Celiac Disease: I Got This. Maybe.

Eating bread

I can’t say being diagnosed was a shock, exactly. I always knew it was a possibility, and that’s why I decided to get tested now when I’m symptom free, before this autoimmune disease with a Greek name could screw me up too much (Thanks for the genes, Mom). Even so, I reasoned that my gluten-light diet (hey, it’s healthier) would mean a positive diagnosis would just mean substituting a few ingredients. I mean, I knew some of the social ramifications would suck, but I thought I understood what I was getting into.

But a real diagnosis is kind of like hearing that creepy kid in eighth grade likes you–you had your suspicions, but AREYOUFREAKINGKIDDINGMENOWAY. Here I am, just ten days after being told I’m Celiac (by the way, we need a cooler name for us gluten-intolerant folk), and saying, “So I’ve been diagnosed with Celiac disease–now what?” Just like everyone else who gets diagnosed. I’ve got a leg up on know-how, food prep and stuff, but I’ve been surprised by my own reactions. Life seems to have changed dramatically, even though it hasn’t changed much at all.

Perhaps the most surprising bit is how isolated I suddenly felt, despite a wonderful husband and great friends. It’s weird to suddenly belong to a minority with restricted food privileges. So here I am, writing for the Internet (and other newly diagnosed Celiacs who wander across this post) about the reactions that surprised me, so other people know they’re not crazy for feeling so emotional about a dumb protein. If you’re diagnosed with Celiac disease, here’s what you need to know.

1. Your relationship to food WILL change. I’ve never had to argue with my body over food until now (I recognize that I’m really lucky). I see a cookie, I eat a cookie, then I have a salad because I hate feeling stuffed and I actually like salad. I make conscious decisions on what I eat and enjoy the balance. But food has never been an enemy. But suddenly, almost overnight everything is suspect. Suddenly, for the first time in my life, the presence of food makes me mildly apprehensive. Can I eat this? I want to, but is it going to hurt me? Since I’m symptom free so far, I won’t have the benefit of hindsight for next time. You will have the same reaction–it’s all because you want to be healthy but the job is tricky. Even if you’ve had a model relationship with food up til this point, be prepared for a new paradigm.

2. You can’t really ease into a GF lifestyle. You become GF the moment you’re diagnosed. I told myself that I wouldn’t go cold turkey on the gluten stuff, since my tests show that I haven’t inflicted too much damage on myself yet. But that’s just the thing. Now I know that every bit of this weird protein I eat is actually, truly, cumulatively damaging me. A week after the diagnosis, I’m still eating some things that have small amounts of gluten, and I am conscious and guilt-ridden every time I do.

3. The transition will be easier than you think. Declining the tasty coffeecake someone brought is kind of a bummer, but you know, it’s just one choice. Making one deliberate choice isn’t hard, and my week is just full of individual choices. That’s the easy part. After all, a healthy diet naturally excludes a lot of gluten. You’ll find that a lot of foods you love are already GF, and that most parties include a veggie tray or coffee. You’ll be super glad “there’s an app for that” and so many more options than there were 10 years ago.

4. The transition will be harder than you think. You’ll have sudden moments of realization about how different life is even though it hasn’t changed much on the surface. You have to take the food with you to parties and on vacation because you can’t guarantee what will be available. You realize that people you made meals for probably can’t do the same for you, because they don’t automatically watch for cross-contamination and derived ingredients like you will. You help friends move and can’t take advantage of the traditional beer and pizza reward. You realize that you’ll have to grill the restaurants and your friends with questions about ingredients for the rest of your life. And yes, it will suck.

5. You WILL feel alone. I know people who have Celiac disease, and many more who are gluten intolerant or allergic. There is a community, and you’ll discover more and more people who live the lifestyle. But your larger community will have no idea. When you realize you can’t accept food from people because you don’t know what’s in it, and that the people closest to you can only sympathize, you will feel alone.

6. Like all life changes, in the end, you will be okay. Yes, life in America revolves around food and now you’ll have to undergo a radical shift in how you approach and think about food. But “is not life more important than food”? Sometimes you’ll be keenly aware of being Celiac, but many times it just won’t matter. Your faith is still the same; your friends still want to raise a glass with you. As summer comes, you can go hiking and running and watch old episodes of Doctor Who when it rains.

Maybe you’ll have Celiac-related issues pop up now and then, maybe not–but everyone has issues. The relationships with people stay the same, and you’ll learn how to ask for support and how to accommodate yourself and how to not snap at people close to you when they absentmindedly offer you a Krispy Kreme.

This is different, and I certainly empathize better with folks who have crazy food allergies and moms who worry about their kids accidentally ingesting something normal but harmful. But you know? I’m healthy. I have a supportive husband and friends. And life is still good.

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3 thoughts on “Celiac Disease: I Got This. Maybe.

  1. It is what it is. You’ll figure it out and move on. And the things you can’t live without will change. I used to think a life without scones (cranberry, to be exact) would make it impossible to get out of bed every day. I survived. A life without wings, though? Well, that’s another story.

    {{{Hugs}}}

  2. hey Katherine,

    I sent you a message on facebook but I guess we aren’t friends on there anymore or something. Anyway, I am gluten intolerant (not celiac actually). My gluten allergy gave me a different auto immune disorder…. Grave disease. Instead of my anti-bodies attacking my intestines.. they attack my thryoid making it hyper. It was an upward battle with drs because many still don’t believe that gluten intolerance can cause other auto immune disorders (despite newer studies and the fact that it DID heal me of an “incurable” autoimmune disorder).

    Anyway, I have been gluten free for 2 years now.. and life is kind of “normal” now. It was tough in the beginning, but it does get a lot easier. One of the books I read at the start of it was the The G-Free Diet by Elisabeth Hasselback. It was kind of a great starter book.

    If you ever want any suggestions etc… let me know! I love helping with the GF stuff. I have kind of experienced the good, the bad, and the ugly. 🙂

  3. I can relate to many of those feelings having IBS. It’s very difficult for people to make food for us and I always feel so high maintenance and I hate it. It also stinks not being able to just eat out with people, and again feeling high maintenance. It does get easier and you get used to it, but it is an adjustment. Thanks for sharing your feelings. I sure it will help and comfort others in the same situation.

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