Living With Coeliac Disease
(This is the third part of the series ‘Gluten Free Kids – A Practical Guide to Parenting a Coeliac Child’. To access the Introduction and subsequent ‘chapters’, please click on the drop down menu ‘Coeliac Parenting Guide’ on the menu bar).
In this section, I will explore how to stay gluten-safe when preparing and enjoying gluten free food, in particular exploring how to be aware of and avoid cross-contamination.
Once you have had your child’s diagnosis, you will (hopefully) start to move forward both practically and emotionally. You will be arming yourself with information on what your child can and can’t eat and you will be managing the difficult conversations with your child about no longer being able to eat the stuff they took for granted…
Over the next few ‘chapters’ I want to share with you from a straight forward experience perspective the things we have learned along the way, both about our day to day experience of the disease and how to live with it as a family. As Miss GF has grown and developed, the challenges we and she have managed have changed. A growing independence with the arrival of adolescence, has confronted our anxieties yet again, but we have started to trust that she can and will be safe out there and that we have taught and supported her well.
Starting in this section with exploring how to stay gluten-safe at home and with friends, I will move on in the next, to talking about how you might manage eating when out and about whether in ‘formal’ restaurants or when seeking fast food.
Beyond this, I will share our wisdom on managing child care and education, friends, playdates and parties, adolescence and travel. If there is anything additional you would like help in thinking about, please let me know.
Food- Staying Gluten Safe
Coeliac Disease is a condition which, at its simplest level, is about food…. and 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, which 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. Symptoms in children include stomach pain, bloating, diarrhoea, vomiting, lethargy and exhaustion, weight loss or failure to grow, poor appetite and even behavioural distress. Yep… those tantrums (as I only now realise in hindsight) were probably at times, the result of a condition we were yet to diagnose…
In the longer term, if not ‘treated’, your child risks significant health issues linked to their condition, including the increased possibility of dental problems, delayed puberty, higher risk of some cancers, infertility and osteoporosis. Whether the symptoms are severe or manageable, treatment is not optional, but in theory is simple… Your child must learn how to eat gluten-safe. Do not let your child (and teach them not to) knowingly eat gluten. Ever again.
Gluten is found in wheat, barley and rye (and all derivatives and bi-products). Avoiding gluten should make your child well (although it may take several months to heal from the pre-diagnosis illness and gut damage). Giving them the tools to avoid gluten for life will ensure they stay well. Staying gluten free is currently the only treatment available, but it also means that the associated risks noted above, will reduce to no more than in the general population.
Once recovered, well and following a gluten free diet, your child should be able to enjoy a fully active life and have as much energy as his/her peers. It is important to follow the advice of your paediatric consultant and dietician however, as regards the taking of vitamin and mineral supplements, as Coeliac may result in some deficiencies that are less than obvious (see section ‘Post-Diagnosis Health Checks’ in the linked chapter)
I do not intend to go into massively long lists of what you can’t eat…. there are plenty of resources out there to help you on this one (including this helpful downloadable PDF Checklist from Coeliac UK) , but in a nutshell, gluten is going to be found in all traditional (not gluten-free) baked goods, such as pizza, bread, cake, biscuits and crackers, as well as pasta, and various wheat-originated ‘grains’ and derivatives, such as cous cous, semolina, matzo and spelt. 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 your child has been diagnosed, to be advised by your paediatric consultant to avoid eating oats (even ‘gluten free’ ones) for anything up to a year and then to very cautiously begin reintroducing them to the diet, to test out sensitivity levels. We were fortunate not to have any ill-effects, but it is really important to follow the advice from your medical consultant on this one.
Your Coeliac child may also be entitled to free NHS prescriptions in the UK, to support their additional dietary needs and the expense that comes with it (gluten free staples can have a hefty price tag). Check with your GP/local health trust as rules and entitlements still vary across the country.
Quick Guide To Hiden Gluten & Cross-Contamination
The obvious wheat-based products are pretty easy to avoid, but you need to be more vigilant in hunting down hidden gluten… and believe me, it’s everywhere.
Oats : Cross-Contamination
Oat (Avenin)-Intolerant Coeliacs
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 a little trickier, because oats are found in lots of commercial foods labelled ‘gluten free’. So if 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 for your child to eat.
If your child is 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, as 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… 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, when harvested, there is a high chance that some of the bad stuff is going to get into the truck as well… and if not, you can bet your bottom dollar that when it hits the mill, there will some stray gluten jumping into the bag 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 your child sick.
Hidden Gluten in the Supermarkets
This is where 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. When you are just 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 updated 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, so I would suggest you check out Coeliac UK’s web-page for up to date information.
