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Condition · Intestine and colon
Coeliac disease
In coeliac disease, the immune system reacts to gluten, a protein in wheat, barley and rye, and damages the lining of the small intestine. It can cause diarrhoea and bloating, but just as often it shows up as anaemia, tiredness or thin bones. The diagnosis needs a blood test and a biopsy while you are still eating wheat. The treatment is a strict gluten-free diet for life.
At a glance
What it is
An immune reaction to gluten that flattens the absorbing surface of the small intestine. It is lifelong.
Common signs
Loose stools, bloating and weight loss; or iron-deficiency anaemia, tiredness, mouth ulcers and bone thinning with no bowel symptoms.
How it is confirmed
A blood test for tissue transglutaminase (tTG) antibodies, then endoscopy with biopsies of the small intestine, both while eating wheat.
How it is treated
A strict gluten-free diet for life, planned with a dietitian, with correction of iron, vitamins and bone health.
What are the signs of coeliac disease?
Bowel symptoms
- Loose stools for weeks or months, sometimes pale and greasy
- Bloating, gas and abdominal discomfort
- Weight loss, or poor growth in a child
- Constipation in some people
Signs outside the bowel
- Iron-deficiency anaemia that does not improve with iron tablets
- Tiredness
- Mouth ulcers that keep returning
- Thin bones or a fracture at a young age
- Tingling in the hands and feet
- An intensely itchy, blistering rash on the elbows, knees or buttocks
- Raised liver enzymes with no other cause
- Difficulty conceiving, or repeated miscarriage
No symptoms at all
Many people are found only because a relative was diagnosed, or during tests for anaemia.
See a doctor promptly if you have
- Diarrhoea with weight loss
- Anaemia that keeps returning
- Black stools, or blood in the stool
- Symptoms that return or worsen on a gluten-free diet you are following carefully
What it is
What is happening inside?
The small intestine is lined with tiny finger-like folds called villi. They give it a large surface for absorbing food. In a person with coeliac disease, gluten triggers the immune system to attack this lining. The villi flatten. Less surface means less absorption of iron, folate, calcium, vitamin D and fat.
Two things are needed for the disease: particular genes (called HLA-DQ2 and DQ8) and gluten in the diet. The genes are common. About a third of people carry them, and only a few of those develop the disease.
How common is it in India?
It depends on where you live and what you eat. A study of more than 23,000 healthy adults across three regions found coeliac antibodies in about 1 in 80 people in northern India, about 1 in 115 in the north-east and about 1 in 1,000 in southern India. The risk genes were equally common in all three regions. What differed was wheat: people in the north ate many times more of it each day.
So coeliac disease is uncommon in people who have eaten a rice-based southern diet all their lives. I think of it more readily in people from northern families, and in anyone who eats wheat daily and has the signs above.
Who should be tested?
- Anyone with the bowel symptoms or the signs outside the bowel listed above
- People with iron-deficiency anaemia that has no other explanation
- Parents, brothers, sisters and children of a person with coeliac disease
- People with type 1 diabetes or autoimmune thyroid disease who have any suggestive symptom
Do not stop wheat before the tests
The blood test and the biopsy both turn normal on a gluten-free diet. If you stop wheat first, the tests can miss the disease, and you are left not knowing whether you need a strict diet for life. Get tested first.
How I find out
Which test answers which question?
tTG-IgA antibody with total IgA
It tells us: Whether the immune system is reacting to gluten. Total IgA is measured alongside, because a few people make very little IgA and their test reads falsely normal.
When I use it: As the first test, while you are eating wheat every day.
Endoscopy with biopsies of the small intestine
It tells us: Whether the villi are flattened. Several small samples are taken from the first part of the small intestine.
When I use it: To confirm the diagnosis in adults before a lifelong diet is started. See upper GI endoscopy.
HLA-DQ2 and DQ8 gene test
It tells us: Whether coeliac disease is possible at all. A negative result makes it very unlikely. A positive result does not diagnose it, because the genes are common.
When I use it: When someone is already off wheat, or when the blood test and biopsy disagree.
Blood count, iron, folate, vitamin B12, vitamin D and a bone density scan
It tells us: What the disease has already cost you in nutrients and bone strength.
When I use it: At diagnosis.
If you have already stopped wheat
A gluten challenge brings the answer back. You eat a measured amount of wheat every day, about two slices of bread or two rotis, for at least two weeks and longer if you can tolerate it. Then the blood test and biopsy are done. In a study of adults with known coeliac disease, two weeks of this was enough to bring back the biopsy changes in most, and the antibodies rose clearly by four weeks.
Treatment
How is coeliac disease treated?
