Coeliac Disease - Gluten-free Diet - Eating and Dining

Eating and dining on a gluten-free diet when you have coeliac disease.

In this previous article you can read about the food labelling and shopping when on a gluten free diet:

Coeliac disease - gluten free diet - food labelling and shopping - includes table of safe and unsafe foods

Now comes the practice – actually putting that knowledge of safe foods to work on your eating and dining lifestyle and habits. And there’s one person who can help you in this regard more than anyone else.

Your dietitian

When you are diagnosed with coeliac disease (CD) you should be referred to a registered dietitian – a trained and qualified professional who can help to translate the science of nutrition into personalized practical dietary advice and guidance. Dietitians are understanding and supportive, and many specialize in restricted diets or food sensitivities. A child with CD will see a paediatric dietitian.

It is important you see your dietitian regularly and build up a strong relationship because evidence shows that those regularly in touch with their dietitians stick more rigidly and healthily to the GFD in the long term and have more satisfactory health outcomes.

Your first appointment

In the days leading up to your first appointment, keep a one-week food diary of everything you or your child eats and drinks, and when. Your dietitian will want to know about your diet in order to help best plan replacement foods and meals that are nutritionally adequate, and a diary will give a more accurate reflection as your memory can be unreliable.

Take a list of questions with you. Take notepaper and don’t be embarrassed to write down answers. Your dietitian will give you lots of information, but you will not remember it all, although he or she will supply you with leaflets.

During the appointment your dietitian will go through a number of key issues with you:

what gluten and CD are and how both affect the body;
gluten-containing foods, safe foods, food labelling, food shopping and the implications of the GFD;
gluten-free (GF) products available on prescription (see below), the companies that produce them, and perhaps some samples or vouchers;
aspects of health – weight, symptoms, any improvements or problems since diagnosis, exercise, smoking, alcohol intake, etc;
any dietary restrictions – vegetarian, co-existing food allergies; and
cooking and eating out.

One of your dietitian’s key aims will be to impress upon you the value of the GFD and how quickly you will start to feel better once you exclude gluten. Yes, there may be ups and downs, but the overall trend over the months to come will be of health improvement, possibly starting within days, as your gut mucosa begins its road to recovery and becomes more efficient at absorbing nutrients. Digestive symptoms should ease, as should any tiredness and depression, for instance.

A common concern at this early stage is that you will need a radical overhaul of your diet. Again, a dietitian can explain that this will not need to be the case, that lots of foods are naturally free from gluten, and that the availability of palatable replacement products will mean that your staple meals need not alter drastically – GF pasta can replace wheat pasta; GF breads can replace ordinary loaves.

And, of course, many of these will be available on prescription.

Prescription food

Anyone diagnosed with CD in the UK is entitled to a limited number of certain GF products on prescription, and a dietitian can offer advice in this regard. Your dietitian may stress that it is important to take advantage of this entitlement, as research shows that compliance with the GFD is helped by access to prescription foods, and he or she may point out that, quite often, prescription products are healthier and lower in fat or sugar than their supermarket ‘free-from’ counterparts.

In Ireland, some prescription items are available to those with medical cards, although others can claim tax reliefs.

Available products

Products that are available on prescription include breads, bread flour, cake mixes, baking aids, crackers, pizza bases, pasta and plain biscuits. There are various brands to choose from, with different qualities for different tastes, and the list changes occasionally, with new products added and others removed. The Food and Drink Directory itemizes available products, and Coeliac UK’s website has a downloadable list and can alert you to updates. The list of products is approved by an independent body, the Advisory Committee on Borderline Substances (ACBS), and it is from this list that your doctor can usually prescribe.

In trying to court new and potentially lifelong consumers, many of the key suppliers of ‘free-from’ and prescribable foods will send you ‘welcome packs’, samples or vouchers of products to try.

There are guidelines for the quantities that can be prescribed: in the case of your child this is based on his or her age, and in your case it is based on age, sex and level of activity and, if you’re a woman, on whether or not you’re pregnant or breastfeeding. The recommendations are given as monthly ‘units’, with children being entitled to anywhere between ten and 18 units, and adults between 12 and 20 units. One unit is equivalent to 250g pasta, 400g bread, two pizza bases or 200g biscuits or crackers, for example.