You will find gluten in anything from crisps, sweets and chocolate (and yes… that includes childhood go-to’s such as Smarties, Maltesers, Mars Bars and Lindt Bunnies), through drinks (remember that old fave lemon barley water? Not to mention beer… Okay, so 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 and 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), ice-cream (yep…. cookie-dough is off the menu too), stock cubes (forget Oxo… it isn’t going to make your family a happy one), breakfast cereals (even some popular brands of rice pops and corn flakes have barley malt extract), some tinned baked beans, some processed meats (we got unexpectedly caught out with a breaded-ham disaster), dressings and sauces (including some ketchup brands and barbecue sauces and most soy sauce), soups (flour used as a thickener), frozen chips (many have coatings to add flavour and crispness), and now, we have even discovered Marmite is a hazard (guess you’ll never find out whether the little one loves or hates it).
If that isn’t tricky enough, you may also find that your favourite ‘safe’ brand one week has changed their recipe the next time you go to stock up, so checking labels once is not enough… check every time. It will lengthen your shopping trip, but at least you can feel reassured your child will be safe.
Fortunately, you will learn really quickly how to check labels and before you blink, it will become second nature… Just remember to take your glasses (if you need them) to the supermarket. For extra peace of mind, the good people at Coeliac UK have also provided an extensive and constantly updated Food & Drink Directory which you can access if you join the organisation.
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 at a time from the seller, carefully reading the labels and handing one after another back until she was happy her treat was safe. What a star!
A Warning About Emerging Information on Arsenic in Rice
Many people choose or need to buy the 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-tolerant household, but be aware….. The vast majority of commercial gluten free ‘staples’ have recipes built around rice and 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, but for people who suffer from Coeliac Disease, rice may be in a large proportion of what they eat (especially if products are bought commercially). I will not go into the science and research in this guide, but you can access further information here, here, here and here. 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, but in the mean time, baking at home, at least some of the time, is a good option. If you find you enjoy cooking, it is really easy to make up your own flour blends (I have written a comprehensive page on flours and blending with suggested blends that you can find here). If you make up a large batch and keep in an airtight container, you will find it is available whenever you need it with little fuss. I always prefer to make my own flour blends, because generally, they work out cheaper to produce at home and you can tweak a little here and there if your 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 – a wonderful gluten-free, rice-free wholegrain blend produced by fellow blogger The Free From Fairy. Or Bobs Red Mill also produce two rice-free flour blends – an All-Purpose Baking Flour and a Paleo Baking Flour (which is almond-flour based). I have not tried the Bobs Red Mill flours, but can vouch for the Free From Fairy Flour blend being fantastic.
Cross-Contamination – The Hidden Gluten in Food Preparation
Whether you choose to home-make all, some or none of your gluten free pastry, cake, bread, etc, you need to be aware that there are hidden potential cross-contamination risks, whether food is prepared at home or elsewhere. At GF HQ, 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. This may not be so easy for you. If you have other children 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 glutenous and non-glutenous 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, coconut, cooking oils, eggs, all vegetables and fruit, potatoes and rice are naturally free from gluten, so cooking a fresh family meal from scratch is relatively safe (providing you avoid hidden gluten in stock cubes, sauces, gravy and other flavourings).
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. If knives have been used to spread butter, houmous, cheese-spread, jam or other preserves, etc onto glutenous bread and are then put back into the jam jar or butter dish, the remaining product will have been contaminated by crumbs and will no longer be gluten-safe. To avoid vulnerability, make sure your coeliac child has their own labelled pots and spreads. When Miss GF had a child-minder and whenever she goes to friends for tea, or to spend time in other people’s houses where food is likely to be on offer, we send her with a small pot of butter, jam, etc for her own use. We have been lucky with many of her friend’s parents now ensuring safe butter is available. Whilst you could operate a strict ‘no dipping the knife in twice’ policy, children (and many adults) won’t always ‘get it’ (or remember until it is too late), so it is better to play safe.
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 is 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’. 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 and then cut the bread to make sure it is completely contained 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), your coeliac child is likely to end up with gluten on their 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 and explain why this is important. Restaurants these days are keen to keep their customers safe and are increasingly aware of food safety.
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, 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 the obvious dangers. Miss GF is now like a hawk when she sees food being served up and had no qualms in ‘educating’ the kitchen staff at her secondary school when (having told her 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.
Which brings us to chips...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 in factory facilities used for gluten-containing products (‘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, but 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 stall holder had used the same knife and tongs to cut and serve as for all the other cakes. Needless to say, I gave her a lecture in cross-contamination. I’ll be honest, this is a huge bug-bear of mine and 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!
This particular issue can also raise a dilemma when eating at parties with family and friends. It is pretty usual at social gatherings for food to be placed out 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 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 it is an endless source of frustration and upset when friends and family (and for some people, this includes grandparents) 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 nonacceptance… : ‘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…’ ‘Oh don’t be so daft (re cross-contamination), he’s not going to die from a crumb or two…’ ‘But it’s Christmas…’ etc 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 feed your child with minimal fuss. With family (particularly close family with whom you eat on visits regularly), you may give the full-on lecture about everything you have learnt so far and the health implications of being glutened… that guilt trip ‘you don’t want to feel responsible do you’ method can sometimes prick conscience and change attitudes. However you choose to deal with it, remember you have a right to challenge. It is your child… Keep them safe.
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