A strict gluten-free diet, for life
- Leave out: wheat in every form (atta, maida, sooji or rava, dalia, vermicelli, bread, biscuits, most bakery food), barley (jau) and rye
- Eat freely: rice, millets such as jowar, bajra and ragi, maize, all dals and besan, potato, sabudana, rajgira, kuttu, vegetables, fruit, milk and curd, eggs, fish and meat
- Oats: only if labelled gluten-free, added later and with follow-up, because ordinary oats are often mixed with wheat during milling
Watch for hidden gluten
- Compounded hing, which is usually blended with wheat flour
- Soy sauce, malted drinks, soup powders and some sauces
- Flour ground at a mill that also grinds wheat
- Shared oil, tawa, toaster or rolling board at home and in restaurants
Replace what is low
Iron, folate, vitamin B12, vitamin D and calcium are corrected. Bone strength is treated if the scan shows thinning.
Follow-up
- A visit with the dietitian at the start and again after a few months
- tTG antibodies at about 6 and 12 months, then yearly. They should fall steadily
- Symptoms usually ease within weeks. The lining takes longer to recover in adults, often a year or two
When surgery is the right answer
Coeliac disease is not treated with surgery.
If symptoms continue on the diet
The commonest reason is gluten that is still getting in without your knowing. A dietitian’s review finds it more often than any test. If the diet is clean, I look for other conditions that travel with coeliac disease: lactose intolerance while the lining heals, bacterial overgrowth, a low output of pancreatic enzymes, microscopic colitis and IBS. A form of coeliac disease that does not respond to a strict diet exists, but it is rare.
Root-cause care
The integrative view: what else I look at
- The quality of the gluten-free diet: packaged gluten-free biscuits and breads are often low in fibre and high in sugar and fat. Indian food makes this easier than it is in the West. Millets, rice, dals and vegetables are gluten-free as they come.
- Other autoimmune conditions: thyroid disease and type 1 diabetes are more common in people with coeliac disease. I check thyroid function.
- Bones: calcium, vitamin D, protein and weight-bearing exercise.
- Living with a strict diet: eating out, weddings, travel and school lunch boxes are where the diet breaks down. A health coach in my practice helps families plan for these.
This work runs alongside the diet. It does not replace it. No tablet or enzyme lets a person with coeliac disease eat gluten.
Recovery
What should I expect?
| When | What happens |
|---|---|
| Before diagnosis | Blood test and biopsy while still eating wheat. |
| First 4 to 8 weeks | Gluten-free diet with a dietitian. Bowel symptoms and energy usually begin to improve. |
| 6 to 12 months | Antibodies fall. Iron and vitamin levels recover. Weight returns. |
| Long term | Yearly review of symptoms, antibodies and nutrition. A repeat biopsy is considered after about two years to confirm that the lining has recovered. |
Questions patients ask me about coeliac disease
Is coeliac disease the same as gluten sensitivity or wheat allergy?
No. Coeliac disease is an autoimmune condition with antibodies and damage to the intestine. Wheat allergy is an immediate allergic reaction. Non-coeliac gluten sensitivity causes symptoms without either. The tests and the strictness of the diet differ. See gluten sensitivity.
I feel better without wheat. Do I still need tests?
Yes, if coeliac disease is a possibility. Many people without coeliac disease feel better off wheat, often because of the fermentable sugars in it. Only testing tells you whether you need a strict lifelong diet, with all that means for your bones, your blood count and your family.
Can I have a little wheat now and then?
Not with coeliac disease. Small amounts keep the lining inflamed even when you feel well. This is the main difference from gluten sensitivity.
Will I grow out of it?
No. Coeliac disease is lifelong. On a gluten-free diet the intestine recovers and you can be entirely well, but the reaction returns if gluten returns.
Should my family be tested?
Yes. Parents, brothers, sisters and children of a person with coeliac disease have a higher risk. A blood test, done while they are eating wheat, is enough to start with.
Are millets and oats allowed?
Jowar, bajra, ragi and the other millets are gluten-free and make good staples. Oats do not contain wheat gluten, but ordinary oats are commonly contaminated with wheat. Use oats only if they are labelled gluten-free, and tell me when you start them.
Sources
This page is written for patients and is based on the guidelines and studies below. It is for education and does not replace a consultation.
- American College of Gastroenterology guideline on coeliac disease. Rubio-Tapia A et al. Am J Gastroenterol. 2023. PubMed 36602836
- Study of coeliac disease in 23,331 adults across northern, north-eastern and southern India. Ramakrishna BS et al. Am J Gastroenterol. 2016. doi:10.1038/ajg.2015.398
- Community study of coeliac disease prevalence in northern India. Makharia GK et al. J Gastroenterol Hepatol. 2011. PubMed 21182543
- Meta-analysis of the worldwide prevalence of coeliac disease. Singh P et al. Clin Gastroenterol Hepatol. 2018. doi:10.1016/j.cgh.2017.06.037
- Study of the gluten challenge in adults with coeliac disease. Leffler D et al. Gut. 2013. doi:10.1136/gutjnl-2012-302196
- Salerno experts’ criteria for non-coeliac gluten sensitivity. Catassi C et al. Nutrients. 2015. PubMed 26096570