‘Here’s How I Knew I Had Celiac Disease’: One Patient’s Story

Updated: Apr. 17, 2024

National data say up to 80% of people who have celiac disease don't even know it. One woman describes the moment when the feeling of excessive bloat had finally pushed the bounds.

Celiac disease affects around 3 million Americans, but fewer than one in three have been diagnosed, according to the Celiac Disease Foundation. The foundation defines celiac disease as a “genetic autoimmune disease” that causes “the body to attack its own small intestine” and that “can lead to many other devastating health conditions, including cancer.”

The main trigger for celiac disease is gluten. Gluten is a protein in wheat, barley, and rye that “helps foods maintain their shape, acting as a glue that holds food together,” the Celiac Disease Foundation explains. When someone with celiac disease consumes gluten, it triggers their immune system to attack the small intestine, which plays an essential role in nutrient absorption. This autoimmune attack causes inflammation and damage to parts of the digestive system.

In recent years, gluten-free diets have soared in popularity, not just for those with celiac disease but also for others who find appeal in the potential health perks like weight management and alleviation of symptoms like bloating, abdominal pain, diarrhea, and fatigue, which overlap with signs of celiac disease. However, for those diagnosed with celiac, cutting out gluten is not just a choice—it’s a medical necessity.

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If left untreated, celiac disease can lead to severe health complications, including, but not limited to:

  • Type 1 diabetes
  • Multiple sclerosis
  • Anemia
  • Osteoporosis
  • Infertility
  • Heart disease
  • Certain intestinal cancers

As the foundation mentioned, celiac disease often runs in families and can present at any age. Alberto Rubio Tapia, MD, a Cleveland Clinic gastroenterologist, says that if you or someone you know is diagnosed, it’s wise for immediate family members to get tested, too.

Diagnosing celiac disease starts with blood tests for certain antibodies and genetic testing for specific human leukocyte antigens (HLA-DQ2 and HLA-DQ8). If these tests point to a celiac diagnosis, the doctor may order an endoscopy to take a closer look at the small intestine and confirm the diagnosis. It’s key to remember that some people might not show any symptoms at all, or they might develop the disease later in life in response to events like pregnancy, surgery, or severe stress.

The treatment for celiac disease is a strict, lifelong avoidance of gluten. However, before jumping into a gluten-free diet, get tested. Going gluten-free too soon can skew blood test results and inadvertently hide the disease. Even though individuals diagnosed with celiac disease have to eliminate many foods from their diet, they can typically still enjoy naturally gluten-free options like fruits, vegetables, meats, fish, poultry, beans, legumes, and grains like quinoa, rice, and amaranth.

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Dr. Tapia says celiac symptoms usually improve within weeks of eliminating gluten, and antibody levels often normalize within six months to a year to help bring the immune system back into balance. Healing the small intestine takes longer, particularly in adults, with about 40% recovering within two years.

Ahead, we share the journey of Chelsea H., a 33-year-old from Lakeland, FL, who was diagnosed with celiac disease after experiencing years of unexplained symptoms. Here’s what happened when Chelsea listened to her gut—literally—and embraced a gluten-free lifestyle.

How I knew I had celiac disease: A patient’s story

By Chelsea H., as told to Dr. Patricia Varacallo, DO

Back in February 2019, I was officially diagnosed with celiac disease. As I look back, I think the signs were there even during my high school years.

I remember feeling bloated and uncomfortable after chowing down on common foods, like pizza and pasta, which I chalked up to indulging in too much junk food. It was easy to ignore at first, with the symptoms popping up here and there and not sticking around too long.

What celiac disease can feel like

It wasn’t until I was settled into life after college and started my career in marketing that my health began to go downhill. The bloating wasn’t just an occasional annoyance anymore; it was frequent and painful and at times so severe that I feared I could’ve passed for being pregnant. I found myself opting for looser clothing to hide it.

Plus, I was constantly exhausted, barely scraping together the energy I needed for work and struggling to stay sharp and focused. At first, I thought: OK, maybe it’s just the stress of adulting and getting used to balancing a career. Meanwhile, pasta had become a budget-friendly, simple dinner and I continued to eat it often.

I’m not the type to rush to the doctor because I really dislike medical appointments. I remember once developing this weird rash on my right arm, a condition I would later learn is called dermatitis herpetiformis, a classic sign of celiac disease. I popped into an urgent care clinic, where they prescribed me a cream that did absolutely nothing. When the rash lingered, it was clear I couldn’t ignore it anymore.

Feeling increasingly worried about these persistent issues, I finally made an appointment with a primary care doctor. She listened as I explained my symptoms: The constant bloating, the sharp pains in my upper abdomen, and how drained I felt all the time. She thought it might be irritable bowel syndrome (IBS), which is basically when your gut becomes a rebel without a cause, leading to symptoms like mine without any obvious underlying disease.

She decided to run a comprehensive panel of blood tests, including one for celiac disease. I had heard of it, but I didn’t know much at all about it. She mentioned it could be genetic, and because I’d been adopted as a child, there was no easy way to check my family history. She was also suspicious about the rash, thinking it could be linked.

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Being diagnosed with celiac disease

When I left my appointment, something about the idea of celiac disease felt really on-point. I started searching for more information online, and the more I read, the more everything clicked—well, almost everything. I stumbled upon something about “celiac eyes,” which apparently can look super tired and swollen, and descriptions of what your poop might look like—typically loose and pale due to malabsorption issues. I hadn’t experienced those particular symptoms.

A few days later, my doctor called with my test results and asked me to return to her office. Sitting there, as she explained that I tested positive for the tTG IgA antibody—an indicator that my immune system was mistakenly attacking my intestine whenever I ate gluten—I felt this weird mix of relief and dread. Relief because, finally, I wasn’t just imagining all these symptoms, but also dread because, seriously? Giving up my absolute favorite foods? That part hit hard.

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Treatment after I knew I had celiac disease

My doctor sent me to a gastroenterologist for a more thorough check-up and an endoscopy. After the procedure, the gastroenterologist told me they didn’t see any obvious damage in my small intestine, but they took some biopsies. About a week later, the call came in confirming I had celiac disease and the only way to manage it: A strict, lifelong gluten-free diet. As I suspected, that meant cutting out all the usual suspects, but not only bread, pizza, and pasta. I learned that gluten appears in a bunch of sauces and seasonings (like soy sauce and salad dressings) that you wouldn’t even think had gluten in them. The thought of overhauling my diet to be so vigilant felt overwhelming.

My doctor referred me to a dietitian, who was a huge help and right away made sure I was taking a daily, gluten-free multivitamin. Taking a vitamin is important when you have celiac disease because damage to the intestine can make it difficult or impossible for the body to absorb important nutrients from food.

I quickly realized this would be more than just learning which foods to avoid.

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Life after being diagnosed with celiac disease

At first, the thought of navigating social gatherings or dining out filled me with anxiety. How was I supposed to manage this new lifestyle? But then I thought: If others can do it, why can’t I?

Gradually, I got the hang of living with celiac disease. I learned to read labels, tested gluten-free recipes (which is a big deal for someone who barely cooked before!), and became pretty good at speaking up for my dietary needs in restaurants and social settings. It’s been empowering, even though I still daydream about a slice of gooey pizza every now and then. I follow up with my doctor yearly for blood work, and so far, so good.

My partner has been an incredible support through all of this. At first, it was a challenge for him, too, but now he’s on a gluten-free diet alongside me. The key has been finding new dishes and treats that we both genuinely enjoy, making sticking to this new lifestyle much easier. And honestly? I’ll take how I feel now over how I felt any day when I was eating gluten.

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