Staying well and keeping healthy when you have coeliac disease
Coeliac disease (CD) is a lifelong condition and – at least for the foreseeable future – incurable. While the advice in previous articles has been mostly focused on getting you or your child better, you need to be aware of how to best stay that way – for life – and overcome any stumbling blocks along the way.
It’s worth repeating that a strict gluten-free diet (GFD) is the most important strategy for ongoing health and well-being.
Compliance among coeliacs is not always good, and surveys suggest that anywhere between only 45 per cent and 90 per cent stick to the gluten free diet. More at risk of lapses are those who experienced few or only mild symptoms prior to diagnosis.
You should not be reassured by any thoughts of ‘safety in numbers’ from those percentages – all coeliacs who stray run increased risks of associated short-term and long-term health problems, including abdominal symptoms, poor pregnancy outcomes, nutrient deficiencies and reduced bone mineral density – and possibly other autoimmune diseases.
There may be a number of contributory factors to non-compliance:
- Inconvenience – obtaining safe food is more time-consuming, and scanning the sometimes tiny print on food labels can be frustrating.
- Cost – specialist gluten-free (GF) food is often more expensive.
- Unpalatability – you may miss ordinary bread and pasta, for example, and dislike their replacements.
- Social issues – peer pressure, not wishing to appear different or ‘make a fuss’.
- Denial – those with no or few symptoms prior to diagnosis may feel they can ‘get away’ with consuming occasional gluten as they consider themselves healthy.
- Symptom-free lapses – failure to experience any abdominal side-effects with gluten intake may reinforce the idea that occasional cheats are OK.
Do resist any urge to cheat. Understand that temptation is likely to come from many sources, and will always crop up from time to time. Be prepared for situations where temptation may arise, and remember that all foods have a GF version these days, so you don’t need to sacrifice a particular type of food. It’s not the bland taste of gluten you’re missing or craving – just the familiar one of that sweet or savoury something in which it is found.
Despite your best intentions, accidents will happen, and you will probably consume some gluten at some point during your gluten free diet, be it through food mistakenly served to you, through cross-contamination or through personal error. Never punish yourself for this. It happens to all.
In some cases, symptoms may be mild; in others, very severe. The usual symptom is diarrhoea, often starting the day after, and continuing ill health – perhaps headaches, stomach pain, lethargy – for up to a week or longer. Sometimes the symptoms begin extremely quickly after ingestion. It varies.
Don’t make yourself sick if you realize what’s happened – this can be dangerous. The deed is done. Rest, eat plain food, perhaps avoiding dairy products for a while, and drink lots of fluids if you have diarrhoea – and ideally a diarrhoea replacement drink too.
There are some digestive enzymes on the market whose manufacturers claim can help with the digestion of gluten and that some coeliacs take when they’ve inadvertently consumed gluten.
These may help to reduce symptoms caused by accidental exposure, but there is no evidence they work and any effects may only be psychological. These enzymes should never be used as a means by which to cheat on the gluten free diet.
Remember that, just like anyone else, coeliacs are prone to upset tummies for other reasons, such as food poisoning, eating rich and spicy foods, consuming too much alcohol or even eating something new that just didn’t agree with them. If you do feel ‘glutened’, it may not always have been gluten.
The gut can take up to two years to heal, so don’t be surprised if you experience occasional symptoms during the recovery period.
With regard to ongoing symptoms, the most common reason is non-compliance with the gluten free diet, either deliberately or unknowingly. In the latter case, try to examine whether gluten could be sneaking into your diet, perhaps over a meeting with your dietitian:
- Are you reading and re-reading labels carefully to make sure foods are gluten free?
- Have you written a detailed food diary and gone through it with your dietitian to identify possible problems?
- Have you ruled out any cross-contamination possibilities from your kitchen – or other sources?
- Are you consuming a lot of barley malt flavouring or extract?
- Could you be consuming contaminated oats?
- Or could you be one of the few coeliacs sensitive to even gluten free oats?
- Are you following a diet high in prescription products made with Codex wheat starch – to which some coeliacs may be sensitive?
