Me, the Lord, Pizza, and Celiac Disease

I trust you will forgive a more personal post than usual. For better or worse, the easiest way for me to communicate with a lot of people at the same time—including my church, my friends and family, and the many kind people who invite me to their city or country (and always ask what I like to eat)—is through this blog. I hope I can manage to talk about myself without being self-serving.

Two weeks ago I was diagnosed with Celiac disease, an inherited autoimmune disorder in which the body reacts abnormally to normal food substances. In short, the body gets gluten and starts attacking itself.

When a person who has celiac disease consumes gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body. Specifically, tiny fingerlike protrusions, called villi, on the lining of the small intestine are lost. Nutrients from food are absorbed into the bloodstream through these villi. Celiac disease can be associated to other autoimmune disorders and, undiagnosed and untreated, it can lead to osteoporosis, infertility, neurological conditions and in rare cases, cancer. (University of Chicago Medicine Fact Sheet)

A Year I Won’t Forget

As I’ve mentioned before, I’ve been to the doctor more times in the past year than in the rest of my life combined. I’m not exactly sure when I first noticed Celiac symptoms. I remember a time in seminary laying prostrate on the ground because I was so lightheaded and unnaturally fatigued that I wondered if I was going to pass out. About 7 or 8 years ago I went to the doctor after several bouts of what I labeled for my wife as “my faint feeling.” They did some blood work and hooked me up to a couple heart machines–everything looked fine. I went about life figuring I just had a bad couple of months. I would still get my faint feeling–which sometimes felt like extreme fatigue, sometimes like a general wobbliness, at other times like I was coming down with the flu–but the episodes were short lived (20-30 minutes) and intermittent (every few months).

Fast forward to last March. I was in Charlotte for an RTS event. The weather was gorgeous, so I set out on an easy 3-4 mile run. Half way through I felt like I could barely walk straight, let alone keep running. I chalked it up to an early morning flight and warmer weather than I was used to. Once I got back to Michigan I continued to feel a bit off. Then I had a major stomach bug for the better part of a week. Once all of that cleared, a general feeling of lightheaded-dizziness-fatigue set in and didn’t lift for two months. I stopped driving for weeks. I felt terrible almost every day. I wondered if losing 35 pounds in 18 months was about more than just exercise. I found almost no joy in preaching. Sundays became a profound struggle.

On most days I took multiple naps but still felt tired. I tried caffeine and protein. I tried to keep exercising. I tried sleeping in. Nothing seemed to work. It doesn’t sound that bad to describe it in retrospect, but I remember last spring as the worse months of my life (and yes, I know I have had a very good life). It constantly felt like I was going to fall over or fall asleep standing up. I curled up in my bed or on the couch in quiet desperation more times than I care to remember. I cried with my head under the covers on more than one occasion. I had the elders pray and anoint me with oil. I didn’t understand why I was feeling so bad and if I would ever feel better.

Meanwhile, I was going to the doctor every few days. My family doctor was sure it was stress, which was probably a contributing factor (it often is), but I always felt like there was some underlying illness that the anxiety about being ill was only making worse. I saw a cardiologist, an allergist, and an ENT doctor. I had blood work multiple times, a stress test, a Holter monitor, a full battery of inner ear exams, an EKG, a CT scan, an MRI, and no doubt some other tests I can’t remember. Everything was normal. I didn’t have a tumor or MS or a thyroid problem or cancer. Which, as anyone who has been through umpteen doctors will tell you, is great news and terribly frustrating. If I look so healthy, why do I feel so sick?

Once I got used to the symptoms, things got better. I learned not to panic when I felt bad. I learned that I wouldn’t be miserable every day. Some days were normal, even some weeks. Other days were blah. Some were debilitating. By fall I wasn’t feeling faint and fatigued as often, but I started to develop a nasty rash (I won’t go into details) on my knees and elbows. It cleared up after a few weeks, but then it would come back again. I started itching in new places. My allergist said it was seasonal allergies. Once the season passed and the horrible keep-you-up-at-night and want-to-rip-your-skin-off itching did not, I went back to my allergist. She listened patiently, but didn’t know what to say other than that I had “the itch.” Then on a whim, she said, “Why don’t I order some new blood work. I’m sure you don’t have Celiac, but let’s check just to make sure.” Good idea.

I didn’t expect any answers, but I was still eager to get the lab results. That’s a strange thing about doing the doctor circuit. You don’t want to have something, and you are desperate to have anything. The doctor called me on Christmas Eve and let me know that one of the results (the tissue transglutaminase antibody) was consistent with Celiac. She suggested I go off gluten for a month and see if that helped. I tried for 5 days and gave up. After the holidays, I went to another doctor who ordered an even more Celiac specific test (endomysial antibodies). That also came back positive. I showed the results to a doctor in my church who gave me the bad/good news: “I have people come in all the time wanting these tests. Everyone thinks they have gluten problems. I never see anyone test positive. You just did.”

