Children + Coeliac : Exploring the impact of diagnosis and how to support and help your child to learn to live with Coeliac Disease.
(This is 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 Kids’ on the menu bar).
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Children + Coeliac : The impact of Diagnosis – However you feel now… It’s OKay.
It may be that your child has been scarily ill for many years before diagnosis. Or (as with us) you may be really lucky and have a doctor who asks the right questions at the right time and within a matter of weeks Coeliac is confirmed. You’ll find a little about our story here.
Either way, when you discover your child is Coeliac you are likely to experience a number of emotions.
- Panic and fear – What will they eat? Will they still be able to do all the things other kids do? How will I tell them they can’t eat cake… pizza… pasta… bread? Are they going to be sick for the rest of their lives? What if I get it wrong?
- Guilt – Was it my fault? Did I eat something I shouldn’t have during pregnancy? The Coeliac gene came from my side of the family… So it’s my fault right? Could I have taken them to the doctor sooner?
- Denial – Maybe the result is wrong. Maybe we need a retest. Perhaps if we just carry on as we are, it will go away… like a virus.
- Anger – Why my child? It’s not fair. This has massive implications for him/her and for all the plans we had which we ‘can’t’ do anymore.
- Worry – What if someone feeds them something or they decide to eat something that makes them sick? What happens if they get ‘glutened’? Will they ever get well?
- Feelings of Impotence – Not knowing what to do next or where to go for help. Not knowing how to manage the condition. Not knowing what they can or can’t eat or how to keep them safe from cross-contamination, etc.
- Relief – Thank goodness we have a diagnosis. Now we know what has been wrong, we can get well.
Take a deep breath… you’re going to be fine. There is loads of help out there, from the fantastic Coeliac UK (who share a wealth of information and knowledge and tirelessly pursue research into the condition), through to health professionals, blogs, books, Facebook groups and buddies.
So Many Questions…
When Miss GF was diagnosed (and after a few hours of distress), I grabbed the computer and frantically googled Children + Coeliac. I searched for everything I could to help get my head around what Coeliac was. I had so many questions.
Was there a cure? How would diagnosis change her life and ours? What could we/couldn’t we eat? How safe was our kitchen? How would this affect school? Friends? Eating out?
The questions were followed by the equally frantic reading of as many books as I could get my hands on, seeking wisdom from every page.
Sadly there is currently no ‘cure’ for Coeliac. But the great news is that for those with a single diagnosis of Coeliac, the treatment is simple… abstain from eating gluten. For life.
Actually, we count our lucky stars every day. Miss GF has friends who have type 1 Diabetes (constant insulin regime and risk from hypers and hypos); Crohn’s disease (frequent debilitation, endless medical investigations, wider impact on organs and total unpredictability); and life-threatening allergies (constant worry that food could kill them). We just have to worry about staying away from gluten… no drugs, no continual invasive tests. If we make a mistake, she may get sick and it may cause pain, but she will recover and it won’t actually kill her. How fantastically blessed we are.
Children + Coeliac – being positive about diagnosis
As parents, that’s a huge relief… But little people don’t always have the capacity to understand. Not being able to share their beloved pizza/cake/spaghetti bolognese/packet of biscuits, etc may to them, be a full-on disaster.
So, it will fall on you to be strong and positive… really positive. Hard as it feels, your child needs a factual and clear explanation of what Coeliac is and the importance of not eating gluten. And they also need to hear that a diagnosis of Coeliac is not the end of the world (whatever may actually be going through your head at that moment).
The most amazing thing you can do for your child is to help build confidence and resilience from day one. You are their first and best role model. Make them feel special in a positive way, and be clear that Coeliac is not a disaster.
Learning from Day 1
As soon as diagnosis is confirmed, your child must become a gluten-avoider. They will need guidance about what they can and can’t eat (you won’t always be there). They will also need to learn how to read labels and how to ask questions to avoid hidden gluten and cross contamination. Get them involved in checking labels; talking about what foods they can/can’t eat; putting stickers on foods in the cupboard that are safe; cooking alongside you; etc. The earlier they can help in taking responsibility around what they eat, the safer they will be.
It is also important to explain Coeliac disease to others in the family and to siblings too. If they understand why gluten must be avoided, they can play an important part in helping maintain gluten-safety and in supporting the diagnosed child.
Most children will have had painful and difficult symptoms leading up to diagnosis. Once they start to feel the benefits of not eating gluten, they are more likely to understand its importance. Each child reacts differently to transition to a gluten free diet however. Whilst some will feel better within a few days, others may continue to have ill-health for months. For this latter group, the connection with health and being gluten free will be harder. But it remains ESSENTIAL that they keep to a 100% gluten free diet at all times.
Coeliac is a Genetic : Family Screening is Important
Coeliac is actually quite common. An estimated 1 in 100 people have the condition (Coeliac UK figures). But it is also a genetic autoimmune disease… And if a direct (blood-related) family member has Coeliac, the chances increase to 1 in 10 for other family members.
