Coeliac disease + food go hand in hand and being diagnosed will raise the inevitable question… ‘What can I eat?’ Worry not! This guide will take you through the basics of what food is safe and not safe and how to tell the difference. It looks at how you can stay safe from cross-contamination. And also offers a FREE DOWNLOADABLE GUIDE to Food Safety for Coeliacs.
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Coeliac Disease + Food – A Critical Relationship
Coeliac Disease + food and eating is the central and most immediate question for anyone diagnosed with the disease. Why? Because Coeliac (or Celiac) is a condition which at its simplest level, is about food. Specifically… the protein gluten. The medical basics are that it is an autoimmune disease, causing the body to produce an anti-body in response to the presence of ingested gluten. The anti-body then attacks and damages the lining of the small intestine. Effectively, the body attacks itself and the result is an inability to absorb essential nutrients from the food we eat.
The treatment for Coeliac therefore, is that anyone diagnosed must stop eating gluten… ALL gluten… Even the tiniest trace. If there’s no gluten being eaten, the body will not produce the anti-body. Not producing the anti-body means the body will stop attacking itself. If it stops attacking itself, then it is able to heal. Simple.
What Might Happen if Someone with Coeliac Disease Continues to Eat Gluten?
First Know Your Symptoms of Coeliac :
The symptoms of Coeliac are many and those who have the condition will be all too familiar with how they personally experience the disease… It varies from person to person. But essentially, Coeliac Disease symptoms may include anything from diarrhoea, wind, constipation, nausea and vomiting, to stomach pains and bloating. It can even be ‘silent’ with few or no symptoms at all.
Sufferers may lose weight or become nutritionally deficient (particularly for iron, vitamin B12, Folic Acid, Vitamin D and Calcium) because they are not absorbing nutrients from the food they eat. As a result, they may become anaemic, exhausted, develop mouth ulcers or notice weakness in tooth enamel. For some, the symptoms are serious enough to result in liver abnormalities, miscarriages and neurological problems. An associated condition known as Dermatitis Herpetiformis may be present, causing skin rashes.
Whatever your immediate symptoms of Coeliac Disease, it is important that you learn to recognise them. If you eat gluten, how will your body react and how will you feel?
Coeliac Symptoms In Children
Symptoms particularly include stomach pain, bloating, diarrhoea and vomiting. But also include lethargy and exhaustion, weight loss or failure to grow, poor appetite and even behavioural distress. Yep… Miss GF’s perpetual tantrums (as I only now realise in hindsight) were probably at times, the result of a condition we were yet to diagnose…
Yet the simple and very straight forward answer to alleviating these symptoms and to allowing the body to recover is to avoid eating gluten. The connection between Coeliac disease + food is absolute.
If you have a Coeliac child, check out my other posts specifically relating to gluten free kids and parenting.
The consequences of continuing to eat gluten if you are Coeliac are massive. Longer-term malnutrition can take a huge toll on the body and may include infertility, osteoporosis and bone weakness, depression and dental problems. Untreated and poorly managed Coeliac Disease can also result in lactose intolerance and even a higher risk of Lymphoma and bowel cancer. Please note though, that after 3 to 5 years of following a gluten-free diet, the cancer risk will drop to that of the normal population.
Once on a gluten free diet, most people see a reasonably quick improvement in how they feel (although it can take many months for full recovery, particularly if gut damage has been significant). If you have any doubts about how your recovery is progressing, it is essential you discuss with your doctor or consultant. It may be that there are secondary intolerances or health issues as a result of either the Coeliac or something else. And it is important that you check out any worries you have.
For children, who need nutrients to develop and grow, the consequences are grave. If left ‘untreated’, longer-term risks include an increased possibility of dental problems, delayed puberty, higher risk of some cancers, infertility and osteoporosis.
Whether symptoms are severe or manageable, treatment is not optional. If you are a parent, this is serious. Your child must learn how to eat gluten-safe. Do not let your child (and teach them not to) knowingly eat gluten. Ever again.
