Living with coeliac disease: the impact on children and family.
It is impossible for home life not to be impacted by coeliac disease (CD) when at least one member of the family has the condition. First-degree relatives of those with coeliac disease are ten times more likely to have it themselves, so it is natural to be concerned about all loved ones – especially children.
Pregnancy and birth
There is an increased risk of fertility difficulties as an undiagnosed coeliac, so if you are trying to conceive, are pregnant for the first time or are pregnant again following a miscarriage, you may be naturally nervous about carrying a child to term. Rest assured that a strict gluten-free diet (GFD) should soon normalize your fertility levels, and that there are no increased risks to you or your unborn child as a coeliac mum-to-be who adheres to the diet.
If you’re planning a pregnancy, discuss it with your health-care advisers. It may not be advisable to try to conceive soon after your diagnosis if you have a compromised nutritional status.
Your intake and levels of folic acid (folate) are key. You may be deficient in this B vitamin, and all women are advised to supplement with 400 micrograms of folic acid daily as soon as they stop using contraception, and to increase their intake of folic acid with, for example, green vegetables. Women with coeliac disease may need a little more, so speak to your dietitian. Folic acid helps to prevent neural-tube disorders such as spina bifida in your unborn child.
General healthy eating guidelines, apply to all mothers-to-be too: at least five portions of fruit and vegetables daily, lots of gluten-free (GF) starches and grains, plenty of fluids, moderate caffeine intake – but no alcohol.
Calcium intake is particularly important in pregnancy, especially in coeliac mums, and low-fat dairy products are recommended.
Similarly, iron intake, too, is key – meats, fish, eggs and pulses supply iron, as well as vital protein. Only supplement with iron on medical advice. Try gluten free crackers or rice cakes if you need to nibble something to help with morning sickness.
The UK Department of Health advises all women to avoid certain foods in pregnancy:
- Raw and partially cooked eggs
- Raw shellfish and meats
- Blue-veined and soft-ripened cheeses
- Shark, marlin and swordfish
- Liver and liver products.
Your UK prescription entitlement increases in the third trimester of your pregnancy, so take advantage of this and review the foods you need with your dietitian.
There are no particular considerations for coeliac women in childbirth, although some studies suggest that giving birth naturally rather than via Caesarean section decreases the likelihood of your child developing coeliac disease in later life.
Exclusive breastfeeding in the first six months is the best thing you can do for your child’s health – and research suggests that this can offer some protection against the development of coeliac disease later on. You are entitled to four additional units of prescription gluten free food when breastfeeding. Formula milk provides all the nutrition your baby needs, and all is gluten free.
Some babies aren’t satisfied with a milk-only diet until six months, and may need to start solids a little sooner – but never before four months. Discuss this with your midwife or health-care adviser.
Gluten should not be introduced into any baby’s diet before six months, but there appear to be no benefits for delaying it any longer than this. Coeliac UK advises that once a baby is established on solids, gluten should be given regularly, since coeliac disease can only be diagnosed once gluten is established in the diet. Should symptoms occur, they are usually very obvious at this young age.
Extended breastfeeding during weaning also appears to be protective, although whether this delays or prevents the onset of coeliac disease is still being examined.
The weaning advice to babies at higher risk of coeliac disease is subject to change, owing to ongoing studies in this area, so always take your definitive advice from Coeliac UK or your health-care advisers.
Children and coeliac disease
If you have a child who is newly diagnosed with coeliac disease you will feel a mix of emotions: protective, anxious, fearful, relieved. It may be some consolation to know that children are tough little things who adapt superbly to the new requirements – possibly because they won’t consider their diet to be a priority in their lives at that age. At a time when they’re still growing and developing, lasting damage caused by poor absorption of food and malnutrition is also unlikely.
It’s generally good advice to focus on the present – do what you need to do now – and cross certain bridges when you come to them.
You will have access to a specialist paediatric dietitian if your child is diagnosed with coeliac disease, who will be best placed to advise on any nutritional concerns. There are no specific recommendations for coeliac children, but the dietitian will ensure that you understand the need for a healthy gluten free diet and an adequate intake of such minerals as calcium and iron. Some children may have anaemia on diagnosis, so this will be addressed.
If diagnosed in infancy, your child may not have been exposed to too many gluten-containing foods, and so he or she may not be too concerned with (or even notice) the sudden change in diet. Your child may, though, have made the connection with having felt sick and the previous diet, and so may be more aware than you think. You will certainly need to talk to your child at some point – the sooner the better – and this really depends on the level of maturity and when you feel your child is ready. Here are some tips:
- The name ‘coeliac disease’ features the word ‘disease’ right there in the name: this can alarm children, so it may be better to talk in terms of a ‘poorly tummy’ caused by gluten.
- Get children involved in food selection and cooking as soon as possible. Learning about gluten free foods can take place during supermarket shops, meal preparation and outings to restaurants – let them try to choose foods and order their own meals, for instance, and teach them to articulate their requirements to waiting staff.
- Introduce them to new foods regularly – including the unusual ones. Quinoa was the ancient grain of the Incas – build a story, a history lesson, around it to appeal to them. Teach them how to decline food. ‘No thank you’ may be better than ‘I can’t eat that.’ Teach them that what they put into their bodies is up to them, and there’s no obligation to eat something they don’t like, even if gluten free, or if a relative has ‘made it specially’.
