Here’s how celiac disease typically goes undiagnosed for years: the person has GI symptoms that come and go, gets told it might be IBS or stress, avoids certain foods and feels better, assumes they’re just “sensitive,” and never gets properly evaluated. Meanwhile, their small intestine is experiencing ongoing autoimmune damage — and accumulating consequences they don’t yet know about.
Celiac disease affects roughly 1 in 100 people worldwide, yet studies suggest that up to 80 percent of people who have it haven’t been diagnosed.
What Celiac Disease Actually Is
Celiac disease is an autoimmune condition — not a food allergy or a sensitivity, but an immune-mediated response to gluten, the protein found in wheat, barley, and rye. When someone with celiac disease ingests gluten, their immune system attacks the lining of the small intestine — specifically the villi, the small finger-like projections responsible for absorbing nutrients.
Over time, repeated immune attacks damage and flatten these villi. The result is a reduced absorptive surface area in the small intestine, leading to malabsorption of critical nutrients: iron, calcium, folate, B12, fat-soluble vitamins (A, D, E, and K), and others.
Celiac disease is not the same as non-celiac gluten sensitivity (NCGS). Celiac is an autoimmune condition that damages the small intestine; NCGS is real but doesn’t involve that damage. The distinction matters for diagnosis and understanding long-term risk.
The Symptoms: Why It Gets Missed
Adult celiac disease frequently presents with “atypical” symptoms: iron deficiency anemia that doesn’t respond to iron supplementation; persistent fatigue and brain fog from multiple nutritional deficiencies; bone pain and osteoporosis from calcium and vitamin D malabsorption; dermatitis herpetiformis (an intensely itchy blistering rash on elbows, knees, and buttocks); infertility and repeated pregnancy loss; peripheral neuropathy (tingling or numbness in extremities); and elevated liver enzymes without clear explanation.
And yes, classic GI symptoms — diarrhea, bloating, cramping, loose stools — are also common. They’re just not the only presentation, and they overlap considerably with IBS.
The Problem with Self-Diagnosing Gluten Sensitivity
Many people try a gluten-free diet on their own and feel better, then conclude they have a gluten problem. This creates a diagnostic problem: if you’re already gluten-free when tested, your celiac antibodies may be falsely negative, and your intestinal biopsy may appear normal — even if you do have celiac disease.
The tests for celiac disease require active gluten consumption to be accurate. Self-managing on a gluten-free diet before being tested can delay accurate diagnosis by months or years.
How Celiac Disease Is Diagnosed
Blood tests are the starting point. The key test is the tissue transglutaminase IgA antibody (tTG-IgA), which has high sensitivity and specificity for celiac disease in people eating a normal gluten-containing diet. Total IgA is measured at the same time because IgA deficiency can cause a false-negative tTG-IgA.
Upper endoscopy (EGD) with biopsy is the gold standard. During the procedure, the gastroenterologist takes multiple biopsy samples from the duodenum. Under the microscope, pathologists look for villous atrophy, crypt hyperplasia, and increased intraepithelial lymphocytes — severity graded on the Marsh classification system.
Genetic testing for HLA-DQ2 and HLA-DQ8 genes can be useful in specific situations, particularly to exclude celiac disease in someone who has already started a gluten-free diet. About 95 percent of people with celiac carry one of these genes; absence of both makes celiac disease extremely unlikely.
The Long-Term Risks of Untreated Celiac
Untreated celiac disease carries real long-term risks: osteoporosis and fracture risk; certain small bowel lymphomas and other GI malignancies (substantially lower with adherent gluten-free diet); worsening neurological symptoms from ongoing B12 and folate deficiency; and refractory celiac disease requiring specialist management.
Managing Celiac Disease
There is currently no medication that treats celiac disease. The treatment is a strict, lifelong gluten-free diet — eliminating all sources of wheat, barley, and rye, including hidden sources (soy sauce, malt vinegar, many processed foods, cross-contaminated products). Even small amounts of gluten can trigger an immune response and cause intestinal damage. Your gastroenterologist will typically repeat blood tests and, in some cases, a follow-up biopsy after 12 to 24 months on a strict gluten-free diet. First-degree relatives should be screened as well.
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