You can usually, within reason, use your allocation as you wish, although a doctor will not allow you an unhealthy balance of many units on items such as biscuits. Take your dietitian’s advice when discussing your initial prescription: he or she may recommend, for instance, products with a higher calcium content if you are calcium-deficient, or foods that can be frozen, or advise against heavy ordering of products with short shelf-lives, all depending on your personal circumstances. Your dietitian can also make a case for you if he or she feels your unit allowance should be increased for any reason.

There may, however, be some restrictions, depending on the area of the country in which you live. The budgets for prescriptions are managed by the local Primary Care Trust (PCT) and cutbacks may influence what your GP may prescribe. Any local health initiatives may reduce the availability of biscuits and cake mixes too. Contact Coeliac UK if you think your prescription has been restricted unfairly.

Codex wheat starch

Ordinary wheat starch is not GF as it has enough residual gluten to cause problem for coeliacs, but there is a special type of wheat starch that is permitted for use in foods labelled ‘gluten free’ or ‘very low gluten’, and it is almost exclusively encountered in some prescription foods.

The starch is commonly called Codex wheat starch – or just ‘Codex’ among coeliacs – a specially rinsed starch whose trace gluten level complies with Codex standards, making it suitable for use in products such as breads and flour mixes that comply to these standards. Most, but not all, coeliacs can tolerate the trace levels in these foods.

Manufacturers like to use it as it can offer better taste and baking qualities and a lighter texture. It will always be specified on the label.

Some coeliacs are concerned by the methods employed to ‘deglutenize’ the wheat starch, but the only chemical involved in the (repeated) rinsing process is water.

Getting started

Your doctor will write and sign your prescription, based on the products you have selected within your entitlements, and you can take this to your community pharmacist who will order your food and dispense it to you.

The early months will be in some ways experimental. You can tweak your prescription accordingly, again with the help of your dietitian. Repeat prescriptions are possible, but it’s better to wait until you’ve worked out a selection of foods and a routine that works for you.

There are pharmacy-led local prescription schemes in some parts of the UK.

Cost

Prescriptions are free for children and for some adults in the UK, depending for instance on age, income or geographical location. Pregnant women and those with some long-term health conditions do not pay either.

If you do pay, it may be cost-effective to opt for a pre-payment certificate (PPC), available for either three months or 12 months, which offers unlimited prescriptions. This helps if you pay for other prescriptions as well as your GF entitlements or if you order a variety of product types on prescription, as usually one charge is applied to each ‘line’.

Controversies and issues

Most, but not all, coeliacs obtain food on prescription, and it is a personal decision whether you choose to do so. Some people don’t like the medical connotations of ‘illness’ that a prescription implies, while others choose mostly to abandon a diet of processed food products and cook their own meals exclusively from scratch with ingredients naturally free from gluten.

The use of Codex wheat starch in prescribed foods is criticized by some coeliacs who feel that wheat should be excluded completely from foods labelled ‘gluten-free’. Others feel that they react to Codex, and indeed some more sensitive coeliacs do appear to have to avoid it. These may include children, who may find the levels less tolerable.

Those who have to follow a wheat-free or dairy-free diet in addition to a GFD may be unfairly limited in their choice. Some feel that biscuits, and even some of the more calorific, higher-fat breads now available on prescription, should not be prescribable from a health perspective. These issues are vigorously debated and discussed within the coeliac community, and the situation is changeable.

If you do settle into a repeat prescription for GF foods, you may encounter such problems as a sudden change to your prescription in the event of cutbacks, or the lack of availability of some products, perhaps depending on your pharmacist. It is worth calling Coeliac UK if you feel unfairly treated, as they may be able to take up your case.

Oats in the diet

Uncontaminated GF oats are considered safe for the majority of coeliacs, including children. But it is currently impossible to predict who the few who may react may be, and so the recommendation is that following a diagnosis, you should refrain from consuming oats for around 12 months, until symptoms have improved and blood tests normalized. Speak to your dietitian before introducing them.

