Diagnosed with IBS but Not Getting Better? Why Celiac Disease Gets Missed in India

When the diagnosis does not quite fit

A 42-year-old woman in Pune has been told she has irritable bowel syndrome (IBS) for three years. She avoids spicy food. She takes antispasmodic tablets. She manages her stress. But the bloating returns every week. The loose stools have not stopped. She is tired in a way that sleep does not fix.

Her doctor is experienced and well-meaning. IBS is a real condition, her symptoms match it on paper. But something has not been ruled out. A single, inexpensive blood test might change everything. She is not unusual. Across India, thousands of patients live with a gut disorder that keeps resisting treatment because the wrong condition is being managed. The gap is not a failure of care. It is a gap in the diagnostic process, one that evidence-based guidelines now ask doctors to close.

IBS and celiac disease: an overlap that guidelines now take seriously

IBS is defined by its symptoms, bloating, cramping, diarrhoea, or constipation, with no clear structural cause found on routine investigation. There is no test that confirms IBS directly. It is a diagnosis made after other conditions have been excluded.

Celiac disease is different. It is an immune condition. When a person with celiac eats gluten, a protein found in wheat, barley, and rye, their immune system responds by attacking the lining of the small intestine. Over time, this causes intestinal damage (known medically as villous atrophy), which reduces the gut's ability to absorb nutrients. The problem is that both conditions look almost identical from the outside: bloating, loose stools, abdominal pain, fatigue. Because the symptom overlap is so complete, celiac disease is routinely mistaken for IBS, sometimes for years.

The Indian Neurogastroenterology and Motility Association (INMA) has updated its clinical guidelines to address this directly. INMA now states that celiac disease and inflammatory bowel disease (IBD) should be actively ruled out before an IBS diagnosis is confirmed. This is a formal, guideline-level recommendation, not a suggestion.

The scale of the problem in India is significant. Studies from AIIMS and other Indian centres estimate that celiac disease affects roughly 1 in every 100 people in India, a prevalence comparable to global estimates. Wheat is a dietary staple across India, which means daily gluten exposure is nearly universal. This combination, high prevalence and near-universal exposure, makes India one of the countries with the highest burden of undiagnosed celiac disease in the world.

The standard first test is a specific blood test called tTG-IgA (tissue transglutaminase IgA antibody). It is widely available at diagnostic labs across India and typically costs between Rs. 500 and Rs. 1,500. For a condition this common, it is ordered surprisingly rarely.

What untreated celiac disease does over time

Untreated celiac disease does not just cause gut symptoms. Over months and years, the gut lining damage leads to poor absorption of iron and calcium, raising the risk of anaemia and osteoporosis (bone thinning). Some patients develop nerve problems (peripheral neuropathy) or a distinctive skin rash (dermatitis herpetiformis). Children with undiagnosed celiac can experience growth delays.

Celiac disease also clusters with other autoimmune conditions. If you have type 1 diabetes, thyroid disease (Hashimoto's or Graves'), or lupus, your risk of also having celiac disease is meaningfully higher than in the general population. The lupus diagnostic gap in India shares the same structural problem, rare autoimmune conditions that require specialist-level testing rarely get ordered in primary care.

Other conditions worth ruling out

Celiac is not the only condition worth excluding before confirming IBS. Several others share the same symptom profile and each requires a different approach:

• check_circleInflammatory bowel disease (IBD), Crohn's disease and ulcerative colitis. A stool test called fecal calprotectin is a simple first screen.
• check_circleSmall intestinal bacterial overgrowth (SIBO), excess bacteria in the small intestine, detectable with a breath test.
• check_circleLactose intolerance, an inability to digest the sugar in milk, which causes very similar gut symptoms.
• check_circleBile acid malabsorption, a cause of chronic diarrhoea that is frequently overlooked.
• check_circleMicroscopic colitis, inflammation visible only on biopsy, not on routine colonoscopy.

Each of these conditions is treatable. Each requires a different approach. None of them can be managed correctly if they are labelled as IBS.

Questions worth asking at your next appointment

If you have been told you have IBS and you are not improving, these are reasonable questions to raise with your doctor. You do not need a medical background to ask them:

• check_circleHas celiac disease been ruled out with a blood test, specifically the tTG-IgA test?
• check_circleHas inflammatory bowel disease been checked, for example with a stool test for fecal calprotectin?
• check_circleDo I have any autoimmune conditions, type 1 diabetes, thyroid disease, or lupus, that would raise my risk of celiac?
• check_circleCould this be SIBO, lactose intolerance, or bile acid malabsorption?

These are the exact diagnostic steps that INMA guidelines now recommend before a final IBS diagnosis is confirmed. If your doctor has already tested for these, ask what the results showed. If these tests have not been done, a specialist review can help clarify the next step. Understanding what a gastroenterology specialist review involves, including what records to send and what questions get answered, can help you prepare for that conversation.

How a U.S. specialist reviews a case like this

Tidbit Health connects patients in India with board-certified U.S. gastroenterologists who work at institutions such as Cleveland Clinic, Mount Sinai, Stanford Medicine, Johns Hopkins, and others. When a patient submits records for a second opinion on a long-standing IBS diagnosis that is not improving, here is what the reviewing specialist evaluates:

• check_circleWhether the original diagnostic workup followed current clinical guidelines, including whether celiac disease and IBD were actively ruled out.
• check_circleWhether the tTG-IgA blood test was ordered and interpreted correctly.
• check_circleWhether the pattern of symptoms, bloodwork, and family history points toward a higher-probability diagnosis.
• check_circleWhether additional testing, such as endoscopy with biopsy, stool studies, or breath tests for SIBO, is warranted.
• check_circleWhether current medications and dietary advice are matched to the most likely underlying condition.

The review is written and delivered within 14 days. It does not replace your relationship with your doctor in India. It gives you and your doctor an independent, evidence-based perspective, the kind that can open a diagnostic door that has been closed for years. This is an educational medical review, not a diagnosis or a treatment plan.

A second look is not a second-guess

If your gut symptoms have not improved after months or years of IBS treatment, you are not being difficult by asking more questions. You are following the evidence. Celiac disease is underdiagnosed but testable with a single blood test. INMA guidelines now formally ask doctors to rule it out before confirming IBS. And yet, the gap between guideline and practice remains wide for many patients across India.

A specialist review does not require travel or a referral. It requires your records, a summary of your history, your existing test results, and a list of your current medications. This article is for educational purposes only. It does not constitute a medical diagnosis or treatment recommendation. It does not replace an in-person physician relationship. If you are experiencing a medical emergency, call your local emergency services immediately.