For most of my life, I was able to eat just about anything. And I did. I ate things that were healthy, things that weren’t, and I could pick up food to eat basically anywhere I went. This wasn’t something I consciously thought about most of the time. I just went about my normal day-to-day living with pretty average experiences with food. I only really had to confront the fact that I could eat like that whenever someone told me they had a food allergy or other dietary restrictions. Every time someone told me that they couldn’t or didn’t eat something, I’d always think to myself: “I don’t know how I’d live without [insert name of delicious food here].” Because most of the people in my life could also eat the same way I did, I usually forgot about those thoughts and moved on with my day. Aside from having a fair number of vegetarian friends, I didn’t have anyone close to me who had a food allergy or sensitivity.
And then I became the person who couldn’t anything — or what felt like anything.
This wasn’t a sudden change. In the years surrounding my celiac disease diagnosis I developed several other food sensitivities that made me have to start from scratch with how I approached food. This did involve a pretty substantial lifestyle change, not only for me but also for those close to me. However, now that I’m in a place where I understand how to manage my illness while also enjoying food again, it’s easier for me to look back on what I went through pre-diagnosis and understand what was going on at the time.
My journey with celiac disease began when I was figuring out what I was going to do with my life. It was the summer before my final year of high school and I had all the pressure of university applications and choosing a lifelong career path, but I also had the excitement of life after high school. But while this was going on, I was also feeling sick all the time. One week I was completely fine, the next I had crazy stomach pains and horrible acid reflux – the kind that no medication could really help. I was in and out of the doctor’s office more times in a couple of months than I had been my entire life. I thought it was a stress-related problem and, unfortunately, so did my doctor.
I spent the next couple of years just getting used to feeling pretty terrible all the time. All of my problems kept getting worse and I didn’t know what to do to stop them. I was on medications to take care of my acid reflux and my increasing bloating (Woo! New symptom!), but that didn’t really help me at all. I was also sent to psychotherapy to deal with my “stress” but my stomach felt the same as it had before. Day after day, I just kept taking medication and becoming increasingly frustrated. But without any solutions after going to multiple doctors, I didn’t see anything I could do so I just tried to keep on going with my normal life as much as I could. It wasn’t until I had that fateful bowl of ice cream that everything started coming together…
So one of the more common symptoms of celiac disease is that you will begin developing sensitivities to other foods. This is because each time you eat gluten, your body is attacking itself. For a lot of people, this often ends up becoming lactose intolerance or other issues with dairy. Other food sensitivities often come along, but sudden lactose intolerance is probably the most common one. In my case, I discovered that I might have a problem with dairy when I couldn’t finish a bowl of ice cream without getting sick halfway through. That was the most sudden reaction I’d had to any food at that point and it made me realize that maybe certain foods were part of the problem. So I tested the waters with dairy to see if it was a fluke. At first, I was able to eat other dairy products, like cheese, with lesser effects like bloating or discomfort, but ice cream was definitely still a no-go. I continued to eat the kinds of dairy I seemed to be able to tolerate, but I had to stop when these symptoms eventually worsened. Over the course of a few months, I went from being able to tolerate that discomfort when I ate a slice of pizza or something cooked in butter to not being able to eat dairy at all without getting sick. But even cutting out this whole food group, I still had a lot of the pain and discomfort I’d had before.
I then tried cutting out gluten, per my doctor’s suggestion, but this didn’t fix everything. That’s also the point when I went for celiac testing – which I’d dreaded because I loved gluten so much. But then I got a negative test result so I thought I was in the clear. The funny thing about celiac disease tests is that you have to be eating gluten for them to work because your body needs to produce antibodies to the gluten, and it’s those antibodies that the test detects. Being the proactive person I am (and also unaware of what the testing involved) I cut out gluten for a few weeks just in case it turned out I had celiac disease. So that initial celiac test had actually given me a false negative result – I just didn’t know it yet.
It took about another six months or so of feeling terrible all the time to go seek other medical advice. Per a longtime family friend’s suggestion, I went to a naturopathic doctor close to where I lived. That was my first experience with naturopathic medicine and I wasn’t sure what to expect. That doctor put me on an elimination diet. Basically, that means that I had to cut out every common allergen and start from scratch (it was a looooong list). I had to slowly reintroduce these foods to figure out just what was causing my problems. If a certain food made me feel sick, it was permanently cut from my diet. This wasn’t something I was excited to do, but after a few years of feeling sick all the time and not knowing what was wrong with me, I was willing to try anything. Thankfully, that kind of testing really worked for me.
I’m not going to say that it was easy to adjust to something that drastic, but it was the only way I could pin down exactly what was making me feel so sick. Dairy was quickly on my no-go list, followed shortly by corn. Eventually I also had to add soy, chocolate, shellfish, and, of course, gluten to the list. I eventually went back for that celiac testing and my suspicions were confirmed: I had celiac disease. More than that, I now knew that I had five other food sensitivities to deal with and I had to figure out how to eat again.
As much as I felt a lot of negative emotions—frustration, confusion, and hopelessness—I also felt something else from my celiac disease diagnosis: relief. At least now that I knew what was making me sick I could prevent myself from feeling that way.
Within the first week of being completely allergen-free, I felt better. I felt so much better, in fact, that I hadn’t realized just how terrible I’d felt before. Even other people in my life were surprised by how alive I looked and how much more energy I seemed to have. I hadn’t realized how much of a zombie I’d been before I’d cut out all of these allergens. But even as a Celiac+ member (as I like to call it), I couldn’t just focus on all the foods I’d had to ‘eliminate’—as my naturopathic doctor’s diet had made me think. Instead, I had to learn to work with all of the things that I couldeat and make the best of them.
Since then, I’ve been on a long journey to understand how to make the best of my situation. There have definitely been some very low points and many times that I’ve felt hopeless just thinking about all of the things that I’ll never be able to eat or experience again. I won’t say that that doesn’t still happen from time to time, but I’ve also come to realize that I can manage my celiac disease. I have a new relationship with food, I’ve learned a lot about myself, and I have realized that life isn’t over when you find out that you can’t eat gluten.
That’s where this blog comes in. The beginning of my celiac journey is only just part of it; there’s so much more I want to share with you. I won’t shy away from some of the more challenging parts of celiac disease, but I also want to show you all of the things I’ve learned about eating when you have food sensitivities, allergies, and intolerances. I’ve even found out how to make food that makes me forget that I’m Celiac+, or that my non-celiac friends and family actually like better than some of the food they usually eat. Yes, I can cook things that taste just that good.
Having gone through about a decade of these kinds of experiences, I have lots of celiac wisdom. Whether you’re just starting your journey with celiac disease or food sensitivities, or if you’ve just begun—I got you.
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We’d love to hear from any of you about your own experiences with this! Have any of you out there had similar experiences to mine? Or is there anyone out there who is going through some of these challenges who isn’t yet diagnosed?