Cooking

There is certainly more to coeliac-friendly cookery than merely boiling some rice for your stir-fried vegetables or popping a baked potato into the oven to go with your beans. But before you don your apron and get cooking more adventurously, there are considerations to take care of first.

The gluten-free kitchen

If you live alone (or perhaps exclusively with other coeliacs) then you will be able to benefit from ‘deglutenizing’ your kitchen. Previous baking with ordinary flour might mean there’s suspicious white powder lurking in corners, and perhaps breadcrumbs too, so a thorough washing of all kitchen equipment and surfaces is advised.

Toasters can be tough to clean so you will need to replace yours. As for food, give any gluten-containing products to non-coeliacs. Think carefully about where breadcrumbs may be hiding: honeys, marmalades, margarines and other spreads may have crumbs in them if you’ve ‘double dipped’ your knife after first applying it to the bread or toast.

The non-gluten-free kitchen

Cross-contamination is a major issue if you are either cooking for non-coeliac family members or sharing with others in a non-GF household.

You will have to be more scrupulous with cleaning, and communicate this importance to the rest of the household. If you can, foster a ‘tidying up as you go’ approach, rather than allowing unwashed pots and pans, half-eaten bits of food and assorted ingredients to build up, only for gluten to get picked up on fingers and spread further. It will be much easier to keep on top of matters if the kitchen is tidy.

You won’t need separate kitchen utensils or other equipment, for the most part. You may need an allocated toaster (although you can use toaster bags), a slicing or chopping board, a bread maker and a bread bin. Reserved cake and biscuit tins are essential. It’s wise to have different drainers for different pastas, as drainers can be tricky to clean properly. You’ll also need a no-gluten item of any equipment that isn’t washed but, say, just ‘wiped’ clean – such as a wok. Dishes, bowls and cutlery, provided they are washed properly, will be safe.

That said, some coeliacs do like to have total separation of GF and non-GF, virtually splitting the kitchen into two. Certain products that may be easily mistaken for one another, such as plain biscuits, or that may easily cross-contaminate, such as flours, should be stored separ-ately. Use of prominent labelling or a ‘colour-coding’ system – perhaps red for non-GF and green for GF – can help here.

It can also help with food: labels on leftovers or for freezer items can avoid confusion. Separate margarines and other spreads are recommended. The alternative is a rule where nobody ‘double dips’ a knife – you included. It may help to go for ‘squeezable’ options – such as plastic bottles of honey – which can’t be contaminated.

Care must be taken when preparing gluten-containing and coeliac-friendly meals at the same time: avoid using the same spoon to stir two different pans of boiling pastas, for example. It’s wise to maintain clear separation during cooking. If you have the time, it’s better to prepare the coeliac meal first. Regular hand-washing, taking care under nails and jewellery, is paramount throughout.

A lot of the time, once you’ve taken basic common-sense precautions, you may find that it’s best to devise the rules as you go along, learning from trial and error. It may be frustrating at first, but you will get there.

Should the household give up gluten?

There are advantages and disadvantages to this.

The advantages include easier, quicker and cheaper shopping and less cooking (with no risk of cross-contamination).

The disadvantages are that the GFD is ‘imposed’ on one or more non-coeliac family members, who may resent it. In the case of children, this could cause problems. Many feel that coeliac children should not be shielded from the realities of a gluten-containing world in this way and that they should learn how to deal with it at home.

A compromise could be best: go GF where you can, make meal-times mostly GF, encourage non-coeliac family members to take an interest in GF cooking and take care with cross-contamination issues. Most sweet bakery products are equally good in GF forms.

It is ordinary bread and pasta that non-coeliacs are unlikely to feel they can sacrifice, and these should be accommodated with the usual precautions. Self-contained gluten snacks – such as cereal snack bars – are fine if stored separately and clearly marked for consumption only by non-coeliacs.

Meals

Avoid if you can thinking of and focusing on the limitations of the GFD – all the foods that you can’t cook with and eat. Try to concentrate on what you can eat instead – and look upon it as an opportunity to broaden your culinary palate. Truthfully, having to replace gluten staples with GF varieties and getting to experiment with grains naturally free from gluten can open your eyes to a new world of food. Approach it with a sense of adventure, think creatively, and don’t be afraid to make mistakes. You will learn from them. And get better.