That may mean some difficult and upsetting conversations with them about no longer being able to eat the food they took for granted… (at least not in its glutenous form). But they need to learn that Coeliac Disease + food are completely related and that learning what they can and can’t eat is crucial to their health.
Although it may take several months to heal from pre-diagnosis illness and gut damage, a strict gluten free diet is the key step to making your child well. Once recovered, they should be able to enjoy a fully active life and have as much energy as their peers. It is important to follow the advice of your paediatric consultant or dietician however, as regards the taking of vitamin and mineral supplements. Coeliac may result in some deficiencies that are less than obvious. (See section ‘Post-Diagnosis Health Checks’ and related section on ‘Calcium & Vitamin D Intake’ for adolescents).
Coeliac Disease + Food – What is Gluten & Where is it Found?
Gluten is the name used for a large group of proteins that are specifically found in wheat (including spelt), barley, rye and triticale (a cross between wheat and rye). Gluten will therefore be found in all products made with these grains and in all foods which use their bi-products (extracts, starches, etc). In nature, gluten plays an important part in the plant’s growth, nourishing the plant embryos during germination. In ‘normal’ baking and cooking, it is gluten which provides structure and elasticity to food, effectively sticking it together.
Gluten cannot be absorbed through the skin. To cause harm to Coeliacs (Celiacs), it has to be eaten and ingested.
The Key Foods Where Gluten is Found
Most frequently found in traditional (not gluten free) baked foods such as bread, pizza, pastry, cakes, biscuits and crackers. It is also the key ingredient in pasta, some cereals and breadcrumbs. As a thickener, it is commonly used in soups and sauces. Wheat-gluten is further found in various wheat-originated ‘grains’ and derivatives, such as cous cous, semolina, bulgur wheat, matzo and spelt.
Is most commonly found in malt, beer, brewer’s yeast, soups, as a grain (used as a side-dish) and in some cereals. It also notoriously turns up as Barley Malt Extract with determined regularity as a flavour enhancer in some chocolate, sweets, crisps, spreads, frozen chip coatings, drink powders, ready meals and lots of other foods that without it would be entirely safe. Barley Malt Extract is one of the demons of my supermarket shop! It seems to be largely unnecessary in its addition and is often near impossible to decipher whether it has been used at a level which is either safe or unsafe to Coeliacs. There is now the option of cross-checking most products on the internet and via checker apps. However, it can be simply easier to avoid anything containing Barley Malt. If you are very sensitive or get it wrong, the health implications are simply too great.
Will be known most for its presence in Rye bread. But it is also frequently used in cereals and in some beers.
Is found in some breads, cereals and pastas.
Coeliac Disease + Food Basics – The General Rule
As a general rule, foods which are unprocessed and raw (obviously not including wheat, barley or rye) are likely to be safe. But ANY food that has been processed should be treated with caution when you are first diagnosed. Read the Labels (this article on labelling and the law from Coeliac UK will help you) to check for any gluten containing ingredients and ‘may contain’ warnings. But don’t panic! You will quickly become a pro at label-reading. And will also very quickly get to know what foods are definitely safe, which are absolutely not safe and which are maybes that need to be regularly checked.
As a helpful starting point, I have put together a Coeliac Disease + Food GLUTEN-SAFETY CHECKLIST that I hope will be helpful to getting you familiar and confident with the basics of the gluten free diet. If you would like a FREE COPY, you can access a downloadable PDF using the request box below.
Oats – a special case for some Coeliacs
A few Coeliac sufferers will also be sensitive to eating oats. Although oats do not contain gluten, they contain a protein called Avenin, which is similar to gluten and can affect some people. It is usual once either you or your child are diagnosed, to be advised by your consultant/paediatrician to avoid eating oats (even ‘gluten free’ ones) for anything up to a year. After this, there is a very cautious process of reintroducing them to the diet, to test out sensitivity levels. We have been fortunate not to have any ill-effects, but it is really important to follow the advice from your medical consultant on this one.
Coeliac Disease + Food – A Quick Guide to Hidden Gluten & Cross-Contamination
Whilst the obvious wheat and gluten-based products are pretty easy to avoid, you need to be more vigilant in hunting down hidden gluten… And believe me, it’s everywhere.