The question of a ‘safe’ level of gluten consumption in coeliacs remains unanswered. Studies suggest that a long-term daily intake of 10–50mg of gluten could trigger damage to the gut lining – 500g of gluten free bread or pasta at 20 p.p.m. would equate to the lowest level (i.e. 10mg). Note, though, that this is the most sensitive end of the scale, that it is unlikely you will consume half a kilogram of gluten free replacement products a day, and most of those foods will contain less than 20 p.p.m. of gluten anyway. It may be more of an issue with ‘very low gluten’ foods, however. Note too that reactions to Codex wheat starch may not be quite what they seem.
Other food intolerances, perhaps temporary ones, may also be an issue in coeliac disease, and may be worth considering if accidental gluten intake has been ruled out. The symptoms are usually digestive-based, and similar to those found in undiagnosed coeliac disease and irritable bowel syndrome.
Lactose is the type of sugar found in fresh milk, and it is present to a lesser extent in all other foods made from milk, such as yoghurts and cheeses. Our usual intake is through cows’ milk products, but the milk of all mammals, including goats and sheep, also contains lactose.
The digestive enzyme that breaks down lactose is called lactase, and this is produced in the tips of the villi that line the gut. Damage to your gut lining caused by coeliac disease may mean that your body’s ability to produce lactase is hampered, and so the lactose you consume remains undigested. Undigested lactose in the gut attracts water and passes rapidly through the system to the large bowel, where bacteria ferment it, forming waste gases. This process is responsible for the main unpleasant symptoms of lactose intolerance, such as bloating, abdominal pain, flatulence and frothy diarrhoea, typically half an hour or more after the consumption of dairy products.
If there is any doubt, a simple test is available from your doctor or dietitian, which measures hydrogen levels in your breath following consumption of milk.
If lactose intolerance is confirmed, you will need to avoid milk and ice cream, and perhaps other dairy products, depending on your sensitivity, which you’ll usually be able to gauge by trial and error. Yoghurts and cheeses are lower in lactose and may be tolerated well. It is better to eat these foods with other foods, rather than on an empty stomach, as they will be better tolerated.
Low-lactose milks and other dairy products are now available on the market, and there are plenty of dairy-free milks and related products too. Alternative sources of calcium must be included in the diet if lactose intolerance is severe enough to warrant a dairy-free or reduced-diary diet. As one of the key allergens, milk must be mentioned on food labelling. Many ‘free-from’ products are dairy-free, but this may not be flagged as prominently as their gluten-free or wheat-free status.
Lactose intolerance caused by coeliac disease is usually temporary, but in some cases may last for a year or more even on the gluten free diet, until the gut heals sufficiently and the ability to produce lactase is restored. You can try to increase or reintroduce lactose-containing foods gradually over time, perhaps under the guidance of your dietitian, and this in itself may help to ‘retrain’ your system to accept lactose again.
Other sugar intolerances
There are other sugar intolerances. These are given considerably less attention in the medical literature and appear to be under-recognized.
Fructose intolerance or malabsorption
Like glucose, fructose is a type of simple sugar. Unlike glucose, though, it is poorly absorbed by the body, and those with digestive problems such as irritable bowel syndrome or coeliac disease may have greater difficulty than others absorbing it. In coeliac disease, this may be caused by damage to the villi. When this happens, the fructose passes through to the colon, where it is fermented. The resulting symptoms are similar to those encountered in lactose intolerance, and again a hydrogen breath test may help to identify the intolerance.
There are several sources of fructose in the diet:
- Many fruits (e.g. apples, grapes, melons, pears) and dried fruit
- Many fruit juices and fruit juice concentrates
- Table sugar (i.e. sucrose – in which fructose is bound with glucose)
- More complex fructose sugars called fructans, such as the prebiotics fructo-oligosaccharides and inulin – found in wheat starch, onion, leek, artichokes and asparagus
- Corn syrup and high-fructose corn syrup
- Honey, treacle, coconut milk and coconut cream.
Malabsorption of polyols (sugar alcohols)
Not alcoholic in the usual sense, the sugar alcohols, or polyols, include sorbitol, maltitol, mannitol, xylitol and isomalt. They are used as sweeteners in the food industry, and they only weakly raise blood sugar levels. This is due to humans’ inability to absorb them efficiently.
Because of this low absorbability, the sugar alcohols may trigger symptoms similar to those that can be triggered by fructose and lactose.
