Could It Be More Than Celiac? Uncovering Misdiagnosis Mysteries
Celiac disease affects about 1 in 100 people worldwide, but only 30% gets a proper diagnosis. It’s an autoimmune disorder where eating gluten (found in foods like bread, pasta, and cereal) can cause serious damage to the small intestine. You’d think spotting something so serious would happen quickly, right? Wrong. For many, it can take years.
Why? Because celiac disease symptoms overlap with several other conditions, leading to confusion and misdiagnosis. Some people are told they have irritable bowel syndrome (IBS), lactose intolerance, or worse, before discovering it’s actually celiac. Others test negative even though their symptoms scream celiac disease, a frustrating scenario known as a “celiac false negative.”
Let’s find out what’s often confused with celiac disease and why misdiagnosis happens, so you can better understand how to get to the root of your symptoms.
What Can Be Mistaken for Celiac Disease?
1. Non-Celiac Gluten Sensitivity
Non-celiac gluten sensitivity (NCGS) is a top contender for being mistaken for celiac disease. Both share similar symptoms like bloating, abdominal pain, and fatigue. But unlike celiac, NCGS doesn’t harm your small intestine. People with NCGS can usually tolerate small amounts of gluten, whereas celiac patients need to avoid it entirely.
For example, imagine a college student cutting gluten after feeling bloated every time they ate pizza. Their symptoms improved, so they assumed it must be celiac disease. After testing, though, their doctor found no intestinal damage or autoimmune markers, suggesting it was NCGS instead. The treatment? Avoid gluten but without the anxiety over cross-contamination.
2. Wheat Allergy
Wheat allergy is another condition often mixed up with celiac disease. But here’s the big difference: wheat allergy is an immediate allergic reaction, like hives or trouble breathing, right after eating wheat. It’s not an autoimmune response, and it doesn’t involve gluten per se.
Consider a parent who watches their child break out in hives after a sandwich. They might suspect celiac disease at first. But after allergy testing, it turns out the child has wheat allergy, which requires avoidance of wheat products, not all gluten-containing foods (like rye or barley).
3. IBS, IBD, and Other Gut Issues
Celiac is also frequently mistaken for irritable bowel syndrome (IBS). Both cause gas, bloating, and diarrhea, leaving plenty of room for confusion. It’s only after ruling out celiac (via blood tests and biopsies) that IBS might be diagnosed.
Sometimes, Crohn’s disease or ulcerative colitis (types of inflammatory bowel disease, or IBD) are mistaken for celiac, too. These conditions share symptoms like abdominal pain, fatigue, and poor nutrient absorption. Testing is crucial to differentiate them, but the treatments are very different.
Can Celiac Disease Be Mistaken for Cancer?
It’s not common, but yes, celiac disease can sometimes be mistaken for more serious conditions like cancer. For example, unexplained weight loss, anemia, and persistent stomach issues might make a doctor suspect intestinal cancer. The good news? Early testing for celiac, including blood work and biopsies, can help rule this out.
Interestingly, untreated celiac can increase the risk of certain cancers, like non-Hodgkin lymphoma. That’s why sticking to a gluten-free diet isn’t just a preference; it’s a must if you have celiac disease.
The Problem with Negative Celiac Tests
Imagine this scenario. You have all the classic celiac symptoms—diarrhea, fatigue, bloating—but your blood test comes back negative. Frustrating, right? This happens more often than you’d think.
Why? Maybe you started avoiding gluten before testing, which can lower the antibodies doctors look for. Or maybe you fall into the small group of people whose test results don’t reflect their condition. Either way, a small intestine biopsy or genetic testing might give you the answers you need.
One man I know spent years feeling sick and switched to a gluten-free diet based on self-diagnosis. He felt better but tested negative for celiac when he finally saw a doctor. Confused and tired of guessing, he pushed for a biopsy. Sure enough, it confirmed celiac disease.
How to Advocate for Yourself
Being misdiagnosed or wrongly diagnosed with celiac disease can leave you feeling stuck. Some people go gluten-free unnecessarily, while others live with unresolved symptoms, thinking they’ve exhausted their options.
Here’s what you can do if you’re in this situation:
- Ask for comprehensive testing. Blood tests, biopsies, and even genetic testing can help pinpoint what’s going on.
- Track your symptoms. The more information you can provide your doctor, the better.
- Get a second opinion. Don’t hesitate to see another specialist if something feels off.
- Work with a dietitian. Whether it’s celiac, NCGS, or something else, a dietitian can help you manage your food and nutrition needs effectively.
Trust Your Gut: Finding the Right Answers for Your Health
Getting to the bottom of celiac-like symptoms takes patience and persistence. If you’ve been given a diagnosis but your gut tells you it’s not right (literally and figuratively), don’t settle. Proper diagnosis matters—not just so you can feel better, but so you can avoid unnecessary treatments or dietary restrictions.
And hey, don’t beat yourself up during the process. Whether you’re figuring out if gluten is the culprit or navigating a newly discovered diagnosis, it’s okay to feel overwhelmed. Lean on your medical team, ask questions, and take it one step at a time.
You deserve answers, and with a bit of determination, you’ll find them.
