Our son James aged 7 was diagnosed with coeliac disease 6 months ago. Leading up to his diagnosis was a very challenging time. In early 2021 he became more lethargic and pale, irritable, had less of an appetite and looked thin, whilst having a bloated tummy and occasional loose bowels. Because James is also on the autism spectrum it was difficult to gauge how he was feeling, and we just assumed his increasingly agitated behaviour and lack of interest in food were related to the autism. In the back of my mind, I felt that something wasn’t right and one Monday morning I saw that he wasn’t looking at all well and I took him to the GP.
The GP was very thorough and concerned about James’ obvious pallor and lethargy and ordered stool and blood tests. Interestingly the results showed both coeliac disease (and associated low iron count) and giardia! We won’t ever know which came first, but I am glad that I trusted my instincts and took him to the GP that day. James had a biopsy to confirm the coeliac disease diagnosis and we immediately began the gluten-free diet.
It has been wonderful watching him gain energy back and colour in his cheeks. He also seems to have stronger immunity against the many viral chest colds he would get as a younger boy. We have had our challenges, however, especially around school lunches and his dislike for the GF bread! He avoids certain textures which also adds to the stress - think soggy fruit! Eating out is pretty much a no-go now. We had one recent experience at a cafe where there was a separate gluten free labelled cabinet which I thought was great. I enquired about the food and risk of contamination and was informed it was all ok. As James was about to bite into the muffin he had chosen- the cafe server came to us and said that the muffin would “most definitely contain gluten!!” I let him eat it anyway...I couldn’t face the fallout!!
It really bugs me and always will I’m sure, that food can be labelled gluten free when it is not...it’s not just about the flour! What we are thankful for is the vast number of recipes we can try and the GF-readymade products that are available. My husband is amazing at whipping up a brownie or cookies at short notice and everyone in the family is getting used to our regular weekly meal of GF bean nachos and salad! As a family we have all learned to compromise and negotiate around food choices, so James feels included, and his siblings don’t feel excluded! James seems to understand that the “gluten food” does not make him feel good and he has never kicked up a major fuss like I feared he would.
Kids can be quite adaptable, and James has certainly surprised us along the way coping with doctor’s visits, blood tests, a biopsy, and a mother grumbling about why a gluten free burger is $5 more than a “normal” one!
The article was written by Pam Heaton (mum of James Heaton) to support Coeliac Awareness Week.