My Celiac Story.
Gluten and I don't get along.
December marks the anniversary of my celiac diagnosis. It’s been a bigger part of my life the past couple of years since I’ve started to experience some unpleasant complications, so I’ve been trying to be more open and honest about what the reality of living with celiac is like. I feel like if I didn’t know some of these things, surely there are other celiacs out there who don’t, either, and I’d love to help protect them from some of the hardships I’ve experienced recently. Anyway, in marking this anniversary, I figured why not tell my story again here, such as it is up till now.
My childhood friend Hannah was diagnosed with celiac disease when we were in sixth or seventh grade. I didn’t know much about it beyond that I knew it meant she couldn’t eat pasta. Yikes, I thought. What a terrible way to live.
I first started chewing ice when I was in eighth grade. For years I’d come home from school and go straight to the freezer, crack an ice tray and take the little bits that cracked off in pieces and MUNCH. I did this all through high school. I did it into college. I tried to give it up for lent multiple times. I felt like an addict. I had such a compulsion to chomp on frozen water that nothing could cure. It was bizarre. I heard rumors that ice chewing was linked to being anemic, but I seemed otherwise healthy, if not always a little underweight, so it wasn’t really ever looked into. Until I got to college.
I remember being in my sorority’s chapter meeting (yes, I was in a sorority, Alpha Delta Pi, if you must know), listening to the updates, sitting on the floor in a sea of collegiate girls, and I couldn’t keep my eyes open. Sure, I was double majoring and had an on-campus job and was probably in some production or another at the time, but this seemed like more than just casual tiredness. I felt like lead was flowing through my veins. I decided maybe it was time to give the campus health clinic a visit.
My blood levels revealed that I was, in fact, extremely anemic. My doctor prescribed some iron supplements and asked me to come back in a month or so and see if they helped. It’s worth noting that other symptoms I was experiencing around the time were general depression and an inability to get out of bed, and yes, a bad tum. I never really gave much thought to my bad tummy. I figured everybody dealt with this sort of thing.
I went back for my check-up to see how my iron levels were faring. Not too great, it turned out! Despite taking my supplements, my doctor saw no improvement in my anemia. It was then that she astutely said to me, “I think you may have celiac disease.”
I took the blood test. She was right.
Celiac is a disease of malabsorption. For those of us with celiac, which is an auto-immune disorder, when gluten gets into our body (not just through food, by the way!), our immune system kills the lining in our small intestines. If you don’t know, your small intestine is lined with millions of little guys called villi. They absorb the nutrients from the food you’ve eaten as it moves through you. If your villi are dead, well, you don’t get any nutrients from your food. This is why the symptoms of celiac can vary widely and why it can at times be difficult to diagnose. I am very lucky that I got paired with a doctor who knew exactly what to look for and pinpointed it right away. I know others struggle for years before they get a diagnosis. I also know that there are varying levels of the disease, and you can have like, low-level blood test results and high level ones. I don’t really know how that all works because my results were off the charts. In a bad way.
It is standard to have a biopsy to confirm celiac, so I had that, and yep. Sure do have it.
The good news is that following a strict gluten free diet allows your body to regrow its villi, which means you can start absorbing nutrients again, and hopefully whatever ails you will improve. The bad news is that that gluten free diet has to be strict. No cross contamination. Not so much as a whiff of gluten. The good news about being alive today is that there are a lot more gluten free options than there used to be! The bad news is that avoiding cross-contamination is a full time job. This wasn’t really expressed to me with the clarity that I wish it had been when I was receiving my diagnosis.
I remember my first question was “Can I still eat tortilla chips?” The answer is yes (generally). I remember being told I couldn’t order a hamburger and just take off the bun, that I had to have a hamburger that had never touched a bun. That was, so much as I remember, the extent of my celiac training.
I luckily was already planning on studying abroad in London the following semester, which I am very glad for because they are much better at labeling allergens in their foods in the UK than we are in the US even now, and certainly at the time. So it was a good little crash course on what I could usually expect to be okay with. No breads or pastas, obviously. But also no fried foods generally, nothing with soy sauce, no imitation crab. The list is pretty long.
So for years and years, I got by okay, or so I thought. It has taken me a long time to understand my body when it comes to gluten reactions. For years I was having tummy issues that I thought must be something else because I was obviously not knowingly exposing myself to any gluten. In the past year or so I’ve come to realize that I probably just wasn’t being as careful as I should.
I don’t like being the person at restaurants who asks a lot of questions, who is difficult, who sends stuff back if it comes out wrong. So for years I didn’t do that. I just ordered stuff that should probably be gluten free and hoped for the best. I trusted the menu if it had a little “GF” next to it. Now I know better. “Gluten free” and “celiac safe” are not the same thing.
A thing that’s worth knowing about me if you don’t already, is that my elbows hyperextend. A lot of my joints hyperextend. I used to think this was a cool party trick. Used to.
On the evening on April 22nd, 2022, I was dancing around my hardwood floor apartment in socks. I don’t used the term “dancing” loosely - I was in ballet for many years growing up. We aren’t talking, like, your casual boogie. I was doing pirouettes and battements and the like. I was feeling the music. All of a sudden, my feet flew out from under me, I instinctively threw out my left hand to brace my fall, and my elbow snapped completely in two under me as I came down. My humerus, actually, which is the bone in the upper part of your arm. Right above my elbow. Because my elbow bent the wrong way and I came down upon it with such force.