I started reading more medical websites than anyone should read (but we all do it anyway) and books like this and this. From everything I had read and had been told, it seemed 98% sure I had Celiac disease. The last step was to have an endoscopy and get my intestines biopsied. Although my symptoms weren’t mainly GI related, this was the only way to get a definitive diagnosis. If I had Celiac, the villi of my small intestines would look like they were under attack. Fortunately, I couldn’t get in to see a specialist until after our seven week UK trip. This meant two more months of feeling up and down, but I was feeling pretty well most of the time and not eager to change my entire life before traveling overseas. Since I needed gluten in my system for the test results to be accurate, I just kept up my carb-heavy diet like normal.

A Diagnosis I Didn’t Expect, But Then I Did

Which brings us back to the present. I had the endoscopy at the end of April–a very minor procedure, but still the first time I’ve ever had any procedure of any kind (I even have all my wisdom teeth). I’ve known for five months that this diagnosis was extremely likely, so in a way I was relieved to know that there was a reason for the way I was feeling, and it had a name and a definite plan of action. On the other hand, until that phone call it didn’t really, finally, and fully hit me that my life would never be the same. Please, please, don’t misunderstand me. There are a hundred diagnoses worse than this. I’m not dying. I don’t need surgery. I don’t have any new medications to take. In fact, I should start feeling better (and avoid nasty long term complications) if I simply change the way I eat. So one week in to my gluten free existence, it doesn’t feel like a big deal.

And, at the same time, it does. Anyone who knows me knows that I eat like a five year-old–a really picky five year-old who gives his parents fits. I’m not kidding. It’s one of the most distinctive (annoying? endearing?) things about me. Don’t tell your kids, but I eat almost no vegetables. For fruit, I do mainly apples and bananas. For decades, I’ve lived on cereal, hamburgers, hotdogs, chicken nuggets, macaroni, and pizza. In other words, gluten, gluten, and more gluten. You would be hard pressed to find someone more ill-suited to cut wheat out of his diet. My wife can testify that out of 14 lunches and dinners per week, I normally eat pizza for 5-7 of them. Between Hot N Ready’s, frozen pizzas, leftover pizzas, and going out for pizza, pizza has been roughly half of my food after 9:00 in the morning. There are plenty of gluten free options for pizza and pasta and all the rest, and I’ll probably try them all. But the loss of Krispy Kreme doughnuts, the loss of a Chick-fil-A sandwich, the loss of Chicago deep dish, not to mention the loss of convenience and community will be felt. Eating will now take forethought. Fast food will be almost impossible. Traveling will mean extra planning and preparation. There’s no way around it: this is going to be a massive change.

The Road Ahead

With so many grocery stores and restaurants now offering gluten free options, it has probably never been easier to cut out gluten from your diet. There are cookbooks and recipes and specialty products galore. It’s not at all odd to go to a restaurant and ask your server for the gluten free options. And yet, the gluten craze has certain drawbacks. Terms like gluten sensitivity, gluten intolerance, gluten allergy, and Celiac can be used interchangeably, when they are not identical. Unlike an allergic reaction, the consumption of gluten can cause long term damage in those with Celiac disease. I’ve been told it’s like falling down and scraping your knee. You can choose to do it every month and hope the knee will heal, but after awhile the knee isn’t going to work right, and it may not get better. Which is why those with Celiac shouldn’t use the butter knife that just scraped a piece of bread or fry their eggs in a pan that just fried up a grilled cheese. Caution is the name of the game.

There is an element of the diet that feels like a new challenge to conquer. I’m excited to eat all the unadorned bacon I can eat in the next fifty years. But I can already tell there will be tough days. It’s the permanence of it that is hard to fathom. I’ll see a commercial or walk by a restaurant or see my kids eating something and think, “Will I really never eat that for the rest of my life?” It’s amazing how much joy we get from eating food, anticipating food, and sharing food. This won’t be easy.

Don’t waste your weakness–if it’s true for cancer, it’s certainly true for Celiac. I don’t know what lessons the Lord is going to teach me, but I’m sure there will be plenty. I will be more sympathetic to those who struggle with chronic illnesses (often invisibly), and unless I have very good reason to think otherwise I will take them at their word that they feel as bad they say they do. I will be more quickly moved to compassion when brothers and sisters bounce from doctor to doctor not knowing what’s wrong. I will be more sensitive to “weak” people with allergies and ailments and other inconveniences (to themselves and to others). And hopefully in my own newfound weakness, I’ll learn to rely on the Lord more and lean on my own gifts less.

So it’s not a big deal and a really big deal at the same time. Over time I imagine it will slide toward the former, but right now it feels more like the latter. I led the church in Communion on Sunday with a rice cracker–weird. It still seems strange that this is my new lot in life. I suppose Celiac should make me long for the wedding supper of the Lamb, but right now it’s making me hungry for monkey bread.