Favourite recipes

We all have favourite meals, and there are few recipes that cannot be adapted for coeliacs. For instance, although rice or chickpea spaghetti bolognese or bread and butter pudding made with GF bread may not taste exactly the same as the regular recipes, and your tastebuds will take a few weeks to adapt, try not to think of these adapted meals as ‘not as good as’ they were – just ‘different from’. Rest assured that GF versions for most ingredients now exist, so you can find replacements for anything you need.

Great grains

It is important on a GFD to replace the grains you can’t eat – wheat, rye, barley – with the cereals or cereal-like foods you can. You’re already likely to be eating rice and corn, and will probably be familiar with polenta or cornmeal, but there are others, and each is nutritious and tasty in different ways.

Amaranth – a tiny grain, a key crop to the Aztecs. It has a nutty taste, is easily digested and high in proteins, calcium, magnesium and iron, making it ideal for vegetarians and vegans. Cooks in about 15 minutes and should not be overcooked as it quickly turns gooey.
Buckwheat – despite the name, it is not a wheat, and is definitely free from gluten. Popular in Japan, pure buckwheat noodles (soba) make a good alternative to rice noodles and a good substitute for spaghetti. The seeds come in raw form (green) and roasted (reddish-brown). It is commonly used in parts of Russia and China, has a sweet taste, and can be used in casseroles or as a substitute for couscous.
Millet – slightly bland cereal of tiny spherical grains, a staple in Africa. It should be cracked by sautéing before cooking, so that it can absorb flavours. Millet flakes can be used as an alternative to oat porridge. It is highly digestible.
Quinoa – an ancient South American crop, quinoa is a high-protein, complete food, which is nutty, and cooks in 15 minutes, turning into tiny translucent ‘beads’. Use instead of rice or couscous.
Teff – native to eastern Africa, and popular in Ethiopia, teff is a tiny, mild and nutty grain, which can be used in soups and stews, as a substitute for bulgur wheat or as an alternative to porridge. It is a nutritious source of iron, calcium, magnesium and zinc.

New recipes

This isn’t a cookbook website, and it’s beyond its scope currently to include recipes. (Though recipes may be added in time). Over time you will want to try new meals. You can find ideas from a number of sources:

existing cookbooks, from which recipes can be adapted;
specialist coeliac, GF or ‘allergy-friendly’ cookbooks, of which there are an increasing number;
Coeliac UK’s website and magazine, Crossed Grain;
FoodsMatter.com – a resource devoted to people with food sensitivities;
coeliac (or celiac) and GF blogs – there are many of these, run by ‘foodie’ coeliacs; and
coeliac chat forums, support groups, etc.

Baking

You don’t have to bake. It can be tough to get right, requiring patience and practice. Gluten imparts elasticity and doughiness and ‘bind’ to regular bread – making it light, airy and cohesive. Without it baked products can turn out dense and friable.

Gluten-free breads are so much tastier than they used to be. Ordinary bakers are branching out into baking for coeliacs, and quality is likely to improve further with increased competition and developments in molecular science. The standard of some smaller speciality producers is exceptional.

If you do want to bake, consider ready-made bread or flour mixes, many of which are available on prescription, and just require you to add some staple ingredients.

Flours naturally free from gluten

There are many flours that are naturally free from gluten, each with unique characteristics, and you will come to have your own favourites. Here are a dozen, with some suggested uses, although most are more versatile.

Arrowroot – good for thickening both savoury and sweet dishes
Buckwheat – for pancakes and crepes, and noodles
Chickpea or gram – for savoury Indian and Asian dishes and flatbreads
Chestnut – for sweet baking (cakes, biscuits)
Cornflour – a thickener, for battering, as meat coating; corn pasta
Mesquite – for sweet recipes or flatbreads
Potato – a savoury thickener (for soups, sauces); for pancakes and waffles
Rice – in all baking and as a thickener; to make rice noodles
Sorghum – for Indian breads and sweet bakery; coating for fried foods
Soy – for egg-free baking; pancake mixes
Tapioca – for sweet and chewy breads and desserts; for thickening sauces
Teff – for savoury breads and sweet cakes.

