For as long as I can remember, my stomach was a problem.

Some of my earliest memories of unexplained symptoms go back to around age eight. I was lactose intolerant from childhood, had intermittent stomach pain when I ate, struggled to gain weight, and could lose weight far too easily. I went to the doctor so often that visits became a familiar part of growing up.

But no one ever gave me a clear explanation for why I felt the way I did.

Instead, I heard that I was anxious. I had a "nervous stomach." It was in my head. I was being difficult.

As I moved into my tween years, one pediatrician suggested that I eat a piece of bread or toast before breakfast to settle my stomach. I followed that advice, and eating bread before breakfast became part of my routine for more than a decade.

Looking back now, knowing I would eventually be diagnosed with celiac disease, that advice carries an irony I can't ignore. It was one more sign of how far from the answer I was.

But at the time, I didn't know. Neither did the people caring for me. The symptoms continued, and I kept searching for an explanation, even as the questions followed me into the next stage of my life.

When Being Sick Becomes Part of Your Identity

My stomach problems followed me into adulthood and eventually into nursing school.

Some days I couldn't make it through a shift or had to leave early. The hardest part wasn't just the physical symptoms; it was never knowing when they'd happen.

When you repeatedly miss things because you're sick, even when you desperately want to be there, people begin to see you differently.

I became the "unreliable" person.

That label hurt because I wanted to show up. I wanted to work. I wanted to spend time with friends and family. I wanted to be dependable. I just couldn't always predict what my body would do.

At one point, things became so bad that I went to the emergency department 18 times in a single year. During one of those visits, a social worker was sent to speak with me about why I was "seeking care."

The answer seemed simple: I was sick, and I didn't know why. That question stayed with me as I kept searching for the cause.

Thankfully, my primary care provider believed something was wrong. We pursued testing, gastric emptying studies, and Gastroenterology evaluations, but no one could tell me what was causing my symptoms. All of my testing was ‘normal’.

Eventually, I was diagnosed with IBS, and for the next couple of years, that became the explanation.

Even with that diagnosis, it still didn't explain everything, and the questions remained unanswered. I kept looking because the diagnosis had not brought closure.

By the time I finished nursing school, something had changed—not necessarily in my symptoms, but in me. I had more medical knowledge, a better understanding of the healthcare system, and more confidence that I needed to advocate for myself with the same persistence I used for patients.

I had more medical knowledge. I understood the healthcare system better, and I had learned how to advocate for patients. That made it clearer that I needed to advocate for myself with the same persistence, and I began doing just that.

Most importantly, I became more confident in believing what my body had been telling me all along:

This wasn't simply in my head.

I advocated harder. Eventually, I arranged standing orders for monthly IV fluids, which helped me manage for a while. Even then, the deeper question was still unresolved.

The fundamental question remained unanswered.

Why was I sick?

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The Answer Came From Somewhere I Didn't Expect

In 2020, my mother was dealing with her own health problems and needed an upper endoscopy.

She was diagnosed with celiac disease.

As soon as I found out, I went to my primary care provider and asked to be tested.

She ordered celiac bloodwork, including a tTG-IgA and total IgA. My tTG was only 4. On paper, it wasn't the obvious answer I had spent years looking for, but it opened the door to the next step.

This time, something was different. My PCP knew my history and the years of symptoms that had come before that result. She pushed for an upper endoscopy, and that led directly to the answer I had been searching for after so many years.

At 34, I finally had an answer.

My biopsies were positive for celiac disease.

After years of wondering what was wrong, I finally had something tangible, and the pieces began to fit. At last, the diagnosis matched what I had lived through, and everything shifted.

I had celiac disease.

I make an important distinction whenever I tell this story. I don't know when my celiac disease actually began.

My unexplained symptoms started in childhood, but I can't say that every stomachache, every episode of weight loss, or every symptom I experienced was caused by celiac disease. What I know is that I had unexplained symptoms beginning around age eight, and I was ultimately diagnosed with celiac disease at 34.

I thought finally having an answer would be the end of the hardest part. Instead, it was only the beginning of a new kind of challenge.

I Had a Diagnosis. Now What?

After my diagnosis, I was told to go gluten-free. That sounded simple enough, but I quickly learned that diagnosis was not the same as understanding how to live with celiac disease. I had to begin turning an answer into a daily way of living.

The gastroenterologist who performed my endoscopy sent me a message with a link to a Mayo Clinic page about celiac disease.

And that was essentially it. I didn't receive a roadmap for what came next, and I felt that absence right away as I tried to figure out how to move forward on my own, from diagnosis to daily life.

I didn't receive a roadmap for what came next. No one sat down with me and explained cross-contact. I wasn't given clear guidance about follow-up care or everyday life with celiac disease. I had to learn how to read labels differently, question meals I once trusted, and rethink routines that had always felt automatic.

I had spent years searching for an answer. Now I finally had one, but it felt like: Here's your diagnosis. Now go figure it out. That left me with a long stretch of learning ahead, and I had to begin by taking it one step at a time, starting with the basics.

So I started figuring it out, one small decision at a time. At first, even simple choices took extra thought, and every meal felt like a new question. Over time, that daily uncertainty became part of living with celiac disease.

I researched. I read. I learned. And sometimes, unfortunately, I learned because I ate something I thought was safe and quickly realized it wasn't.