OATS : CROSS-CONTAMINATION
Oat (Avenin)-Intolerant Coeliacs/Celiacs
As noted above, oats do not contain gluten, but they do contain a similarly-structured protein called avenin, which some Coeliacs are intolerant to. This can make life trickier. Why? Because oats are found in lots of commercial foods labelled ‘gluten free’. So if either you or your child cannot eat oats, beware. You will need to check even the gluten free food labels really carefully to be sure they are safe to eat.
If you or your child are able to tolerate oats, then be happy. They are a great source of nutrients and are fantastic in baking. For Coeliacs however, they are still not straight forward.
Most oats are grown in fields that have also been used to cultivate gluten-based grains (wheat, barley or rye). If you have ever looked across the top of a standard oat field whilst the crop is growing, you will see why this is a problem. It is incredible what else is growing in there. You will see plants of all variants (glutenous or not), most likely seeded from previous harvests. And that leads to cross-contamination. If the crop has not been carefully managed by the farmer to weed out and ensure it is safe for Coeliac consumption, then there is a high chance that some of the bad stuff is also going to get into the truck on harvest. If not, you can bet your bottom dollar that when it hits the mill, there will some stray gluten jumping into the sack from previous millings.
Buy your oats carefully. They will cost you more, but they must be certified gluten free. Anything less is a false economy and could make you sick.
Coeliac Disease + Food – HIDDEN GLUTEN IN THE SUPERMARKETS
Be in no doubt that being pedantic and checking every label pays off. You are looking for anything that says wheat, barley or rye in any form. But there are also lots of ingredients which don’t have recognisable gluten-words in them, which makes the whole process a little random. European regulations currently require an easily identifiable emphasis for allergens on labelling, but it is still important that for the longer-term, both you and your child have a good understanding of what ingredients must be avoided.
Particularly when starting out, it is worth grabbing an app for your phone that will help you to check any ingredients you are unsure of, either by scanning or alphabetically (to reassure on safety). There are a number out there, but they are being improved all the time, so it is worth finding one that suits you. If you are a member of Coeliac UK, you can access their Gluten Free Food Checker app, which has several search and scan options.
Be aware that the law around food labelling seems to change frequently. For that reason, I would suggest you check out Coeliac UK’s web-page for up to date information.
… And Re-Checking Labels
Also be aware that manufacturers change their ingredients from time to time and your favourite ‘safe’ brand may no longer be okay. It is therefore important that you remain vigilant and re-check labels every time. It will lengthen your shopping trip, but at least you can feel reassured you will be safe.
Fortunately, learning to check labels is a fast-track and before you blink, it will become second nature… Just remember to take your glasses (if you need them) to the supermarket (she says from experience!).
What sort of foods contain hidden gluten?
You can find gluten in anything from the obvious ready meals and processed foods to less obvious products that simply leave you scratching your head when you read the label and asking ‘why?’. I am frequently left bewildered that gluten-ingredients are listed in foods that really have no need for them.
Some of the main culprits for hidden gluten include :
- Crisps, sweets and chocolate (and yes… that includes childhood go-to’s such as Smarties, Maltesers, Mars Bars and Lindt Bunnies)
- Drinks (remember that old fave lemon barley water?). Not to mention beer… Okay, your little person isn’t ready for that yet, but she or he may just dip a finger in daddy’s (or mummy’s) pint glass. Early education that it is to be avoided at all costs may just save a bit of disappointment later, as well as inadvertent sickness now).
- Some instant coffee, whiteners and hot chocolate. Also flavouring syrups.
- Ice-cream (yep…. cookie-dough is off the menu too), some meringues and other desserts.
- Seasonings and stock cubes (forget Oxo… it isn’t going to make your family a happy one). And Marmite!
- Breakfast cereals (even some popular brands of rice pops and corn flakes have unsafe levels of barley malt extract)
- Some brands of tinned food such as baked beans and other beans in sauces.
