Celiac Disease in Black Adults: The Missed Diagnosis Risk

Celiac disease is an autoimmune reaction to gluten, the protein in wheat, barley, and rye. When someone with celiac eats gluten, the immune system attacks the lining of the small intestine, which blocks the body from absorbing iron, calcium, and other nutrients. It is not a wheat allergy and it is not a sensitivity you can manage by cutting back. Celiac disease occurs in Black adults, and the long-running assumption that it is a white-only condition is one of the main reasons Black patients go undiagnosed for years.

For decades, celiac disease was framed as a condition of people of European ancestry. That framing came from prevalence studies. A 2012 national study estimated celiac disease affects about 0.71% of people in the United States, and the largest share of confirmed cases was in non-Hispanic white participants. But that same study found something more important for Black readers: of the people who actually had celiac disease, about 83% did not know it. Celiac is undiagnosed in most people who have it, regardless of race.

When clinicians treat celiac as a white-only disease, they test Black patients for it less often. Lower diagnosis rates then get read as proof the disease is rare in Black communities, which reinforces the assumption that started the cycle. Under-ascertainment, not biology, explains a large part of the gap. Black patients have reported being told outright that they could not have celiac disease because of their race.

The textbook picture of celiac is chronic diarrhea, bloating, gas, and weight loss. Many people never get that picture. Celiac frequently presents outside the gut, and those extra-intestinal signs are easy to chase down separate paths for years. According to the National Institute of Diabetes and Digestive and Kidney Diseases, adults with celiac can have iron-deficiency anemia, fatigue, joint or bone pain, headaches, balance problems, peripheral neuropathy (tingling or numbness in the hands and feet), depression or anxiety, mouth ulcers, an itchy blistering rash called dermatitis herpetiformis, infertility, and repeated miscarriages.

Iron-deficiency anemia is the signal to watch. In a small case series of Black patients with celiac disease at a major center, only two of nine presented with diarrhea, while three presented with iron-deficiency anemia. When the small intestine is damaged, it cannot absorb iron, so anemia that does not respond to oral iron supplements is a red flag for undiagnosed celiac. If you are already working through unexplained anemia, our guide to iron-deficiency anemia in Black women covers the workup that should include a celiac check.

Celiac is also routinely mistaken for irritable bowel syndrome. Both cause bloating, cramping, and changed bowel habits, and a patient can carry an IBS label for years while the real problem is gluten damaging the intestine. If you have been told you have IBS but iron, fatigue, or nutrient problems keep coming back, celiac testing is reasonable to request.

Testing starts with blood. The American College of Gastroenterology recommends a tissue transglutaminase IgA antibody (tTG-IgA) test along with a total IgA level. The total IgA matters because some people make too little IgA, which can make the celiac antibody test read falsely negative. If the blood test is positive, the next step is usually an upper endoscopy, where a gastroenterologist takes several small samples from the duodenum to look for the intestinal damage that confirms celiac disease. Because the damage can be patchy, the guideline calls for four or more biopsy samples.

There is one detail that matters more for Black patients. A 2024 study from a tertiary center in the southeastern United States found that among patients with biopsy-confirmed celiac disease, a large share of Black patients had a tissue transglutaminase IgA result within the normal range, meaning the standard blood test missed the disease even though the biopsy proved it. A negative celiac antibody test does not rule out celiac disease. If your symptoms point to celiac and your blood test is normal, ask whether endoscopy and biopsy are still warranted.

The most common testing mistake is going gluten-free first. Both the blood test and the biopsy depend on the immune reaction that gluten triggers. If you stop eating gluten before you are tested, the antibodies fall and the intestine starts to heal, so the tests can come back normal even when you have celiac disease. Keep eating gluten until your clinician tells you the testing is complete.

The only treatment for celiac disease is a strict gluten-free diet, followed for life. There is no pill. Cutting out wheat, barley, and rye lets the small intestine heal in most people and stops the ongoing damage, and many people feel better within days to weeks. Gluten hides in places people do not expect, including soy sauce, many soups, salad dressings, seasoning blends, and some medications, so working with a dietitian who knows celiac disease helps the diet actually stick. A small group of people have refractory celiac disease, where the intestine stays damaged despite a strict gluten-free diet, and that needs specialist care.

Start with your primary care clinician and ask directly for celiac serology, a tTG-IgA with a total IgA, especially if you have unexplained iron-deficiency anemia. If the result is positive, or if your symptoms are strong and the blood test is normal, you will need a gastroenterologist for endoscopy and biopsy. You can find a Black or Black-serving gastroenterologist in our directory who will take your symptoms seriously and test rather than assume. Bring a short written list of your symptoms and your iron history to the visit, and ask the question plainly: should I be tested for celiac disease before I change my diet?