dear friend Daphne took me on a road trip to Maine so I could visit the Women to Women Clinic, originally founded by Christiane Northrup. Within twenty minutes of meeting Marcelle Pick, dream Nurse Practitioner, I had an answer. Nearly a dozen doctors before her couldn’t figure out what was wrong, telling me it was “just stress” or, worse, insinuating that it was all in my head. So when Marcelle said that she was quite sure my problem was gluten (which I had never heard of), rather than being depressed that this meant a lifetime without pizza and beer, I was elated that I finally had answer. (The crushing frustration came later, believe me.)

Practically speaking, ADs are part of my life, but managing them has become second nature. I don’t even think about Hashimoto’s anymore–especially now that my medicine is finally working properly; I just take my pill every morning and pop over for a blood test every six months to make sure all my levels are normal. Celiac Disease is certainly a bigger production, but after five years of managing it, I have my routines…though I do still encounter the occasional snafu.

Any questions?

Would I like it if these ADs disappeared? You bet. But since they’re a part of my life, I choose to glean the lessons I can. I also find it an honor to share my story with others, both people who are unfamiliar with ADs, and those who are learning to live with them. So if you have any questions, go ahead and ask. And if you have stories of your own to share, please go ahead and do so in the comments.

Please note: I am not a medical professional. In fact, I’m pretty lousy at science. All information in this and subsequent posts are purely my own understanding and interpretation based on personal experience and research over the last decade. If you suspect you have an autoimmune disease, please consult a trained health practitioner immediately.

A friend is heading back to the States tomorrow, and brought in a slew of goodies from his kitchen. Including Riesens. You know Riesens–those yummy, chewy, chocolatey coffee-licious candies. They got the better of the fierce sugar cravings I’ve been having, so I had one. Then two…three…six. I’d skimmed the ingredients and eaten them before, maybe one or two. Saw “modified food starch” on there, and told myself it’s safe, it’s almost definitely corn. This has been a very convenient li(n)e I’ve told myself over the last few years. I may have been OK had I scoured the ingredients more closely, like I did this evening after I started to get those tell-tale pains in my joints: “Contains milk, wheat, and soy ingredients.” Dammit!

The good news is, I think the amount I consumed was small enough to make me extremely uncomfortable, but not writhing in pain, unable to stand, searching out that one half narcotic pain killer I keep as an absolute emergency. I am taking a cue from the inspiring Maria at Going Down Swinging: A RSD Blog, and refusing to give in to the pain. On my walk home from work, I practiced some deep breathing and visualization techniques (until it occurred to me that closing my eyes for visualizations wasn’t the smartest thing while walking home), and focused my attention on what I wanted to manifest. In other words, I kept telling myself how healthy I am, how smoothly my joints work, and how good I’m going to feel in the morning. To be honest, yeah, I’m still in pain, but I know it’s not going to last. And I just got even more motivation to stop eating packaged foods, and, when I do, to read the stinkin’ labels!

Finally, I recently came across this stellar CSL post by Stefanie Bryn Sacks entitled All About Wheat and Gluten! If you’re curious about the distinction between wheat allergies and gluten allergies, and which companies make the best eats, this blog is a must read.

Fully embracing my new omnivorous lifestyle, I became quite the connoisseur of meats. Rabbit wrapped in pancetta. Bacon-wrapped-pork loin. Even bacon ice cream. My second date with the love of my life was a bacon safari, and I’ve been known to talk bar owners into giving me some raw bacon if the stores were closed so I could fry it up in the morning.

So why on earth did I, the woman who has declared pigs her favorite animal because they’re “wonderful in all forms,” title this blog post a slow transition to (mostly) vegan?

The short answer is that I could no longer ignore everything I’d learned. Let me first make clear that I do believe eating is a largely personal choice, and I have no intentions of telling my friends and family how they should eat. I simply want to explain why I’m weaning myself off animal products, and where I got that information. To give you a quick list:

• The China Study, by Colin T. Campbell, which outlines how what we eat impacts our health on every level.
• This article in the New York Times Magazine, from Jonathan Safran Foer’s book, Eating Animals
• Michael Pollan’s Food Rules
• Food, Inc.
• This critical information about the environment via Kathy Freston, author of Quantum Wellness: “World Bank agricultural scientists Robert Goodland, who spent 23 years as the Bank’s lead environmental advisor, and Jeff Anhang, a research officer and environmental specialist for the Bank, argue convincingly that more than half of all greenhouse gas emissions are attributable to our desire to eat chicken, pigs, and other farmed animals. That’s right: Add up all the causes of climate change, and you find that eating meat causes more than everything else combined.”

