Coeliac disease
Coeliac disease is not an allergy to bread and not a fashionable intolerance. It is a lifelong immune reaction to the protein of three cereals, in which the…
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Coeliac disease is not an allergy to bread and not a fashionable intolerance. It is a lifelong immune reaction to the protein of three cereals, in which the body's own defences destroy the lining of the small bowel. The bowel stops absorbing, and people spend years being treated for anaemia, brittle bones or "nerves" without ever suspecting what a bread roll has to do with it. About one person in a hundred has it, and most of them do not know. There is a single treatment: take gluten out for good. But there is one step that must not be taken too early.
What it actually feels like
The textbook picture is about the gut, and it turns up more often in children:
- loose stools, pale and greasy-looking, with a sharp smell: undigested fat is hard to flush away;
- bloating, rumbling, wind and a diffuse ache across the belly;
- stubborn constipation, which against all expectation is no rarer than diarrhoea;
- nausea and vomiting, especially in children after meals.
In adults the gut may say nothing at all, and everything else moves to the front:
- tiredness that gets blamed on work and age, and that usually hides a shortage of iron, vitamin B12 or folate;
- weight that comes off by itself, with no dieting involved;
- an itchy blistering rash on elbows, knees, buttocks and hairline — dermatitis herpetiformis, the skin face of the same disease, which can run with no gut symptoms whatsoever;
- mouth ulcers that will not close, and mottled, darkened enamel in children;
- pins and needles in the feet and hands, unsteadiness on walking;
- bone pain and fractures after trivial knocks;
- trouble conceiving, repeated miscarriage, an erratic cycle;
- in a child, growth and weight that stall, late puberty, listlessness.
Symptoms come and go, so the link with food is rarely spotted. And feeling nothing proves nothing: the bowel is damaged quietly too.
Why ordinary bread turns hostile
Gluten is the collective name for the proteins of wheat, rye and barley, and in most people it simply passes through. In coeliac disease the immune system mistakes one part of it, gliadin, for an intruder and ends up working against the person's own bowel. The inside of the small bowel is carpeted with millions of tiny finger-like villi, and it is they that give it its enormous absorbing surface. Inflammation flattens them, the lining goes smooth, and nutrients travel past uncollected. That is where the anaemia comes from, and the weak bones.
The trigger is only half understood. An inherited background is needed — the HLA-DQ2 and DQ8 gene variants — but on their own they say little: a third of the population carries them and one in a hundred falls ill. Something else sets the process going: past gut infections, the make-up of the gut flora, probably more that has not been pinned down. It can start at any age, including in someone who has eaten bread happily for fifty years.
Diagnosis, and the mistake that ruins it
Nobody is screened wholesale. Testing makes sense with symptoms from the list above, or if a person falls into one of these groups:
- first-degree relatives of someone with coeliac disease — parents, children, brothers and sisters: the risk is around one in ten;
- type 1 diabetes, autoimmune thyroid disease, autoimmune hepatitis;
- Down syndrome, Turner syndrome;
- iron deficiency with no explanation that will not respond to iron;
- osteoporosis or fractures at an age where neither belongs;
- a label of "irritable bowel syndrome" pinned on without any investigation;
- infertility and recurrent miscarriage that nobody has accounted for.
It starts with blood: antibodies to tissue transglutaminase, taken together with total immunoglobulin A, because a congenital shortage of the latter makes the main test come back falsely negative. If antibodies are raised, a gastroenterologist performs an endoscopy and takes samples of the lining. In some children with very high antibody levels biopsy can be skipped; that call belongs to the specialist.
And now the part worth reading this far for. Keep eating gluten until the whole work-up is finished. Drop bread a few weeks before the blood test and the lining begins to heal, antibodies fall, and the result comes back negative in someone who genuinely has the disease. No diagnosis is made, and the symptoms return at the first lapse at the table. Undoing that means eating gluten deliberately for weeks and repeating everything. So "I'll try a while without bread and see if I feel better" is precisely what should not happen before the appointment.
A negative blood test does not always close the matter either: with persistent symptoms a doctor may refer to a specialist anyway. Once the diagnosis is confirmed, the next question is what the disease has already damaged: iron and ferritin, vitamin B12, folate, vitamin D, calcium, thyroid function; where thin bones are suspected a bone density scan is added, and the rash is confirmed by a skin biopsy.
