If you, your partner, or one of your kids has coeliac disease, you may be worried about the rest of your family. Here’s what you need to know…
The odds are in your favour!
If your child’s parent or sibling has coeliac disease, there’s a 10% chance that they’ll develop it at some stage. Of course, this means there’s a 90% chance that they won’t ever develop it. The risk is less than 10% if your child’s grandparent, aunt, uncle or half-sibling has coeliac disease, but gets higher if more than one family member has it. In short, there’s no need to worry – instead, know the facts, control what you can and have a plan in place to catch coeliac disease early should it develop.
Monitoring ‘at risk’, symptom free children
If your child is symptom free and growing normally, it’s recommended that you wait until they’re four years of age to carry out initial coeliac screening1. The antibody blood tests are more accurate from the age of four and it can be difficult to justify a blood test earlier if your child is symptom free. If the antibody blood test is normal (negative) at age four, consider repeating this test in future years (e.g. every two years during your child’s growing years) to ensure a diagnosis isn’t missed before their adolescent growth spurt. You might like to consider finding out whether your child carries the ‘coeliac genes’.
Genetic testing for coeliac disease
I’ve written an article all about gene testing just for you. You can find it here. Remember: genetic testing for coeliac disease is not a useful predictor of who will develop coeliac disease, but it is a useful predictor of who won’t.
Introducing gluten to babies
There are no known links between the age that gluten is introduced and coeliac disease development. There’s no evidence to suggest that early (at four months) or late (at six, or even 12 months) introduction of gluten has any effect1,2. The best advice available is to treat your child like any other and follow the national feeding guidelines.
How much gluten to feed pre-schoolers
Coeliac Australia advises that “there is insufficient evidence to define a ‘safe’ or ‘unsafe’ level of gluten that infants can be fed. Furthermore, there is no evidence that avoiding gluten altogether is helpful; this approach is not recommended as it could unnecessarily restrict the intake of important nutrients necessary for growth and development in childhood”.
However, one observational study of more than 6000 children in Sweden, Finland, Germany and the US suggests that the amount of gluten a child eats before the age of five could play a role in the development of coeliac disease among genetically predisposed children3. In this study, higher gluten intake increased the risk of developing the condition. Based on this, Stefano Guandalini, a professor at the University of Chicago who focuses on paediatric gastroenterology, has developed new recommendations4 for children who either:
- have a parent or a sibling with coeliac disease
- carry either the DQ2.5 or DQ8 genes.
For these kids, he recommends that gluten should be introduced as per the national feeding guidelines, but that during the first two years, less than 5g per day of gluten should be given (on average), i.e. around one slice of bread or ½ cup of pasta. The approximate amounts of gluten in foods can be found here. For now, we wait until further research supports or rejects this finding, but perhaps a conscious shift away from the typical Kiwi sandwich (two slices of bread, crusts off!) might be a safe bet for your genetically ‘at risk’ child’s first few years. Don’t forget to ensure that their diet is as nutritionally balanced and unprocessed as possible.
When your child shows symptoms of coeliac disease
If there’s coeliac disease in your child’s family, they’re eating solids and they’re showing symptoms that could be related, it’s time to visit your GP for testing. Remember that coeliac disease symptoms aren’t always gut-related. If the antibody tests come back negative, this tells you that they’re unlikely to currently have coeliac disease, but could still develop it in the future.
A negative coeliac test, but persisting symptoms
When your child has all the symptoms of coeliac disease but tests negative, you can find yourself in no-man’s land. I’ve been there and it was pretty stressful! Here’s what I’ve learnt:
- It pays to visit your GP and ask them to conduct a full health check before altering your child’s diet.
- There are multiple causes of coeliac-like symptoms in children. Try to keep an open mind as you work through all possible causes in a careful process of elimination.
- Seek advice! Going it alone can be mentally exhausting. I can help you get to the bottom of your child’s relationship with gluten once and for all — no matter where in New Zealand you live. Get in touch.
- Consider non-coeliac gluten sensitivity and gluten intolerance. Non-coeliac gluten sensitivity is a controversial topic, but one that I have personal experience with. It mimics coeliac disease in its symptoms and is thought to occur more frequently in first-degree relatives of people with coeliac disease. Gluten intolerance is thought to affect one in 10 New Zealanders and primarily causes gut symptoms. There are no medical tests with which to diagnose either condition (yet!).
- If gluten is a suspected trigger, a gluten-elimination trial and re-challenge can be helpful. Whatever you do, do this once and do it correctly or you won’t be any further ahead. And please don’t re-challenge gluten with a bite of wheat bread! Get in touch for more information.
- It may not be possible to get a specific diagnosis. Having a well child takes priority.
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1Al-Toma A, Volta U, Auricchio R, et al. European Society for the Study of Coeliac Disease (ESsCD) guideline for coeliac disease and other gluten-related disorders. United European Gastroenterol J. 2019;7(5):583-613. doi:10.1177/2050640619844125. Read more here.
2Aronsson CA, Lee HS, Liu E, et al. Age at gluten introduction and risk of celiac disease. Pediatrics. 2015;135(2):239-245. doi:10.1542/peds.2014-1787. Read more here.
3Carin Andrén Aronsson, Hye-Seung Lee, Elin M. Hård af Segerstad, Ulla Uusitalo, Jimin Yang, Sibylle Koletzko, Edwin Liu, Kalle Kurppa, Polly J. Bingley, Jorma Toppari, Anette G. Ziegler, Jin-Xiong She, William A. Hagopian, Marian Rewers, Beena Akolkar, Jeffrey P. Krischer, Suvi M. Virtanen, Jill M. Norris, Daniel Agardh. Association of Gluten Intake During the First 5 Years of Life With Incidence of Celiac Disease Autoimmunity and Celiac Disease Among Children at Increased Risk. JAMA, 2019; 322 (6): 514 DOI: 10.1001/jama.2019.10329.
4 The University of Chicago Celiac Disease Center publication. Read more here.