- Processed meats, including ham (we got unexpectedly caught out with a breaded-ham disaster), sausages, burgers and ribs.
- Dressings and sauces (including some ketchup brands, barbecue sauces and most soy sauce).
- Soups (flour used as a thickener) and added barley or flavourings.
- Dairy free milk products
- Frozen chips (many have coatings to add flavour and crispness).
- Lentils, quinoa and other gluten free grains and seeds are sometimes unsafe due to potential cross-contamination during production.
- Yeast – Yep… Seriously! I went to check a supermarket own brand one day, only to find it contained wheat! Why???
As you learn how to check labels, be sure to help your child learn too (as soon as they can read). This is an essential skill. Take them shopping with you and enlist their support in making sure the food is safe for them to eat. You will be amazed at how quickly they become confident in recognising key words and question where they are unsure. An independent Miss GF amazed us aged 7, when (despite our anxieties) she insisted on going over to the ice cream kiosk on her own. We watched as she took one ice cream after another from the seller, carefully reading the labels and handing one after another back until she was happy her treat was safe. What a star!
Coeliac Disease + Food : A WARNING ABOUT EMERGING INFORMATION ON ARSENIC IN RICE
Many people choose or need to buy their gluten-free versions of basics such as bread, crackers and pasta, from the ever-growing ranges now available in supermarkets (although products significantly vary in taste, palatability and nutritional content). This may be a choice you make because you don’t have the time or inclination to bake. Or because it is a necessity to enable you to cater for gluten freedom in an otherwise gluten-eating household.
But be aware… The vast majority of commercial gluten free ‘staples’ have recipes built around rice flour which has recently been found to contain small amounts of arsenic. For the average wheat-eating person, the amount they are likely to consume will be relatively insignificant. For people who suffer from Coeliac Disease however, rice may be in a large proportion of what they eat (particularly in commercial products). I will not go into the science and research in this guide, but you can access further information on arsenic in rice from this BBC news article, BBC Health Article from Dr Michael Mosley, the Dartmouth Toxic Metals Superfund Research Program and Nature World News. Although there is no current government or public ‘health warnings’ in place, check out the links as you wish and you can make your own judgement.
With the growing research and awareness of arsenic in rice, it is (I hope) only a matter of time before commercial gluten free food producers start to take note and dilute their ingredients.
Things you can do to Limit the Risk
For the time being, make sure you wash rice before cooking it and try limiting the amount of rice-based foods you eat. Baking at home at least some of the time, is a good option. I developed an incredible gluten free wholemeal bread recipe and also a Vegan Gluten Free Wholemeal Bread that are easy to make and entirely rice-free. If you find you enjoy cooking, it is also really easy to mix your own flour blends. Simply make up a large batch and keep in an airtight container. Then you will find it is available whenever you need it with little fuss. Home-mixed flour blends generally work out cheaper to produce and they have flexibility to tweak a little here and there if the recipe demands it.
If you are keen to limit rice intake and don’t want to self-blend, you can also now buy a couple of rice-free blends on the internet and in some specialist food stores. Bobs Red Mill produce two rice-free flour blends – an All-Purpose Baking Flour and a Paleo Baking Flour (which is almond-flour based).
Coeliac Disease + Food: CROSS-CONTAMINATION IN FOOD PREPARATION
When considering Coeliac Disease + food preparation, it is essential that you are aware of the hidden potential for cross-contamination. Whether you home-bake and cook, or just prepare food bought from the supermarket, the gluten risk may still be present in your kitchen.
At GFHQ, we choose to live in a gluten free household, which means we all eat the same food and there are no gluten-containing ingredients (other than Mr GF’s beer) in the house. I fully understand that this may not be so easy for you however. If you have other children for example, who are not gluten free, or your budget is tight (gluten free food is considerably more expensive than wheat-based products), you may have to juggle both gluten and non-gluten space side by side.