They tend to be used in slimming drinks and diet foods, chewing gum, low-sugar soft drinks and diabetic foods. But they are naturally found in some fruits and their juices, too: for instance, sorbitol is found in apples, pears and some stone fruit (e.g. plums), and xylitol in berries.
The low-FODMAP diet
FODMAP stands for ‘fermentable oligo-, di- and mono-saccharides and polyols’ – which essentially refers to most of the types of sugars mentioned above that may be poorly absorbed, especially by coeliacs, and that may be therefore implicated in ongoing symptoms in some people with coeliac disease. A diet low in FODMAPs may be worth a try in certain circumstances, but you must discuss this with your dietitian and only attempt it under dietetic guidance and support.
Wheat and other intolerances
You already react severely to the gluten in wheat – but a minority of coeliacs may also react in a different way to other parts of wheat, such as the carbohydrate or fibre. On a gluten free diet, the most likely exposure to this is via Codex wheat starch in ‘free-from’ foods. The trace levels of gluten in these products do seem to affect some very sensitive coeliacs, but other coeliacs who feel that they get symptoms from Codex wheat starch may be reacting to the starch itself. This can be very tricky to unpick. It may be worth trying a wheat-free diet for a while – some prescription foods and many supermarket ‘free-from’ foods are wheat-free – but again try it only under the guidance of a dietitian, never alone.
Intolerance to Codex wheat starch may theoretically be related to its fructans content. Other intolerances – to foods such as soya and egg – are possible but less common.
Exclusion or elimination diets
Intolerances to wheat and other natural foods cannot be tested for with the hydrogen breath test as sugar intolerances can be, and there are no reliable tests for them. The only way to diagnose one is through an exclusion diet. This is a diagnostic test diet from which suspect foods are first removed for several weeks. If symptoms persist, it’s either a psychological food aversion or not food-related at all. If symptoms clear, a food intolerance can be diagnosed and the reintroduction phase can begin, where foods are individually and gradually brought back into the diet in order to monitor reactions. The reintroduction of a food followed by the return of symptoms is considered indicative of an intolerance to it.
Many intolerances are identified in this way, but other people reintroduce all foods without problems – a change of diet can sometimes be all that’s needed to clear up symptoms.
Willpower and patience are needed to adhere to the diet, but it is quite effective in diagnosing a problem food. You must never attempt it without the guidance and close supervision of a dietitian, not least because the results can be so difficult to interpret and nutritional advice will be needed.
In practice, your dietitian is unlikely to want to tinker with your diet in this way, at least not soon after diagnosis, and the priority will be to make sure that you are successfully established on a nutritious gluten free diet before looking at other concerns.
Ongoing problems: other possibilities
There are a few other causes of persistent tummy troubles.
Irritable bowel syndrome
Irritable bowel syndrome is common in the general population, and can co-exist with coeliac disease. Often it is linked to stress.
Around 10 per cent of coeliacs who don’t respond to the gluten free diet may have underlying irritable bowel too, and it is possible that the symptoms they were experiencing that led to their coeliac diagnosis may actually have been caused by undiagnosed irritable bowel syndrome, while their coeliac disease was ‘silent’ all along.
Irritable bowel syndrome can be diagnosed only by your doctor. Your doctor or dietitian may advise adjustments to your fibre intake, perhaps reducing your intake of insoluble fibre (e.g. whole grains) and increasing your intake of soluble fibre (e.g. vegetables, oats). Other dietary modifications may help, but what works for one person will not work for another, so advice must be individualized.
Some general tips are to eat at regular intervals and not to skip meals, and to reduce intake of caffeinated, fizzy or alcoholic drinks.
Anti-spasmodic medication may be recommended, and relaxation therapy or hypnotherapy has been shown to help with irritable bowel syndrome.
Small intestinal bacterial overgrowth
Small intestinal bacterial overgrowth (SIBO), or small bowel bacterial overgrowth (SBBO), is a condition in which there is an excess of bacteria in the small intestine, leading to symptoms of diarrhoea, wind, pain and bloating. According to the British Society of Gastroenterology, it is underdiagnosed in the population, and may well occur in some coeliac patients who have ongoing problems despite a gluten free diet.
It can be diagnosed with a breath test, and antibiotics are the usual course of treatment. Taking probiotics may offer some benefits in addition, as may reducing your sugar intake, but do check with your doctor first.
