Coeliac Disease and Down Syndrome

Today marks the beginning of Coeliac UK’s awareness week, with International Coeliac day on Saturday 16th May.  Did you know that coeliac disease is more common in people with Down Syndrome? Today we thought we’d raise some awareness about coeliac disease and share some advice from our WCAT families who have gone gluten free.  We’ll be sharing their stories over our social media pages throughout the week to celebrate our #gfcommunity.

What is coeliac disease?

Alfie baking!

Coeliac disease is an autoimmune disease, eating gluten causes the body to attack its own cells causing damage to the gut and an inability to absorb nutrients.  The symptoms can range from mild to severe and most commonly are gut related – bloating, diarrhoea, constipation, wind and nausea.  Other symptoms can include tiredness, irritability, mouth ulcers, anaemia and faltering growth or weight loss. 

Coeliac disease and Down Syndrome

Coeliac disease is more common in people with Down Syndrome.  In the general population coeliac disease is under diagnosed but thought to affect about 1% of people.  Studies have shown that it can affect 5-10% of people with Down Syndrome.  Because of this, the Down Syndrome Association recommend that people with DS are screened for coeliac disease even if showing mild signs.  If you are concerned about any symptoms that might indicate Coeliac disease, speak to your GP or paediatrician, it is important not to cut gluten out of your diet prior to a diagnosis as it will affect your results. 

How is coeliac disease treated?

Coeliac disease is managed by following a gluten free diet.  This means eliminating wheat, barley and rye from the diet.  Some people are sensitive to oats too, a dietician will support you through any changes you need to make. 

We asked our WCAT families to share their tips about going gluten free and some favourite recipes, here’s what they had to say:

  • First off, make sure people take you seriously, this is a real illness. Jen
  • Don’t worry, nowadays the range of gluten free options available in the shops is great, meaning if like me, you’re not a baker, then you don’t have to panic! Sarah
  • I joined some of the Coeliac Facebook groups and found them really useful.  They often do posts where everyone posts their favourite gluten free items and you get lots of ideas.  I’ve also got a gluten free app on my phone – anything I’m unsure about I just scan.  Cheryl
  • Making the transition can feel daunting, for the first shop we found making a list of everything she eats, working out what we needed to swap and looking it up online prior to shopping was helpful (especially in the current climate) Becky
  • Cassava flour is great as a gluten free flour and is 1:1 in baking.  Also cashew/almond flour make great pancakes! Hayley
  • My Alfie is a baker and GF.  I have found the GF self raising flour works just as well following my usual recipes I used to use for baking. Tiffanie
  • With the 2 kids, I find it easier for them to both have gluten free snacks in particular, so I’m not hovering if one drops/shares it.  Then with my non coeliac I’ll give her gluten at a meal time where I can control who is eating what more easily! Pete
  • Birthday parties and play dates can be a tricky one, particularly as a lot of kids party foods contain gluten!  We always speak to the host before hand…offering to send a party pack of food along with our child (including cake!) and providing enough to share was well received and made things easier for everyone, and avoided feeling left out.  Louise
  • Beware cross contamination! Have a separate bread board and use toaster bags, a separate toaster or clean grill pan to make gluten free toast. We thought we could avoid contaminating condiments with breadcrumbs by using a separate knife but in our house that hasn’t been practical – I’d blame the kids but my husband is the worst! In the end we found it easier to just have separate butter and jam (the things that are used daily).  Lisa

Some of our favourite recipes

  • The recipe below just switching the plain flour for Doves Farm Gluten Free plain flour is amazing! Never fails! Tania

https://www.bbcgoodfood.com/recipes/best-ever-chocolate-brownies-recipe?fbclid=IwAR1jpUiZGX6Q26GISRpFBFCcBzLHVPbLWrbhcRoEc6tcnJjtkNueuQLXmWE

  • Almond flour waffles made with cheese! Tania

https://www.wholesomeyum.com/keto-chaffles-recipe/

  • The kids love these, convenient as I can make a batch and freeze them – from a non baker – they are also fairly foolproof! Lots of fab recipes on this site. Becky

https://www.glutenfree4kids.com/?q=content/cheesey-snakes

Support

Coeliac UK is dedicated to helping people live well gluten free – as a member you receive a food and drink guide, the gf app, access to their helpline amongst other things.

https://www.coeliac.org.uk/home/

The Down Syndrome Association also has some info about Coeliac disease and Down Syndrome

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