Advice for teens
The symptoms of coeliac disease may interfere with school or your social life, particularly during the gluten challenge, or early on after being diagnosed, when you are still adjusting to eating gluten-free. Symptoms like tiredness, fatigue, headaches, and abdominal or joint pain can make it difficult to concentrate on your schoolwork, and gastrointestinal symptoms or nausea may send you to the loo at frequently or at inopportune times.
It can help to let teachers and school administrators know that you have coeliac disease they can help support you as much as possible. Your doctor can help with this by writing a letter to your teachers/school explaining what your condition is and the ways it might impact you. Most schools have a disability coordinator that can communicate with teachers on your behalf. Getting ‘glutened’ can cause unexpected symptoms and your disability coordinator can work with your teachers to manage your schoolwork if this happens.
Despite being a very widespread health condition, many people don’t know much about coeliac disease. It can help to let your friends know what your condition is and how it impacts you so that they have a better idea of what you are going through. Discussing your condition with friends is also a good opportunity to dispel any myths or misconceptions that they may have around coeliac disease (e.g. “a little gluten is okay!”). The symptoms of coeliac disease can come on unexpectedly, so keeping the condition a secret can be stressful and exhausting –feeling like you don’t have to hide it can make a big difference.
The symptoms of coeliac may feel embarrassing at times and you might feel hesitant about discussing some symptoms. You may prefer instead to avoid the symptom specifics and just describe symptoms in the general sense (e.g. “getting glutened caused an immune reaction that affects my digestion and makes me feel really sick”). There are also plenty of excellent online resources available that you can direct your friends to if you want them to better understand your condition but don’t want to talk about your symptoms too much. Support groups for young people with chronic conditions are a great way to find other young people going through the same thing.
Transitioning from a paediatric doctor to an adult doctor
Depending on your age and time of diagnosis, you may at some point need to transition from a paediatric (i.e. child) to an adult doctor. This is not always easy, as you may have built up a relationship with your paediatric doctor over many years. The dynamic between you and your doctor changes after transitioning to adult care. You will find that your doctor’s enquiries are no longer directed at your parents but at you. You will also likely take a bigger role in managing your appointments and medications. If you are unsure or worried about transitioning to adult care, then discuss this with your doctor. They can help make the process easier and expand your knowledge regarding your medical care, making you feel more confident about taking a leading role in your treatment.
Body image issues
Coeliac disease can feel embarrassing at times. Aside from having to say no to food that is offered to you, or having to eat differently around your friends, the signs and symptoms (e.g. diarrhoea, vomiting, bloating, dermatitis herpetiformis) may cause you to feel anxious about your body and how it is perceived by others. It is important to discuss these feelings with someone you trust, often taking to a close friend or family member is enough to put things into perspective. If your body image concerns persist, speak to your doctor.
Some coeliac myths:
- A tiny bit of gluten will not hurt!
- It takes only 50mg of gluten to cause villous atrophy –about 1/100th of a slice of white bread!
- Everybody that has coeliac disease gets symptoms
- The type and severity of symptoms varies considerably between people. You can be exposed to gluten and damage your small bowel without experiencing any symptoms.
- Not many people have coeliac disease
- Coeliac disease is very common, but many people do not know they have it. As many as 1 in 70 people have the condition.