Before celiac disease, I would have called myself a gluten connoisseur. I loved gluten-containing foods and ate them every day. Bread and pasta weren't occasional indulgences—they were normal parts of my life.

Then, practically overnight, food became something I had to analyze, and it changed how I approached nearly every meal. What had once been effortless now required attention and planning, and I had to build new habits around that reality as my daily routine changed.

Is this safe? Could gluten be hiding in this? How was it prepared? What happens if I get this wrong?

That uncertainty didn't stay in my kitchen; it followed me everywhere I ate.

Going to a friend's house or attending a family gathering suddenly came with a new layer of anxiety. Would there be anything safe for me to eat? Would someone understand why even a small amount of gluten mattered? I had to learn how to ask questions, prepare ahead, and decide when it was safer to bring my own food. Those choices became part of how I protected myself.

I learned to eat before I went places or bring my own food with me. It was often easier than trying to explain, feeling like a burden, being asked why I was never seen eating, or wondering whether I could trust what they were serving.

Food had always been part of the challenge, with no way to know when symptoms would happen or what food might be safe even before diagnosis. After diagnosis, I had a direction, but eating still required more planning and vigilance.

There was grief in that adjustment, too. It wasn't only about changing what I ate; it was about grieving the ease I had lost and the confidence I no longer felt. I had to make room for that loss while also learning how to move forward.

I wasn't simply giving up a few foods I didn't care about. I loved gluten. Changing the way I had eaten my entire life was hard, and it took time to accept that this loss was real.

I also experienced significant mood changes after abruptly eliminating gluten. When I brought this up, I was told that stopping gluten wasn't causing them. But I knew what I was experiencing in my own body. For me, those mood changes continued for about two months after going gluten-free and then resolved.

It was another reminder of something my years as both a patient and a nurse had taught me: People need to feel heard, especially when the transition is a complete lifestyle change.

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From Fear to Confidence

At first, it was overwhelming, but it didn't stay that way. What once felt like constant uncertainty slowly became something I could manage with more confidence and less fear.

The more I learned, the less frightening everyday decisions became. What had initially felt like an endless list of things I couldn't do gradually became a set of skills and routines I understood. That shift opened space for a life that felt more possible again, and it showed me that post-diagnosis life was still changing in ways I could begin to recognize and manage.

That growth has been especially important in my own home, where I continue to apply what I have learned.

I'm the only person with celiac disease in my household, and gluten is still present in our kitchen. Early in my diagnosis, that felt incredibly intimidating. Over time, I learned how to live with that reality instead of being controlled by it. That shift became another part of adapting after diagnosis.

Today, we share a kitchen successfully.

We've modified how we store, prepare, and handle food to reduce cross-contact and keep my food safe. It took education, communication, and changes to our routines, but we've learned how to make a shared household work for our family. That process didn't happen overnight. It took repetition, mistakes, and patience before it started to feel natural, and home became another place where I kept learning how to live with celiac disease.

That experience taught me something important: living safely with celiac disease doesn't have to mean living in constant fear of gluten. It can mean learning, adapting, and building confidence over time.

Knowledge changes things.

Having practical strategies changes things.

And having someone help you apply all that information to your actual life can make an enormous difference. That is what turns information into lasting change. It is also what helps the post-diagnosis period become something you can move through, rather than something that stalls you.

That's what I was missing when I was diagnosed. My experience made me realize I wanted to help fill that gap for someone else.

Finding My Way to The Whole Celiac

I kept coming back to one thought:

I don't want another person to receive a celiac diagnosis and feel like they've been told, "Here's your diagnosis. Now go figure it out."

Because celiac disease is about so much more than knowing that bread and pasta contain gluten.

It's standing in the grocery store trying to decipher a label.

It's learning about cross-contact.

It's figuring out how to safely share a kitchen with family members who eat gluten.

It's going to restaurants, traveling, celebrating holidays, visiting friends, and attending family gatherings.

It's wondering whether something you saw in a Facebook group or on Instagram is accurate.

It's Googling a question and finding five different answers.

And sometimes, it's simply wanting to ask someone, "Am I doing this right?"

I wanted to create the kind of resource I wish I had when I was diagnosed.

That idea became The Whole Celiac.

As a Family Nurse Practitioner who also lives with celiac disease, I come to this work from two perspectives.

I understand the clinical side of celiac disease, but I also understand what it feels like to live it.

I've stood in the grocery store reading labels. I've brought my own food to gatherings. I've worried about cross-contact. I've gotten sick while learning what was and wasn't safe. I've navigated a shared kitchen. And I've searched the internet wondering whether the information I was reading could actually be trusted.

Those experiences are why I want The Whole Celiac to be more than another source of information.

I want it to be a trusted, evidence-informed resource where people can bring the questions that arise in real life. A place where someone can say, "I saw this online—is it true?" or "I'm struggling with this—what do I do?" without feeling dismissed or embarrassed for asking.

Most of all, I want people with celiac disease to feel heard, supported, and whole.

Because a diagnosis gives you an answer.

Learning how to live with that answer is a journey in itself.

If you're navigating celiac disease and wondering what comes next, you don't have to figure it all out on your own. The Whole Celiac provides trusted information, practical guidance, and a place where your questions are heard.

Learn more about how The Whole Celiac can support you, or schedule a free 15-minute consultation.