The only treatment there is
It does not come in a tablet. Wheat leaves the kitchen in every disguise — flour, semolina, bulgur, couscous, spelt — and rye and barley go with it. That means goodbye to ordinary bread, pasta, cakes, biscuits, breadcrumb coatings and almost all beer, which is brewed from barley.
Plenty remains, happily: meat, fish, eggs, dairy, vegetables, fruit, pulses, nuts, potatoes, rice, buckwheat, maize, millet, quinoa. A diet built from ordinary food works out cheaper and healthier than one built from industrial gluten-free products, which tend to carry less fibre and more fat and sugar. In the first months a dietitian is worth a great deal — not to hand out bans, but to keep the diet from going thin.
People feel better within a few weeks, though the lining takes longer to repair: in adults, up to a year or two. Until it does, milk is often poorly tolerated; that passes. A yearly review is worth keeping: weight, follow-up antibodies, nutrient levels. If the spleen works less well after years of disease, vaccination against pneumococcus and influenza is discussed.
Where gluten hides
Almost nobody trips over the bread; people trip over the small print. Read the label even where you expect no trap: soy sauce, sauces and gravies thickened with flour, stock cubes, sausages, ready-made burgers, malt extract in breakfast cereal, and some medicines and supplements — ask a pharmacist about those. A "gluten-free" claim means by law no more than twenty milligrams per kilo, and the overwhelming majority tolerate those traces without trouble.
Oats contain no gluten, but in an ordinary mill wheat is nearly always alongside them, so only oats labelled gluten-free will do. Even those are better introduced after a word with the doctor: in a small number of people it is the oat's own protein, avenin, that provokes a reaction.
A shared kitchen is a chapter of its own: one chopping board for everyone, crumbs in the butter and the jam, the family toaster, the water that ordinary pasta was boiled in. A board of your own, your own jars and a separate toaster settle most of it.
What it costs to keep eating gluten
Complications arise in those who do not know their diagnosis, or know it and eat as before:
- obstinate anaemia from lack of iron, vitamin B12 or folate;
- thinning bone all the way to osteoporosis, and fractures at a young age;
- in children, short stature and late puberty that are not always made up afterwards;
- in pregnancy, miscarriage, restricted growth of the baby and low birth weight;
- over time a spleen that works less well, and therefore infections that hit harder.
And there is something rare that is more honest said out loud: coeliac disease left untreated for many years slightly raises the risk of tumours of the small bowel, lymphoma included. The absolute numbers are small, most people will never meet this, and after some years of a strict diet the risk drifts back towards everyone else's. The most durable misconception is that "a little won't hurt": even occasional helpings keep the inflammation going, and the cruel part is that they can be felt as nothing at all.
When waiting is the wrong move
See a doctor without delay if:
- a strict diet had made things better and, months or years later, diarrhoea, pain and weight loss return — most often a hidden source of gluten is found, but the rare refractory form and small bowel tumours begin the same way;
- weight is falling, there are night sweats, a temperature with no cold to explain it, or a lump can be felt in the abdomen;
- there is blood in the stool, or it has turned black and tarry;
- diarrhoea and vomiting will not stop, with marked weakness, muscle cramps and confusion: dehydration with salt loss is uncommon but needs hospital care;
- sudden pain with a hard, board-like abdomen;
- a child stops gaining weight and becomes listless, with swollen legs.
Not an emergency, but not "one day" either: an itchy blistering rash on elbows and knees, along with numbness and unsteady walking, also deserve an appointment.
Online consultation
A remote appointment covers exactly the weakest point — everything that happens before the tests. The doctor goes through the symptoms and the family history, says which investigations make sense in your particular case, and warns you not to drop gluten before the blood is taken. Results already in hand are easy to work through on screen: what a number means, whether a biopsy is needed, who to see next. Once the diagnosis is established, online is a convenient place to discuss returning symptoms, gluten eaten by accident, how to cover deficiencies and how to eat while travelling. What is not done remotely is diagnosing without tests, and anything from the list above belongs in a face-to-face visit.
This material is for information only and does not replace medical advice.
Consult with a doctor about Coeliac disease
Discuss your symptoms and possible next steps with a doctor online.
Online doctors for Coeliac disease
Discuss your symptoms and possible next steps for Coeliac disease with a doctor online.
