I think one of the hardest aspects of a diagnosis like celiac or a food allergy is the finality of it all. At first you’re just so grateful to have an answer and relieved that it wasn’t one of the other seemingly-more-frightening options tossed around as a diagnosis. However, in time, that relief gives way to an overwhelming sense of “Wait, this is forever? Like forever forever??”Again, the feeling passes, you gain confidence in yourself and in your new lifestyle…and yet some time down the road, that “Wait, forever?” feeling comes out of nowhere and hits you like a ton of bricks. Now, at this point I’m sure there’s a good chance you’re thinking, Gee, Katie, thanks for the pick-me-up post today. I promise isn’t one of those rare downer posts…rather, it’s a reminder and an assurance that you’re not alone in having thoughts like these. And I don’t think it’s restricted to just food issues either.
Somehow July has already come and gone, and with it my 4-year Celiac-iversary. Crazy, I know. This year the day passed unceremoniously. I didn’t bake a cake or go to dinner at Sweet 27. Honestly, the day was almost over when I even realized the date. (Summer school with 7-year-olds will do that to a person!) A few days later, I had one of those “wait a minute, this is forever?” type moments. For me it happened at church. (I know, I know: who didn’t see that one coming??) There’s a church within walking distance of my new apartment (AKA new as of March, I didn’t move again haha) that has a 6:55 morning mass. One morning I decided to walk over for mass. I went to the freezer and retrieved a low-gluten host, gathered my belongings, and headed out the door at 6:30- plenty of time to make the 15-minute walk and arrive by 6:45 to inquire about how they handle low-gluten host distribution. Well, apparently the church website is a bit outdated, because just when I opened the door at 6:45 on the dot, the procession had begun. I missed my chance. I stayed for mass, the homily was beautiful, and it was still a nice way to start the morning…but I didn’t get to receive the Eucharist. I was so pained by it that for a brief moment during the Eucharistic prayer, I actually pondered going up in line anyway. I actually had the conversation with myself, “Well, maybe it will be OK to take the chance? I mean even if I get sick, won’t it be worth it?” Fortunately, my rational side won out (with a little assistance from the Spirit if you ask me) and I knelt in prayer during the distribution of Eucharist. And as I prayed, I couldn’t help but get that feeling in my stomach as I watched everyone else process up: This is forever. I will never just waltz into mass at the last moment, or randomly pass a church and decide to stop in for mass without my pyx in tow, and process up to fully participate in the Eucharist. Though as sad as I was about that, I think it was exacerbated by the fact that I felt frustrated: here I am, 4 years later- I’m healthy, I’m happy, I encourage other people to embrace their food issues…and yet I still have these moments? What is wrong with me??
I took a long walk after mass and pondered this question. That’s when I realized: there’s nothing wrong with me. Well, in regard to the question at hand I mean. We humans have created a society that is very end-goal-oriented. We plow through to-do lists. We earn diplomas, degrees, and certificates, that say You’re Done, You’re Licensed, now check that off the list and move onto something else. We run races which, even if it’s many miles away, always end with a finish line. We plan road trips which may include a few detours, but are never without that checker-flag final destination typed into our GPS. We’re not a society which does open-endedness well. We’re the Marthas of the Gospel from that morning mass last week. We rush through life busily getting things done, and we don’t like to stop and pause for anything, even Jesus himself sitting in our living room.
I think this reality is what makes chronic illnesses, or any permanent life-altering event, such a challenge. There’s never a point where it’s over or you’re cured and it’s just a blip on the radar and you’re back to regularly-scheduled programming. A chronic illness is forever, and that’s also a word we don’t do well with in this society. I mean just look at the divorce rate, or the number of people just foregoing marriage to live together: commitment scares a lot of people, and forever means whatever we want it to mean when it’s convenient. So when something comes along that really is permanent beyond our control, our brain just can’t quite process that- and it’s totally understandable. It seems logical that the first year of a new reality would be the biggest challenge, because we’re actually not yet sure that we can handle each holiday, event, etc. arriving in a way that isn’t the same as it used to be. However, I can tell you in my experience, that’s true: the first year is hard and you feel a sense of accomplishment when you’ve made it through….but it’s those random moments afterward that get you; when you get upset on a random Tuesday afternoon when you come across some remnant of your former life, or a quiet Sunday night when you realize that there are still many major life events on the road ahead that won’t look quite like you always imagined. Those are the moments when you feel crazy for being upset, but take it from me, you’re not crazy.
So, what does all this mean for you? Well, two things. First, it means you shouldn’t beat yourself up when moments of doubt sneak up on you, even 27 years into your new reality. This is not a sprint, and it’s not even a marathon, because even those end. This is a forever journey, and unless you have some superhuman magical powers, there will be moments of doubt, darkness, and weakness. You’re not alone in that…and there’s certainly nothing wrong with you. Second, it’s particularly important to keep this in mind if you have celiac, or another food allergy/intolerance, because the reality is, in your case, your continued health is a choice. In those moments of darkness and weakness where you are shocked to find yourself considering just one bite of real cake at a wedding expo or one lick of an ice cream cone on a sweltering summer day, it is 100% your choice. It’s the unique aspect of our condition: there’s no doctor adminsitering the treatment or a nurse overseeing our case 24/7. There are no pharmacists measuring out the appropriate dosages. You are 100% in control of what enters your body (or your child’s if you’re the parent of a young celiac patient). There will be moments when you’re tempted, but we all know the tradeoff is not even close to worth it. Forget the way you’ll feel for the next few weeks, there are longterm effects too
So now the practical advice:
1) Find a friend. Or several. Have someone to call in those dark, defeatist moments. You’re not on this earth alone for a reason. I can assure you I wouldn’t have made it through the past 4 years without the listening ears and comforting hugs of the smiling faces below. If you’re not sure who to turn to, you can always call me, I’m usually pretty good at making people feel better…and I can probably whip up some you-safe comfort food. Which brings us to #2…
|I’m very blessed when it comes to the friend department 🙂
2) Have a you-safe comfort option. I think it’s important to have a certain treat that is both you-safe and somewhat easy to obtain for moments such as these. When you’re feeling bad that everyone else is indulging in a summer ice cream treat, go spend the absurd $6 for a pint of you-safe ice cream. It can’t be a regular habit (financially I mean) but sometimes you just need that.
|Here’s my newest go-to comfort food.
So expensive…but SO Delicious!
3) Be a Mary. If you’re not a Bible reader, this one may be confusing. Essentially Mary is the opposite of the Martha described above. Martha is busy, stressed, and anxious about getting a meal served and the kitchen cleaned; her sister Mary recognizes the importance of the present moment and sits at the feet of Jesus. Don’t spend your life caught up in the hamster wheel, checking things off and running onto the next. I hate to break it to you, but celiac isn’t going to get a checkmark next to it. Even this cockeyed optimist has given up on the 2026 dream. It’s just not worth setting timelines for such things I have no control over. Live in the moment, enjoy the precious encounters you do have with people, places, and even food….because we don’t know how long forever is for any of those things either.
So get out there and keep making your forever the best it can possibly be: one day and one moment at a time 🙂