Discovering Your Child Is Coeliac
(This is the second 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).
It may be that your child has been scarily ill for many years before diagnosis or (as with us) you may be really really lucky and have a doctor who asks the right questions at the right time and within a matter of weeks Coeliac is confirmed. Either way, when you discover your child is Coeliac you are likely to have a whole plethora of emotions and questions that tumble forth :
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?
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?
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? This has massive implications 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?
Feelings of Impotence – Not knowing what to do next or where to go for help. Not knowing how to manage the condition.
Relief – Thank goodness we have a diagnosis and we can now 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, groups and buddies.
When Miss GF was diagnosed (and after a brief few hours of distress), I grabbed the computer and frantically googled everything I could to help get my head around what Coeliac was, whether there was a cure, how it would change her life and ours, and trying to make sense of what we now couldn’t eat. This was followed by the equally frantic reading of as many books as I could get my hands on, seeking wisdom from every page. That was all long before I had even considered looking at a blog, let alone blogging myself and before I discovered that I too was directly affected by the Coeliac legacy passed down from my father’s side of the family.
Sadly there is currently no ‘cure’, but the great news is that for those fortunate enough to be diagnosed with only Coeliac, the treatment is simple… abstain from eating gluten. For life! Actually, I 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 (although Miss GF makes a total drama out of a bi-annual blood test), and if we make a slight mistake, she may get sick, but she will recover and it won’t actually kill her. How fantastically blessed we are.
As parents, that’s a huge relief… but little people don’t always have the capacity to understand and not being able to share their beloved pizza/cake/spaghetti bolognese/packet of biscuits, etc may to them, be a full-on disaster. So you need to be strong and positive….. really positive. The message you give to your child immediately after you have worked out what it means, must be clear, factual and like ‘this is really not a big deal’… Your child needs 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). You need to build confidence and resilience from day one and you are their first and best role model. Make them feel special in a positive way, but be clear that Coeliac is not a disaster.
You Are Not Alone :
Coeliac is actually quite common, with an estimated 1 in 100 people who have the condition (Coeliac UK figures). Given that Coeliac is a condition that has genetic links (if a direct family member has it, the chances increase to 1 in 10), it may well be that you know someone else in the family who has already got a diagnosis. This can be really helpful. Share that connection with your child and build a positive support link if possible.
Given the genetic connections, it is also really important to get any siblings and yourselves as parents tested. Be aware however, that false negative results are possible and also that Coeliac Disease can be triggered later in life (it doesn’t have to be present at birth). An ‘all clear’ result should never be a total block on listening to your body for symptoms, or being aware of the potential emerging health needs in a ‘non-coeliac’ sibling.
Whether there are other Coeliacs in the family or not, remember you are not alone. Once diagnosed, you will probably be surprised to find that you are constantly coming into contact with other adults and children with the condition. We quickly discovered that other children both 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 quickly be replaced by a feeling that you have joined a new club, which brings with it valuable support and experience.
It is helpful to learn alongside your child… As you develop a greater understanding of how to manage the condition, share your knowledge with your child 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 their friends. Remember that your child will have this for life and 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 book especially written for children, 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 simple US-made video from GI Kids on YouTube, which you can find here.
However you tackle it, Coeliac is not all bad and a positive attitude towards it may help open new experiences. At GFHQ, the diagnosis lead us to a whole new and exciting world of food exploration and ingredients and with that, shared cooking, baking and learning together, which has given us a family focus and closeness around eating that we might not otherwise have had. Embrace what it offers as positively as you can.
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 much you think you know what 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.
In addition to monitoring weight and height, your child is likely to be called for regular blood tests (the frequency for each individual to be discussed with their health consultant) and 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.
Don’t skip the blood tests. Even though you may think your child is eating and growing well, the tests are deigned to measure the levels of a whole range of nutrients in the blood (in addition to any continued presence of the Coeliac antibody). 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, which may be particularly important with the onset of puberty. 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.