It is important to remember that most basic foodstuffs are naturally gluten free. Meat, fish, nuts, beans and pulses, milk, cheese, plain yoghurt, butter and other dairy-based products are all good. Also naturally safe are coconut, cooking oils, eggs, all vegetables and fruit, potatoes, quinoa, buckwheat and rice. So cooking a fresh family meal from scratch can be relatively safe. Don’t forget to down-load my FREE Coeliac Disease + Food Guide on What to Eat, Avoid & Be Careful Of… (see the link above), which will help you know where caution is needed.
The cross-contamination in your kitchen and those of others however, comes from less obvious sources :
Butter dishes/packets, jam jars, spreads, etc
Whether at home or away, this one is an easy mistake. Knives used to spread butter, houmous, cheese spread, jam or other preserves onto glutenous bread and then put back into the jam jar or butter dish, will have been contaminated by crumbs. They will no longer be coeliac-safe.
To avoid vulnerability, use specifically named or labelled pots and spreads. As an adult, I also always take my own butter when I stay with friends. And when Miss GF had a child-minder or went to friends for tea, we sent her with a small, labelled pot of butter, jam, etc for her own use. Although you can operate a strict ‘no dipping the knife in twice’ policy, most children (and many adults) won’t always ‘get it’ (or remember until it is too late), so it is better to play safe.
It’s really helpful (particularly if you have a child with Coeliac or a dual-gluten household) to have some ready-made stickers which you can stick on designated foods. It just makes it clearer for everyone!
Toasters, grills, chopping boards and shared implements for food preparation (eg. bread knives and serving/cooking utensils)
We have been caught out with toasters on more than one occasion. Once they have been used for gluten-containing bread, they are very dangerous things indeed. If you have ever tipped one upside down, you will know what I mean. The crumbs gather and gluten-free bread is no longer safe.
If you are planning to operate a gluten-free household, buy a new one. Seriously… it’s peace of mind. If you are operating a dual-tolerance household, you will need to think about having two… just label them to make sure you don’t get them confused. In our early gluten free days, we would allow staying friends to toast ‘normal’ bread in our old toaster. We got very blasé and on one occasion forgot to swap them back when the guests left. We were faced with ‘buy a third one’ or spend a lot of time pulling the whole thing apart to ‘deep clean’. It was an expensive mistake. We no longer allow glutenous bread in the house!
Your other option is to use toaster bags. Personally, I don’t trust them for regular use. But when we go away either to stay with friends or in a hotel, I make sure I take some with me for the breakfast slot. I honestly won’t travel without them! Just cut the bread to make sure it is completely contained in the bag for protection before toasting.
Grilling is another option, but whether it is toast, burgers, fish or peppers under the grill, you need to again be aware of cross-contamination. Grill pans, griddles, chopping boards, bread knives, serving utensils and food preparation surfaces generally, may all contain hidden dangers. If there are traces of gluten remaining from previous users (and that includes having been used for non-gluten free burgers and sausages), You are likely to end up with gluten on the dinner plate. If you are eating out, discuss with restaurant staff ahead of time (if possible), to check how food is/can be prepared and be ready to find somewhere else to eat if you are not reassured. ‘Plan B’ is a given requirement.
At home or with friends, your easiest route to safety for grill pans and griddles, is to use a layer of clean foil under food being cooked. If you are eating in a restaurant, be assertive and ask for grill pans to be protected in the same way. It helps if you explain why this is important. Restaurants these days are keen to keep their customers safe and are increasingly aware of allergen safety.
General Food Preparation
For food preparation areas, serving utensils and bread knives, make sure they have been washed scrupulously and are not being used across both gluten and gluten free food sources. At home, it helps to designate risky items such as chopping boards for gluten free use only. Importantly, make sure you are teaching your child about the hidden as well as obvious dangers. Miss GF is like a hawk when she sees food being served up and has no qualms in ‘educating’ kitchen or serving staff. On one occasion (having been told by the school kitchen that the chips were gluten free and how they were prepared), she saw them using the same tongs to pick up the chips that they had used for the wheat-flour battered fish. The staff were told in no uncertain terms by my assertive teenager about the mistake being made.
Which brings us to…
Yes, that good old British favourite of potatoes fried in oil (which sounds perfectly gluten free) is not always a safe option.