Many of these deserve blog entries of their own, but if you’re curious (or if you think your friend/sister/daughter/cousin (me) has gone crazy), go ahead and check out these resources.  For me, though, The China Study was definitely the most compelling, and made the single biggest difference.

It’s not that I’m determined to live to be 110; I just want my years here to be as vibrant and enjoyable as possible, and that means I have to be healthy. I’m only twenty-five, and I’ve already spent much too much time in doctors’ offices and feeling lousy. I want to do everything I can to spend the rest of my life living instead of shuttling from one office to another figuring out what’s wrong with me. I truly believe that a diet rich in whole foods and with little to no animal product is my best chance. (Well, that—and yoga.) The China Study is what finally got me to admit this to myself. As an added bonus, here’s a video of Kathy Freston interviewing T. Colin Campbell on extra.

My early 20s were pretty tough in many ways. I was struggling to understand what my health obstacles were, and how to live with them. I was in an incredibly destructive relationship. I had no sense of where I really wanted to go or what I wanted to do with my life. And because of all this emotional muck, I turned my attention largely to food (the extra sugary, extra fatty, extra animal-based variety), alcohol (I love my friends from my bar back in Philly, but maybe that’s not the best place for a default hangout), and buying stuff (I have the credit card statements to prove it). This isn’t to say I had no healthy habits, but I certainly looked outward for satisfaction.

Here’s the great news: my mid-20s, so far, are awesome. I understand Celiac Disease, how it affects my body, and how to handle it–and it’s really pretty darn easy, for the most part. I am in a loving, inspiring, healthy relationship with the man of my dreams, and we both happily put in the effort required to keep it running to smoothly. I have returned to the very things I loved when I was ten: words. travel. the environment. Satisfaction now bubbles up from inside (even though I do have my frustrations, certainly).

This return to my true self has been so exciting, and rather amusing. I’m lucky–it only took me fifteen years to get back here. What I keep noticing (despite all the “window-shopping” I do online) is how much less stuff I desire. I know that I am not my belongings, a point that was made abundantly clear when I had to fit everything for fifteen months into two suitcases. I took tons of stuff to Good Will, threw out things that no longer served a purpose and weren’t in good enough quality to pass along, sold some things on CraigsList, and gave things away. The rest went into storage.

What makes me laugh is thinking about what is in storage now. Some of it is definitely worth saving–all my kitchen goodies that I inherited from Mormor; my king size comforter (surprise secret to a happy relationship: get a comforter too big for your bed. It really helps with that whole cover-hogging problem); art I’ve collected; my books. Though I did a great job winnowing my belongings, there are other things that I feel I could easily get rid of now, but still felt too attached to then.

All in all, it’s been incredibly freeing. When Michael and I do finally settle down Stateside, I am confident our home will have much less stuff, and instead a carefully selected collection of things that really mean something to us. (Mostly) Losing the desire to acquire has left me with so much time, money, and energy to spend on things that really matter to me. It’s much easier to pay off credit card debt and buy the tools that make a healthy life easier–like a used VitaMix and oodles of supplements–when I’m not stocking up on, well, to be honest, I don’t really even know what I used to spend all that money on.

To be clear, I by no means live an ascetic lifestyle. I just try to be more conscious about how I spend the resources I have available, not only in terms of how my choices affect my life, but also in terms of the environmental impact. I have a lot to learn and a long way to go, but I feel like I’m taking definitive steps towards the life I want to lead.

After over four years of living with a Celiac diagnosis, in many ways, I’m grateful. It got me thinking about my health in a more active way, and eliminating gluten was the first time I really felt results when I made a change in my lifestyle. Plus it’s so nice to not even have the option of a donut or McDonald’s fries; will power doesn’t even come into play.

But what I would love is the option of going out to eat without fear. Or showing up at a party/wedding/event, knowing that I could eat safely, even if the crackers were placed right next to the cheese and fruit. Or not feeling like a pest when someone makes a beautiful meal and I have to grill them about the ingredients. For those reasons, I hope there is someday a successful treatment for this disease.

That said, the article is absolutely right with this introduction:

In a sense, the 2 million plus Americans with celiac disease are lucky. No other autoimmune disease has such a safe and effective treatment.

Celiac Disease is a nuisance, but (once diagnosed and managed), it doesn’t really affect quality of life like so many other autoimmune diseases.  Even if it’s never “cured,” I’ll count myself lucky.