- Don’t overwhelm children with information at first – issues such as cross-contamination need to be conveyed eventually, but this is something you can manage on their behalf at first.
- Teach them about labelling gradually – the Crossed Grain symbol is one that they can learn to look out for to help ‘break in’ to the subject.
- Be positive and upbeat about the situation – your child will pick up on it if you display fretfulness about it. The gluten free diet is absolutely manageable and it’s important to convey this to your child.
- Explain coeliac disease to other children in the family too. Siblings need to understand the situation and feel involved in the family’s care of the coeliac child.
- All kids deserve a treat or reward from time to time, but don’t give a coeliac child two treats where you might only give a non-coeliac child one – it’s easy to feel you have to offer an extra ‘bonus’ snack as compensation for having the condition, but ultimately it’s not good for the child or the child’s tummy.
- If the household is not going gluten free, it may be helpful to use ‘safe’ stickers to highlight coeliac-friendly food – you can turn this into an educational game.
- Coeliac UK publishes very useful booklets for parents and carers: Getting Started, Out and About and Me and My Tummy.
Nursery and school
Sending your coeliac child to school can be nerve-racking because suddenly he or she will be under someone else’s care and can potentially be exposed to risky foods such as crisps and wheat snacks.
Coeliac UK can send you a parents’ information pack, with information on how to inform your child’s nursery or school about the condition. Conveying key information to staff is vital, and Coeliac UK offers a draft letter on its website. You should explain what coeliac disease is, that your child is on a gluten free diet, where gluten is found and what your child cannot eat.
You will also need to broach the issue of school lunches, and whether your child will be bringing his or her own, or whether catering systems are in place to cater or potentially cater for your child (schools aren’t obliged to provide gluten free meals – but a meeting with the head of catering can be productive). You may feel happier, at least initially, providing a gluten free packed lunch, in which case you will need to check how closely children are supervised to prevent them swapping foods.
Autism and coeliac disease
According to the National Institute for Health and Clinical Excellence: ‘There is no conclusive evidence on the prevalence of coeliac disease in people with autism. Anecdotally, higher rates of coeliac disease are seen in people with autism, and when diagnosed, adherence to a gluten-free diet improves both gastrointestinal symptoms and behavioural problems. Research is needed to determine the prevalence of coeliac disease in people with autism and whether any behavioural problems improve following diagnosis.’
With regard to after-school activities and children’s social clubs, communication is key. Those in charge will be understanding and appreciate the need for vigilance if you convey the seriousness of coeliac disease. In situations where children may be given treats, it helps if you supply adults in charge with some gluten free treats in advance as a standby.
Parties present a bigger problem, as you can’t expect other children’s parents to serve gluten free food exclusively. Speak with them well in advance, in person not on the phone, and offer to supply a gluten free replacement party parcel for your child, clearly labelled, or to provide a gluten free cake for the birthday child.
Accept that mistakes will happen, and your child may get a little sick. Never punish your child for this. Remember that being ‘glutened’ may lay your child low for a while, but he or she will get better. Make the best of the bad situation and review the importance of not swapping food or thoughtlessly popping treats into the mouth. Your child is likely to remember the effects of the accident, and will instinctively be more careful in future.
Teenagers and coeliac disease
Teenagers are rarely diagnosed with coeliac disease, so any teenagers with the condition are likely to have had it for some years. At this age, they should be well established on the gluten free diet and understand how to manage their lifestyle. Nevertheless, this is the time during which some teens can get a bit reckless with their diet, possibly as a minor act of rebellion that’s sometimes characteristic of this stage of life.
Some teenagers may be curious – ‘What does wheat taste like? I wonder if a “real” pizza tastes better than the one I have to eat?’ Some succumb to peer pressure – boys especially may be ‘dared’ to consume a harmful food. Some just get complacent. They may have been well for years. Boys may see themselves as strong and immortal, about to become men, and may feel it isn’t macho to ‘fuss’ about food. They may take risks, and may hide it from you, possibly because they don’t want you to worry.
It’s understandable. Teens want to fit in, not stand out, and they don’t want to have to ask to see a label when their mates offer them a sweet from a bag.
The problem with risk-taking is that they may not experience any symptoms. It’s a curious fact about the growing teenage coeliac body that it appears adept at not producing overt symptoms of gluten consumption – which is possibly why few are diagnosed at this time. Your son or daughter may feel perfectly well, which could justify and excuse the gluten consumption in his or her mind.
It’s worth watching out for any change in health or behaviour, and talking to your teen regularly about the gluten free diet in a non-judgemental or castigating way, reminding him or her that damage can be silent, and reiterating the importance of the diet. But don’t get paranoid: many teens manage their gluten free diet and lifestyle with exceptional maturity.
Try not to worry or make too much of a fuss. Equip them with practical things before they set off – toaster bags, some gluten free supplies, a gluten free cookbook, their own bread board and biscuit tin. Ensure that they know that they have to communicate their coeliac disease to flatmates and fellow students and university caterers. It’s pointless to advise most young adults not to drink – but do warn them to stay away from beers. A gluten free food parcel after a few weeks will be warmly received.