PATIENT VOICES
Getting Diagnosed With Celiac Disease

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wheat intolerance
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Author's name has been changed.

That girl asking the waiter question after question about the exact ingredients and preparation of items on the menu? “Excuse me, sir, is it possible to make this gluten-free?” Sadly, that’s me—but not because I chose to be.

I was recently diagnosed with celiac disease, an autoimmune disease that causes my body to respond to gluten, a sticky protein found in wheat, as an intruder. The events that led to my diagnosis have made me more acquainted with the healthcare system in Durham, N.C., than I would have liked, but getting clarity on what had plagued me for so long was well worth the journey.

When My Symptoms Became Too Much to Handle

I’ve had a sensitive stomach for half of my life. I was a picky eater as a child and as I got older frequently experienced stomach aches and irregular digestion. But until the last year, I’d been able to manage these issues by eating more simply, sticking to routine comfort foods, and responding to whatever issue presented itself with over-the-counter treatments.

Then, in the last year, my symptoms became more severe and more frequent. I’ve gotten really sick three times with extreme nausea, upset stomach, and fatigue. During one bout, I went to see my primary care provider, who thought it was likely a virus, especially because as a research technician looking at early child development, I work a lot with kids. I remember she asked about dietary triggers, but as I tended to stick to the same foods, I didn’t think that cause was likely. Then, after the last bout of symptoms left me hardly able to move for several days, I went in for more intensive screening.

My family doctor ran a host of blood tests and the results were all normal with one exception: I had extremely high levels of a certain antibody that is highly reliable in indicating celiac disease. This was the last thing I expected. I had anticipated having Irritable bowel syndrome (IBS) or lactose intolerance, but not a gluten problem. My doctor suggested I cut out gluten immediately and referred me to a gastroenterologist (GI), a doctor who specializes in issues relating to the digestive system.

Finding a Doctor—And a Definitive Diagnosis

Because I work as a research assistant for a clinic at Duke University, I have been on Duke’s healthcare plan since I started my job. I chose the basic plan as it made the most sense for my budget and needs, but I’ve found my coverage often doesn’t extend outside of Duke’s system. And due to the high demand for appointments with Duke doctors, I found it challenging to get on their schedules. But I persisted and was able to make an appointment a few weeks out at a Duke GI clinic.

I did feel better within a week of cutting out gluten products following the blood test results, but when I had my consult with the GI doctor, I found out the only way to truly confirm celiac disease is through a biopsy of the small intestine. For the test to be informative, you have to be on a gluten diet, so doctors can see if your body has a reaction to it. Since I wanted to be sure of my diagnosis before making a major lifestyle change, I decided to try it. Thanks to a cancellation, I was able to book the procedure within a few weeks at the Duke Clinic and avoid a longer wait. In the meantime, I figured I could enjoy some of my favorite foods again, potentially for the last time.

Unfortunately, reintroducing gluten products, including my last few beers, made me really sick within a week. I managed to eat a bit of gluten here and there to try and increase my chances of the biopsy being conclusive, but it was difficult.

Thankfully, the procedure went smoothly. When I woke up, the surgeon came in and told me my small intestine looked characteristic for someone with celiac, but that the pathology report would have to confirm it. A week later the results came in, and my original GI provider said yes, the test confirmed I have celiac disease.

My Lessons for Living With Celiac Disease

I’ve learned a lot throughout this process, and am still navigating my new reality. Every provider I’ve met with has been knowledgeable, attentive and understanding, but I had to be my own advocate to get in to see who I needed. I learned to expect to book an appointment a month in advance, and therefore to plan ahead should a follow-up be necessary.

Although I’ve felt a lot better, the diet changes have been harder than I anticipated. Since removing gluten, I’ve found I more easily react to it when ingested on accident. Learning where gluten hides is also a process, and I’ve accidentally eaten it several times in the past few months. Psychologically, this has been a difficult adjustment. It’s easy to feel paranoid when going to restaurants, wondering if something unexpected will trigger a bout of illness. And sifting through the sea of content on the internet related to gluten-free eating can be tiring too, especially as it has become a popular preference diet. Thankfully, I’m meeting with a dietitian who has guided a lot of patients through a celiac disease diagnosis.

Looking back, my advice for someone going through a similar experience would be to persevere in figuring out the root of your symptoms. I found that doctors in my network really wanted to help me find a solution, but getting in the door required planning and patience, which is hard when it’s your health and daily functioning on the line. I also suggest always getting the opinion of a nutrition professional when making dietary changes. For someone like me who has historically had a difficult relationship with food, having a clear professional directive frees me up to not worry so much about every potential reaction to every food, and takes the burden off me to find out all I can on my own.

Managing celiac disease can seem daunting, but working as a team with your doctor and nutritionist is well worth the effort. And with more and more celiac friendly diet options available at stores and restaurants, it doesn’t mean the end of all the foods you hold dear either.

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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.