Looking for someone with LD diagnosed with coeliac disease as an adult

My adult son, D., who has a severe learning disability, was recently diagnosed with coeliac disease at the age of 40.

Coeliac disease is a condition where your immune system attacks your own tissues when you eat gluten. This damages your gut (small intestine) so your body cannot properly take in nutrients. See Coeliac disease - NHS

The only treatment is to go on a strictly gluten free diet. Gluten is found in wheat, rye and barley – so in bread, cakes, biscuits etc. However, oats can be contaminated with gluten if they are grown in a field which has previously had wheat, rye or barley growing in it. Also, many products are produced in factories that process things containing wheat, rye or barley – so a frustrating number of products say on them something like “may contain traces of gluten” - which means you can’t buy them!

Coeliac disease tends to run in families. However, it is also more common in people with epilepsy, type 1 diabetes and Downs Syndrome. About 1:100 people have coeliac disease and it is thought that there are many more who are undiagnosed or misdiagnosed. Coeliac UK Home - Coeliac UK has a lot of very useful information about the condition.

Of course, D does not understand anything about this diagnosis or about his new diet! So, the staff team are having to learn fast so that they can make sure he has the right foods and prevent him eating foods containing gluten.

If there are any other parents who have a son or daughter with coeliac disease who was diagnosed as an adult I would love to hear from them and find out how they/staff support have managed to keep them from consuming foods containing gluten. Fortunately, my son lives in a flat with his own kitchen, so there is no danger of cross contamination. It is so much more difficult if you share a kitchen.

Kind regards,

Rosemary Burslem