Oven chips – read labels carefully. Many commercially frozen varieties are coated for flavour and crispness with wheat-based seasoning. If there are no gluten-containing ingredients listed however, it is also important to check labels for potential cross-contamination from production processes (‘may contain’ or ‘made in a factory that also handles’ label).
Chip-shop chips – Be prepared for this causing endless amounts of frustration and upset. Living by the sea, we have lots of fish and chip shops in our home town, yet finding one with ‘safe’ chips, let alone one that caters with gluten free batter is a serious challenge. Any fryer that has been used for wheat-battered or crumbed fish, fish cakes, battered sausages, onion rings, scampi, etc and is also used to fry chips is NOT safe.
Check each and every shop to find out whether they fry their chips in a separate designated fryer and be certain they don’t put anything else in there before you buy. If you are really lucky, you may strike gold with a fish and chip shop owner who has a gluten-intolerant family member and caters for all your fishy needs whenever you desire. Or failing that, some fish and chip shops offer gluten free fish and chip options one or two nights a week, usually on the day they clean down their fryers and change the oil.
Buffets, shared food tables and buying food from stalls and counters
Food that is gluten free should be kept separately from food which contains gluten. If you see food labelled ‘gluten free’ placed open on buffet tables, at street food stalls or at deli-counters side-by-side with wheat or gluten-based products, it may be wise to avoid them. Dips are particularly dangerous. And any crumbs that accidentally ‘hop’ from one plate to another will cause risk… As will inadvertent use of cutlery or knives by unthinking stall-holders and gluten-eaters.
On one occasion, I went to a stall at a local food fair which proudly displayed a sign for gluten free brownies. Getting excited, I went for a closer look, only to discover that the same knife and tongs had been used to cut and serve all the other cakes. Needless to say, I gave a lecture in cross-contamination. I’ll be honest, this is a huge bug-bear of mine. I have given ‘that’ lecture many times before and since… If something is going to be advertised as ‘gluten free’… don’t serve it with gluten!
It is also becoming a more frequent issue when eating out (Subway and Pret a Manger I’m looking at you!). Food labelled as gluten free, but is not actually safe for Coeliacs due to manufacturing or preparation methods is NOT gluten free.
The cross-contamination issue can also raise a dilemma when eating at parties or with family and friends. It is pretty usual at social gatherings for food to be placed on a large table so that everyone can dig in. Ultimately you have two options and the way you go will probably depend on how well you know the hosts…
If they are close friends or family, be open and honest with them about the potential risks ahead of the party. They may ‘get it’ and bend over backwards to make sure that gluten free food is kept separately and even clearly labelled (I particularly like these party labels, which are great for bring and share events too). Or they may not. In which case you can resort to plan B and bring some sustenance to keep you or your gluten free child happy.
Friends & Relatives who don’t ‘get it’
As the parent of a Coeliac child and also being gluten-intolerant myself, I know that this is an endless source of frustration and upset. Friends and family (and for some people, this includes grandparents) sometimes simply don’t ‘get it’ or take the health risk seriously. Be ready and prepared to challenge what feel like thoughtless comments and naivety or even down-right stubbornness and non-acceptance : ‘I didn’t get any gluten free cake for tea… it was so expensive…’ ‘Surely one biscuit/sandwich/piece of cake won’t hurt…’ ‘She’ll grow out of it…’ ‘If you have a little, maybe you’ll learn to tolerate it better’. ‘Oh don’t be so daft (re cross-contamination), you won’t die from a crumb or two…’ ‘But it’s Christmas…’ etc.
Breathe deep, count to ten and have your ‘parrot-like’ response ready. With friends, you may choose to give a brief explanation and have a ready alternative in your bag to eat with minimal fuss. With family (particularly close family with whom you eat on visits regularly), you have permission to give the full-on lecture on everything you have learnt so far about Coeliac disease + food and the health implications of being glutened. Providing a guilt trip can sometimes prick conscience and change attitudes.
However you choose to deal with it, remember you have a right to challenge. It is your health or the health of your child… Keep safe.