I Found Out I Had Celiac Disease at Age 23

“I can still eat pizza and bagels, right?”  

That was my first question when my gastroenterologist broke the news. Her response? A horrified look and a big fat ‘nope.’ In my mind, I’m thinking about how I used to joke about being gluten-free.

But really, I cannot be this girl.

Let’s back up a little – and let’s get a little TMI – I’ve been battling with IBS (irritable bowel syndrome) and other digestive issues for nearly five years. In that time, I had all the tests, the scopes and the procedures to try and determine what was happening in my body and what I could do to fix it. But at the end of every appointment, the doctors would tell me nothing more than “it’s IBS” and prescribe me on a bunch of different medications. If you name a stomach medication, I’ve probably heard of it and can give you a review. But even with all of those orange bottles hanging out in my cabinet, nothing truly helped in an impactful way. When I left home and moved to New York City, I put my big girl pants on and decided it was time to see a different doctor.

Surely, I couldn’t just feel this way for the rest of my life? Something had to give.

When I walked in with my test results from previous procedures and blood labs, she immediately said, “So, we’re here to talk about your celiac disease.” And of course I looked at her like she was crazy. In my records, my previous doctor noted that he saw inflammation that could be indicative of celiac disease, but wanted to do a blood test to confirm. In his report, my blood test came back as a “weak positive.” Here’s what that means: This number can vary based on the amount of gluten you eat beforehand. In his opinion, I had IBS and this was not indicative of celiac disease. My new doctor said having a “weak positive” celiac test is the same as having a “weak positive” pregnancy test—in other words, you have it or you don’t. She did another blood test and confirmed with ‘high positive’ results that I did indeed have celiac disease.

So, I’m 23. And I have Celiac disease, a diagnosis I’ll have and manage for the rest of my life.

Since not everyone decides to get these types of procedures, and blood tests vary based on the amount of gluten consumed, this condition can be hard to detect. Celiac also gets buried beneath the “gluten-free” and “gluten-sensitivity” craze. While this has certainly made it easier to be a celiac in a gluten-filled world, it has caused major misconceptions about gluten-free.

Jill Weisenberger, MS, RDN, CDE, CHWC, author of The Overworked Person’s Guide to Better Nutrition, sheds some light on the differences between celiac and gluten-intolerance. “Some people likely have an intolerance to gluten that is different from celiac disease,” she says. “These individuals may find that small amounts of gluten pose a problem or pose no problem. Celiac disease is an autoimmune disorder.”

Not to sound dramatic, but my life really changed from the moment I found out.

No more late-night pizza (or really any late-night at all) with friends. No more fancy cocktails or fireball shots. No more walking into a restaurant and feeling bad for those with complicated food issues and allergies on the menu making the waiter triple-check with the chef (I was now that person). No more dreams of visiting Italy and tasting my way through the best pizza, pasta and bread in the world. It really felt like a lot of rules and a lot of no’s. I had to not only worry if the food was a gluten-free item, but whether or not it may be contaminated by gluten cooked in the same skillet or packaged in the same facility.  

It was all too much. And at times, still is.

I often get asked, “Can’t you just eat it and feel sick after?” from people who don’t understand. Unfortunately, not eating gluten isn’t really a choice. Once you’re armed with what it can do to someone with celiac disease, choosing to put your body in harm’s way can be pretty tough.

“People with celiac disease who do not follow a strict gluten-free diet increase their chances of nutritional deficiencies, infertility, thinning bones, skin disorders, intestinal cancers and even more problems,” Weisberger said. Ouch – these sound worse than a stomachache.

You’d be surprised how limited you are once you try to eliminate gluten. It’s not only cutting out wheat, barley and rye, but it’s most marinades, pastries, sauces, processed meats, fried foods, soups and stocks. There’s so much mixed information out there it can be overwhelming. But of course, there is a silver lining.

Has it been a difficult change to make? Yes. Have my tummy woes been completely resolved? Yes! Not only that, but I almost never feel bloated and have had perfect skin since my last bite of gluten. I feel healthier overall. 

Though you might want to jump on the gluten-free bandwagon (I get it, we all want to drop a few at times), consider the importance of restaurants and snacks offering options for folks like me, who have a serious reaction. If you – or anyone you know! – has difficult symptoms anytime and every single time they eat something with gluten, consider getting tested. Though it’s a bit invasive, knowing how to take care of your body isn’t just a healthy choice to get you in the best shape of your life, but to extend the quality of your life, too. 

Cutting out gluten made me realize that most of the food choices I were making weren’t healthy, and while I still crave a gluten-rich foods as much as the next girl, the benefits for me have really outweighed the cravings.

RIP, $1 slice of New York pizza. I miss you – but I’m better off without you. 

Haley Lindenberg is the Community Manager at ClassPass living in New York City. You can find her trying new workout classes, traveling, reading and finding every gluten-free friendly restaurant on the map. Follow Haley on Instagram.