The bolder will want to be more creative and experimental, perhaps invest in a bread maker, and look at experimenting with various flours. A key ingredient in GF baking is a vegetarian starch called xanthan gum, used to replace the characteristic elasticity of gluten. GF baking powder is widely available.

Good results from baking cakes and biscuits is easier – and fun …

Eating out

You can’t always eat food prepared in your newly safe GF kitchen. There will come a time when you will want or need to consume food prepared by people you don’t know. Dining out is one of life’s great pleasures, and you shouldn’t deny it to yourself. For many, picking up a quick bite for lunch is a normal part of their working day, and business dinners and family social events are regular events for lots of us.

That said, mistakes are more likely when you’re away from home, so it’s not something you can treat lightly or be overconfident about. It is vital to understand what you can and cannot eat – it’s no good expecting others to if you don’t.

Restaurants

Clearly this presents a challenge and a risk, so pre-planning is vital. That said, more chefs and establishments are aware of coeliac disease and understand that it is not a fad. You may even find some dishes labelled ‘gluten-free’ – remember that labelling rules also apply to these foods from 2012.

Before you dine out

Ask for recommendations. Fellow, long-standing coeliacs will know of good places, and a local coeliac group will be able to make suggestions.
Check for a website. Most restaurants and restaurant chains have a website, with their menus online, and may have reserved areas for those on special diets.
Phone ahead. Speak with the head waiter or chef. Try in mid-afternoon during a quiet period. Ask whether those on a gluten-free diet can be catered for, and what may be available.
Give examples. Explain which kinds of meals are naturally free from gluten or easily adapted to a GFD, such as rice-based meals and meat, fish and vegetable dishes.
Explain cross-contamination. Give staff an example of how this may occur: a wandering stirring spoon between the rice and pasta, for example, or the re-use of oil that has already been used to fry some breaded products.
Convey the severity of your condition. Sadly, not everyone takes food sensitivities seriously, possibly because many fad dieters and celebrities casually claim to be ‘allergic’ to various foods. Don’t just say ‘I can’t eat gluten,’ use powerful words: ‘I have coeliac disease’ or ‘Consuming even a trace of gluten will make me extremely ill.’
Get family, friends and colleagues ‘on side’ before you go out. Let them know about your dietary needs and that you will need to talk about them, so you don’t feel embarrassed when the time comes, and they can support you as needed.
If you’re not comfortable with the arrangements and don’t feel re-assured that you can be safely catered for, then change your plans.

Once you arrive

Ask to meet the person you spoke with. Go through your conversation again, confirming what you’ve agreed, reminding the other person of how serious CD is, about cross-contamination issues and of the need to check labels on products such as stock cubes, bouillon or sauces that the chef may be using.
When you arrive at a restaurant at which you haven’t pre-booked, inform a member of staff immediately about your requirements. Ask if they can check whether there are safe foods available. Don’t be shy of articulating the precise consequences of errors. Ensure that your conversation is witnessed by members of your party. If you are not confident that the seriousness of your condition is appreciated, don’t eat there.
Read menus carefully. Never let hunger or impatience get the better of judgement. Ask waiting staff to clarify ambiguities and specify safe meals – possibly recommended by the chefs.
Don’t be shy of questioning staff precisely. Is the chef 100 per cent certain of all the ingredients he uses in his recipe? Might a food be cooked in oil previously used to cook an unsafe food? Are separate chopping boards and knives used to prepare different foods? What are the ingredients of the dressings? Have the ‘safe’ desserts been stored alongside others? Listen carefully to replies.
Don’t become complacent. Go through the usual checks in restaurants in which you’ve previously dined and have come to ‘know’. Suppliers, ingredients, chefs, recipes and menus all change. Check every time.
When your food arrives, use your eyes and nose. Does it look all right? Never pick croutons out of salad, for instance – send it back. Re-confirm with waiting staff that your meal is safe: in busy restaurants, with many clients to attend to, instructions can be forgotten and mistakes made.
Be polite throughout. Make a point at the end of the meal of thanking staff for catering for you. It will encourage them to become more aware of those with specific dietary needs. Further, spread the word and report excellent establishments to others.
Remember: it’s OK if you don’t want to go through this rigmarole. Understandably, there will be times when you may not want to wear your ‘coeliac hat’. A bit depressing, perhaps, but in this instance plain food is safest – like meat and vegetables, or a baked potato and cheese. Soups, stews and other dishes where ingredients are easily disguised or hidden are best avoided.