For it being my first broken bone ever, I sure did do it, you know?
My injury required three plates and twenty or so screws to connect my elbow back to the top half of my arm. I have a scar that is about ten inches long. When I got my cast off a week after surgery, the range of motion I had in my arm was about 30 - 45 degrees. In comparison, my healthy elbow’s range of motion is about -5 - 155 degrees. It took six months of physical therapy to relearn how to bend my arm, a motion I had completely taken for granted my entire life. I remember getting my blood drawn not long after my surgery and the medical professional who was taking my blood asking about my injury. “Oh,” he said. “That’s bad. They say recovery for something like that is six months, but it really will take a year or two.” At two and a half years out, I have found that to be true.
Re-learning one of your body’s most normal functions as an adult is a horrible process physically, yes (I worked on my physical therapy for about three hours a day for about six months, and I am very lucky that my health insurance at the time paid for that much PT or I very likely would not have the range of motion that I have now, which is about 95% what it was before), but it’s equally horrible, mentally, as I’m sure anyone who has experienced something similar would agree. It was my first time grieving my body in that way. It’s incredibly scary. I don’t wish to do it again.
When my surgeon looked at my first X-Ray, he said that if he didn’t know how old I was, based on the break he would have thought I was in my 70s. So, obviously, a bone density scan was in order, and sure enough, your girl’s got osteopenia, which is the bus stop in between healthy bones and osteoporosis. Apparently bone density is a common problem for celiacs. Nobody ever told me this. I learned the hard way. Hopefully you don’t have to!
So now I am much more diligent about the food I ingest. I ask questions when I go to restaurants. I google every single brand I buy at the grocery store, even if it’s yogurt, or peanuts, or frozen peas, if it doesn’t explicitly say “gluten free” on the label. And I’ve discovered that I could have been doing a lot better this whole time. Chips that I thought were fine at one restaurant are actually fried in the same fryer as something else that’s battered in flour. Brussels sprouts at another restaurant? Same deal. I made a whole cheesecake this past Thanksgiving only to remember to double check the pecans before I bit into it, and sure enough, those pecans (365 brand from Whole Foods) said on the label that they might contain wheat. I cried.
I spent years being willy-nilly about my food needs and just hoping for the best because I didn’t want to be a bother, or because I didn’t want to know the truth. Not anymore.
One of my great struggles as a celiac has been knowing how to own it. I never wanted to make it a big deal, because there are so many health issues that others deal with that (I thought) are so much worse. I suppose that since I’ve suffered a little more in ways beyond not being able to eat the stuff I want, I’ve felt a little more empowered to claim my disease. To share about it. To give it space in the world, in my life, in my identity.
My celiac story is ongoing. The last couple of years have been a new discovery in just how serious I have to treat it. I have allowed myself to grieve it more deeply. For so long, I tried to brush it off, because I didn’t want to seem like I was just using it to seek attention. I was afraid of being reprimanded for complaining about my own condition when there are others who have it worse. Now, I am learning to give myself space as I dream of what a life that doesn’t require you to think about and analyze every single thing you put in your mouth (or what shampoo you buy, or what your friends have cooked you for dinner, etc) would be like. I mourn the fact that that’s not my life. That I can very rarely feel completely safe about what I eat. That I feel like there are certain places in the world I can’t travel to, certain restaurants I will never experience because there just isn’t really anything for me there, or that figuring out what I can eat would be at best difficult and at worst disrespectful.
I hope that by trying that much harder I will save myself from more broken bones, or whatever other complications might arise (early onset arthritis! That’s a new one this year!). I hope that by sharing my struggles I can find community with others and help them in their own journeys. I hope that we’ll find a cure before my life is over and I’ll be able to eat a real croissant again.
So, yeah. I’m a celiac! It sucks, and I wouldn’t wish it on anyone. But I’m here, I’m learning how to cope with it, and I’m grateful that more and more gluten free restaurants are popping up all the time.
Thanks for reading! Thanks for taking the time to listen to my story. Sending you love and support for whatever health issues you’re dealing with, and if you don’t have any dietary restrictions - enjoy it for those of us who do!
Considering the subject matter of this post, I want to mention Domonique Brown, who died tragically recently because of a food allergy reaction at an event. Take a moment to sign this petition to encourage better legislation to protect those of us with food allergies in the future.
Thanks for reading! Wanna support me even more? Here are some ways.
Check out my group Shipwrecked Comedy. We’ve made a lot of shows, shorts, and series you might enjoy, and are currently putting out The Case of the Greater Gatsby, a film noir comedy audio narrative.
Listen to my podcast Anne of the Island - a radio-play style reading of the third book in LM Montgomery’s Anne of Green Gables series - and consider supporting it on Patreon.
I’m a big fan of Primal Kitchen - they make sauces, dressings, and oils from real ingredients and as far as I know, everything they make is gluten free. I especially love their buffalo sauce! My link MKWILES gets you a 10% discount.
If you don’t have a gluten free bakery near you, Wildgrain now offers gluten free boxes with a variety of items! Wildgrain delivers high quality baked goods right to your door, and their gluten free boxes are celiac safe. (They also have regular, non-gluten free boxes if you want that instead!) We looooved the bake-from-frozen chocolate chip cookies and the slow fermented country bread. You can get 10% off your first box with my code MKWILES.