Two years ago this fall, in the middle of some really, really difficult days, I requested a full physical from my doctor. The result of that physical has been two years of figuring out why I have ongoing acute anemia–despite giving up my vegetarian diet and 5 iron infusions over the course of 18 months.
Those two years have included many days where I felt like utter crap physically. I gave up running. I never felt rested. I paid close attention to what foods/activity made me feel good and what didn’t. I spent many hours and many dollars in the offices of specialists.
Spoiler alert: I’m fine. Totally fine.
Well, except for this one little thing: I am currently being treated for (read: living my life as if) I have celiac disease (not the same thing as a gluten allergy–an autoimmune disease that attacks your small intestine, that is triggered by gluten).
One very persistent (and honestly kinda cocky with terrible bedside manner) GI specialist put two and two together on lots of things and finally said to me, “Julie, I suspect you have celiac disease. All our tests and biopsies say so. And I need you to go on a strict gluten-free diet immediately and then in a few months we’ll check your blood work again and I think it will be fine.”
And just like that, I did it. Cold turkey.
Ok, here’s the deal. I am not writing about this for sympathy–and I have a hard and fast rule about personal boundaries and oversharing via social media. But I’ve learned some things in the last few weeks that have mattered a great deal to me, and I think, maybe, they are life lessons in general. So…FWIW:
It is so, so nice to be loved well enough to be known. The first people I told about this celiac thing said to me, “What about bourbon and ice cream?” And, thankyousweetbabyjesus, these two vices of mine are totally fine (barring ice cream with things like pretzels or cookie dough–but those are easily worked around).
I have a much deeper appreciation than I already did for those who have “silent diseases” that require huge life changes and sometimes awkward social conversation. Like my sweet friend Ellen, diagnosed with Type 1 diabetes while she was in high school–requiring an instant and massive life adjustment that she has handled with more grace and courage than you can imagine.
I’m annoyed–even more so–by those who are gluten-free because it is (so very oddly, says the Celiac Foundation website) somehow trendy to do that these days. This isn’t a choice for me. Like, at all. I’d never in a million years choose it. I have favorite restaurants I can’t go to easily anymore, favorite beer I cannot drink, and when someone says, “Hey, wanna do dinner this weekend?” I am immediately paralyzed with, “Um, where are we going? Can I eat there?”
Speaking of dinner out…this, for me, is the worst part. I love food. More specifically, I love good food. Being at table with people I love is one of my most favorite things. Some of my best memories are of eating and drinking with the ones I love best, sharing in rich conversation and laughing until our sides hurt. Obviously I can still do this–but it requires more thought and intention than it used to…and I despise feeling like a special case.
Solidarity matters. It means the world when your daughter and your favorite companion help you demolish 2 dozen homemade gluten-free chocolate chip cookies over the course of a week and say, “Just make those from now on…they’re good!” Because I love baking. And I especially love baking for those nearest and dearest to me. Also someone (who doesn’t have to) sharing a gluten-free pizza with you is pretty much gold standard caring and cannot be beat.
And I think, finally, what I am is grateful. Even when I find myself crying in the middle of Paul’s Market because I can’t get my beloved Paul’s BLT on their amazing sourdough bread for lunch anymore. Because what I know is this: it could be so much worse. I am the age my mother was when she had breast cancer, terrifying all of us. And last week, the 45 year old brother of a friend of mine dropped dead from a heart attack, leaving behind two sons and an adoring wife. And…fill in blank. These bodies of ours–they are amazing. But sometimes, they need special care. Sometimes, they fail us. Sometimes, we have to do their bidding in order to live a really full life.
So yea, my gluten’s been stolen. And it is not easy. And it is disorienting. And it requires that I shop, plan, eat, cook and budget differently. But, I’ve had some good help–my sister, some friends near and far, and the ever-loving, so-often-annoying, but-right-now-very-helpful internet have rescued me from utter gluten despair (yes, you can laugh at my drama there!).
And the help reminds me of the truest thing I know–it takes a damn village, people. All the time. Every day. No matter what. I know, I know–I say this all the time, but it is true–we do not traverse this life alone. At least not successfully. Every single one of us is indebted to another. And this is not something to ashamed of; in fact, it is grace. Working its beautiful mercy across our lives and reminding us that we were, at the very core of our beings, built to help each other. Made for relationship. Nothing else works. Not in our families, our social circles, our churches, our communities, our countries…at least, not for long.
This is what I want for all of us. What I find us falling so short of these days. What I say, somehow, in everything I write and every sermon I preach: we are better together. Stronger together. Made to be…together.
Now…if you’ll excuse me…I’m off to find some coffee. Because, also thankyousweetbabyjesus, that has not been stolen from me after all.
4 thoughts on “Someone stole my gluten….”
Jules. This was really good. Really good.
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I love your writing. You just get to the heart of the matter. Thank you for putting into words what I so often feel and/or think. Keep writing; I need to hear your insights.
A long time member of the Friday Morning Mens’ Group at Sandy Springs Christian Church has been dealing with celiac disease for several years now. He has learned of web groups who list recipes, restaurants, grocery items, et. which are available for him to eat. If his awareness will be of interest to you, I will be happy to put the two of you in contact with one another.
Please make all your writings into a great big book, same name would work too!😄
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