Celiac disease affects roughly 1 in 100 people worldwide, and yet the Celiac Disease Foundation reports an average delay of 6 to 10 years between the first symptoms and an accurate diagnosis. A big part of the reason is that the condition has more than 200 recognized symptoms, and many of them look like something else entirely.
An older review indexed in the NIH's PMC library makes the same point in clinical terms. Its authors, Wolfgang Holtmeier and Wolfgang F. Caspary, note that celiac disease can range from silent to overt, and that severe damage to the small bowel can be present without any digestive complaints at all.
That is why the list below spans both the gut and the rest of the body. If several of these feel familiar, the last section explains the simple screening test that can put an end to years of guesswork.
The digestive signs most people know
The Celiac Disease Foundation lists the classic adult presentation as abdominal pain, bloating and gas, diarrhea, constipation and nausea. These overlap heavily with irritable bowel syndrome, which is one reason a celiac diagnosis is often missed for years.
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1. Chronic bloating and gas. Ongoing, gluten-linked bloating is one of the most common adult symptoms, and it is easy to write off as a food sensitivity or IBS.
2. Diarrhea or constipation that will not settle. Either pattern can appear, sometimes alternating, and both can flare after meals that contain wheat, rye or barley.
3. Unintended weight loss. Because the small intestine is inflamed, nutrients are not absorbed properly. Adults may drop weight without changing their diet.
The signs that live outside the gut
The National Institute of Diabetes and Digestive and Kidney Diseases notes that some people with celiac disease have symptoms that affect other parts of the body, including fatigue, joint or bone pain, mental health issues and nervous system problems.
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4. Chronic fatigue. A relentless, poorly explained tiredness is one of the most reported non-digestive complaints, often tied to iron or B-vitamin loss.
5. Iron-deficiency anemia. Unexplained anemia that does not resolve with supplements is a well-recognized celiac clue and is on the Celiac Disease Foundation's adult symptom list.
6. Brain fog, depression or anxiety. Cognitive impairment and mood symptoms are on the same adult symptom list, and they may be the first thing a person notices.
7. Peripheral neuropathy. Numbness, tingling or burning in the hands and feet can be a celiac sign, and the NIH-indexed review flags it alongside vitamin B12 and B1 deficiency in untreated disease. That review also lists neurological problems such as ataxia and migraine among the atypical presentations.
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8. Bone pain or early osteoporosis. Poor absorption of calcium and vitamin D can weaken bone over time. Joint pain, osteoporosis and osteomalacia all appear on the adult symptom list.
An itchy, blistering rash called dermatitis herpetiformis is another classic sign. According to NIDDK, it appears in 10 to 20 percent of adults with untreated celiac disease.
What to do if this list looks familiar
The screening test is a simple blood draw. The Celiac Disease Foundation states that the best way to test for celiac disease is with the tissue transglutaminase IgA antibody, or tTG-IgA, along with a total IgA to confirm the test can be interpreted. The foundation reports the tTG-IgA is positive in about 93 percent of patients with celiac disease who are on a gluten-containing diet.
One warning matters more than any other. The Celiac Disease Foundation is explicit that you must be on a gluten-containing diet for antibody testing to be accurate. Cutting out bread and pasta before the blood draw can produce a falsely normal result and push a diagnosis further down the road.
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If several of these symptoms describe you, keep eating your normal diet and ask your doctor about a celiac antibody panel.
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