Is your GFD healthy? It’s an important question, one which you should ask yourself honestly. It can be so tempting to comfort eat after a coeliac diagnosis, but your diet needs to be balanced in order to encourage recovery at a time when your gut lining is trying to heal. You need lots of nourishing and nutrient-dense foods. Try to avoid sweet foods, which could lead to problems with sugar absorption, as discussed above.
This is the inability to properly digest food as a result of poor production of digestive enzymes by the pancreas. It may result in poor absorption, and the consequent symptoms. It has been proposed as a not uncommon problem in coeliac disease patients with persistent symptoms. It is more likely if you also have type 1 diabetes. It can be diagnosed via a stool test, and the treatment is enzyme supplementation.
It is possible for people to be misdiagnosed with coeliac disease when they don’t have it, but this is rare these days, owing to advances in diagnostic procedures and awareness.
It’s vital that you accept a lifetime of follow-up care, as research shows that it helps you to stick to a gluten free diet. It also allows you to discuss and hopefully resolve the possible problems discussed above. That said, a lack of local resources may mean that you may not receive the ideal level of aftercare. See your doctor or speak to Coeliac UK if this is a problem in your area or if you are left largely to manage on your own.
Ideally, you should have subsequent appointments with your dietitian or paediatric dietitian every three months in the first year following diagnosis. This is helpful for reviewing your progress and your understanding of the gluten free diet, for untangling any sticking points and for addressing any ongoing nutritional problems. Your dietitian can also help with any struggles to maintain your gluten free diet and ongoing symptoms – perhaps by checking your understanding of food labelling or by ordering further tests.
Children must be closely monitored and examined to ensure that their development and growth progress normally. A dietary assessment by a paediatric dietitian can help to identify nutritional deficiencies and any need for supplements.
Use your GP as an ongoing source of health advice and support – he or she can help with your prescriptions, with arranging or performing further tests and with recommending vaccinations and so on – but may also conduct your annual follow-up and assessment.
Patients obviously want access to their gut specialists, and they are often best placed to answer questions specifically related to gut health concerns. A paediatrician may be involved in the care of your child. Reviews at your gastroenterology clinic after three and six months are recommended.
There are several follow-up tests that you may need.
A full blood count and a check of nutrient levels should ideally be performed every year, and more regularly under particular circumstances.
Coeliac antibody tests (i.e. a tTG test) may be repeated as regularly, to check that the levels of antibodies to tissue transglutaminase have reduced. In children, it is recommended that these tests be performed after six months of a gluten free diet. In practice, children dislike having blood taken, and if the consultant believes recovery is strong after several years, blood tests may not always be performed unless there is a specific concern.
These are very rare in , but still do occur.
Refractory coeliac disease is coeliac disease in which the gut does not heal on a strict gluten free diet. One form can be treated with corticosteroids and the prognosis is good, but the second form is more serious, and lymphoma (a type of cancer) of the intestine usually follows, which has a poor prognosis.
There is a slightly increased chance of other malignancies of the gastrointestinal tract among newly diagnosed patients with coeliac disease, but once established on the gluten free diet for several years, the risk becomes equivalent to that of a non-coeliac. The risk of cancer is much lower than previously thought, and is very small, especially when adhering to a strict glutn free diet.
DEXA bone scan
Those with abnormal bone density should be reassessed every three years. Children are unlikely to require a DEXA scan.
Endoscopy and biopsy
When there are continued symptoms and other possibilities have been ruled out, a repeat biopsy may be advised in order to check whether there has been improvement in the health of the mucosa. Another case may be made for a repeat biopsy if the initial diagnosis was not 100 per cent secure. You might want one yourself, to confirm that the effort of the strict gluten free diet you are undertaking is reaping rewards in gut health.
There is some disagreement over the value of a repeat biopsy, so this will depend very much on your personal circumstances and the view of your consultant.
In cases where the reintroduction of gluten free oats into the diet following improvement results in the return of symptoms, the British Society of Gastroenterology advises that it may be worth considering a repeat biopsy to examine the villi.
In children diagnosed before the age of two, a gluten challenge followed by a biopsy may be recommended at some point, typically around the age of six or seven years, to confirm a questionable initial diagnosis. In a gluten challenge, 10 grams of gluten must be reintroduced into the diet every day for at least six weeks prior to the biopsy.
Liver or thyroid function blood tests may be appropriate.