Coeliac / Diagnosis / Family

Challenging times

First post in a while! It’s been a funny few weeks, adjusting to life in the lockdown. In general, things are ok chez Steeliac – we’re working from home and attempting to home-school our boys, as well as trying to keep things as normal as we can. I hope anybody reading this is coping ok and not impacted too much by the difficult side of the coronavirus crisis.

We are lucky to have a garden and that we’ve been able to spend time in our local woods appreciating nature – this last week we’ve seen some spectacular bluebells and witnessed herons land on their treetop nests. These pleasures help to offset some of the trickier aspects of lockdown life, such as not being able to get hold of gluten free flour due to everyone’s new obsession with baking! And of course, we’ve never been so aware of the value of school…

We have, however, had a bit of significant news recently, which is that my eldest has been officially diagnosed with Coeliac disease.

It’s taken several years, a lot of persistence and a bit of stress to get this diagnosis. It was made particularly difficult because his blood tests came back negative. Although only one of three clinical tests for CD, the blood antibody tests are offered by GPs so are generally the first hurdle to securing a diagnosis. So with negative blood results and various attempts over several years, it took some persuasion to get the opportunity to try the other two tests.

Thankfully, we eventually got ourselves in front of a brilliant consultant at the Sheffield Children’s Hospital, who, presented with the history and the symptoms, put us on the path to diagnosis. First a genetic test, and subsequently the dreaded gastroscopy, under a general anaesthetic. Due to the lockdown, we received the eventual diagnosis in a short phone consultation with my mobile on loudspeaker in my bedroom.

We are, of course, left with very mixed feelings. I’m so thankful that we finally have the answer, and that we can make him better with food, but I’m devastated for my boy about the parts of this that will challenge, upset and test him in the years to come.

But I’m also pleased I’ve had a head start on this and I know what to do! And I’m very hopeful that during our lifetimes, the research will provide us with other options than just the diet.

On a positive note, I’m looking forward to reading and sharing his forthcoming blog posts and musings…

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