Given this, it is really important to get any siblings and yourselves as parents tested (whether there are symptoms or not). Coeliac can be silent. And it can also be triggered later in life (it doesn’t have to be present at birth). So an ‘all clear’ result should not be accepted as final. All family members should be aware and vigilant for symptoms, and as parents you need to keep an eye on any potential emerging health needs in a ‘non-coeliac’ sibling. Be aware also that false negative results are possible, particularly if gluten has already been removed from the family diet.
Children + Coeliac Support : you are not alone
Given the prevalence of Coeliac, you may already know someone else in the family with the same condition. This can be a really helpful, particularly if they are someone the child knows. Either way, share the family connection with your child and build a positive support link if possible.
Whether there are other Coeliacs in the family or not, remember you are not alone. Once diagnosed, you may be surprised to find you are constantly coming into contact with other people with the condition. We quickly discovered that other children in our friendship group, at school and in the families of colleagues, were diagnosed. As you start talking with people about your family diagnosis, any sense of aloneness will hopefully be replaced by a feeling that you have joined a new club. And this brings with it valuable support and experience.
Even if you can’t identify someone close to share with, there is plenty of support available. Health professionals (from specialist consultants to dieticians) are best-placed to advise on the medical and healing aspects post-diagnosis.
But there is also loads of support to be found in Facebook Groups and through connecting with organisations like Coeliac UK. Coeliac UK has a Member 2 Member programme which provides support to parents and carers of children recently diagnosed. And as an organisation they can offer lots of advice and guidance as you find your way. Whatever the age of your child, they have advice and guidance. I would absolutely recommend becoming a Coeliac UK member.
Coeliac + Children – Learn Together
Following Coeliac diagnosis, it is helpful to learn about how to manage the condition alongside your child… As your knowledge develops, share what you have learned with them, in language they can grasp. Whether it’s checking labels, managing menus, asking questions, understanding symptoms from accidentally eating gluten (you can be sure this will happen from time to time, however vigilant you are) or sharing their story with friends. Remember that your child will have Coeliac Disease for life. The earlier they can learn to deal with it openly, the more it will become a normal and integrated part of who they are.
If you are anxious about where to start in helping your child make sense of Coeliac, there are some great resources available and designed specifically for kids. When we joined Coeliac UK, Miss GF received a children’s book which explained Coeliac Disease in really simple terms. Having checked out the website, I see that the book has since been updated and is now called ‘The Belly Bunch – Adventures in Happy Tummies’. I also found a fantastic simple US-made video from GI Kids on YouTube. Check it out.
However you tackle it, Coeliac is not all bad and a positive attitude may help open new experiences. At GFHQ, the diagnosis led us to a whole new and exciting world of food exploration and ingredients. With that, came shared cooking, baking and learning together, which gave us a family focus and closeness around eating that we might not otherwise have had. Embrace what it offers as positively as you can.
Children with Coeliac can (and should) live a normal life. Coeliac should not be allowed to define who they are… ever! At Gluten Free Alchemist, we live by the motto ‘Positively Coeliac ~ Adventurously Gluten Free’… We hope you will share our confidence.
CHILDREN + COELIAC : POST-DIAGNOSIS HEALTH CHECKS
Once your child is diagnosed Coeliac, they will most likely be allocated paediatric oversight with a medical specialist who will see them regularly (at least once a year). They may also be offered appointments with a dietician.
Health checks are hugely important and should not be missed, however well you think you are doing. Your child’s nutrition and physical development is critical to their future health and welfare and medical monitoring is central to checking that everything is on track.
A good specialist will take time to get to know your child and will talk to them directly, to assess how well they are psychologically coping with their transition to gluten-freedom and beyond.
In addition to monitoring weight and height, your child is likely to have regular blood tests. Don’t skip the blood tests. Even if you think your child is eating and growing well, blood tests check micronutrient and vitamin levels, as well as retesting for the presence of harmful Coeliac antibodies. Coeliacs have particular difficulty with the absorption of Calcium and need extra vitamin D and sometimes iron and other vitamins and minerals.
Blood tests give a huge insight when there is a need for dietary or vitamin/mineral supplementation. This may be particularly important with the onset of puberty and adolescence. If you fail to pick up on potential deficiency issues early, your child may be at greater risk of osteoporosis, poor fertility, dental problems, etc. Where any deficiencies are identified through blood screening, your consultant and dietician will be able to advise on the best course of action.
If in any doubt about your child’s welfare, health and development, be sure to consult with your gastro-consultant, dietician or doctor as soon as possible.
This is so useful, thank you very much. I am really struggling to come to terms with my daughter’s diagnosis and you are right, it is not the end of the world.
I’m really pleased that it has been helpful. It can be really hard to manage the diagnosis and such a huge dietary transition, particularly for children. But the Coeliac and gluten free community is amazing and always there to help and support and being as positive as possible has really helped us through.
I don’t know how old your daughter is, but I’m always happy to listen and to try and help if you ever need any advice.