Other eateries and takeaways

Obviously, there are other places where you’ll eat: places you may not want or be able to ring up beforehand.

The ‘chippie’

Of course you can avoid pies and battered fish, but it’s cross-contamination in the oil used for frying chips that’s the key issue here. Some chip shops have special evenings for coeliacs.

Fast-food chains

Some of the popular fast-food chains’ products are listed in the Food and Drink Directory, and these chains will gladly give you a list of GF food served.

Pubs

Some pubs have a GF menu.

The ‘Italian’

Italian restaurants are often coeliac-unfriendly, with pizza and pasta galore. Some pizzerias will add toppings to your own GF pizza base – but you must stress that it needs to be baked in a clean oven. Some chains have ‘allergy charts’ on their websites.

The Chinese takeaway

Wheat noodles and soy sauce are an obvious source of gluten, but there’s also the problem of the tradition of not washing a wok, causing possible cross-contamination.

The Indian takeaway

Traditional Indian cooking – especially from the south – is largely, but not totally, GF. But watch out for traditional breads like naans. Chickpea flour is the usual thickening agent, though, which is naturally free from gluten. Ask about cross-contamination of deep-fried foods.

The sushi bar

A lot of sushi is naturally free from gluten, but you need to check. Check the soy sauce too. The sandwich or salad bar Some sandwich bars have GF sandwiches. In salads, any grain should be checked, but gluten may be hiding in dressings too. Those bars that allow you to make up your own salads and choose your own dressings are the safest.

Coffee and tea shops

These increasingly stock GF sweet treats.

‘Eating out’ labelling

The European regulations on the labelling of foods for coeliacs that came into full force in 2012 also apply to foods bought in restaurants, takeaways, delis, cafés and other eateries. In other words, food products with under 20 p.p.m. of gluten can be labelled ‘gluten-free’ and those under 100 p.p.m. ‘very low gluten’. Supplementary claims – such as ‘suitable for coeliacs’ – may also be made in these cases. The FSA says, ‘These claims can be made, for example, on menus, blackboards, or in discussions between the customer and the serving staff.’ Outlets now have to put forward their foods for analytical testing before claims can be made, and they have to be able to demonstrate that controls remain in place to maintain such low levels of gluten.

There is a concern that smaller outlets may not be able to afford the testing required on their foods and meals to satisfy the legislation, limiting options for coeliacs. The FSA says, ‘If they do not contain any gluten-containing ingredients, and producers have made every reasonable effort to minimize cross-contamination, factual statements can be made about the presence/absence of gluten-containing cereal ingredients – for example “no gluten-containing ingredients” – provided they do not indicate suitability for those with a gluten intolerance or mention levels of gluten. These statements will help coeliacs make informed choices and prevent further restriction of their diet.’

Dining at friends’

Being invited to dinner and having to inform your hosts of your condition can feel awkward, but you must impress upon them its seriousness. You may have to explain CD from ‘scratch’ – what gluten is, where it is found, food labelling, cross-contamination issues, places in which wheat ‘lurks’ (such as sauces and stock cubes) and so on. It may feel more trouble than it’s worth, but good friends will be accommodating and do their utmost to help. Go easy on them: it can be a lot to take in, and some may make mistakes.

Don’t be shy of enquiring what your hosts are planning to prepare: ‘May I ask what you’re thinking of serving? I’m afraid my severe intolerance to gluten restricts what I can eat.’

You could ease your discomfort by offering to help with preparations and cooking, or by offering to bring your own safe ingredients or prepared dishes that can be microwaved.