Finding out that our four-year-old daughter suffers from coeliac disease wasn’t the best day of our lives. While we were relieved it wasn’t something far, far, worse, the idea of our young girl having to live with coeliac for what we hope to be a very long and prosperous life was miserable.
I, as with most things, focused on the negatives. No cake, chocolate, or drinking beer when she’s with daddy at the football in a few years. No eating in nice restaurants. All the things she loved – were gone in a flash.
Course, none of this is correct. At this point, I hadn’t done any homework, and the only knowledge I had of coeliac disease was from a friend who came to my partner’s birthday party with a list of demands. It turns out they weren’t even demanding. But that’s coeliac. People think you’re being fussy or indulging in another fad.
Living without gluten isn’t a fad for our daughter, our friend, or the millions of others diagnosed with coeliac disease. Our daughter isn’t being trendy. She’s not trying to lose weight, fight infertility or reduce fatigue. She’s five. She wants to eat cake. She wants to share a sandwich with her little sister and eat like everyone else. She doesn’t want to be different.
But if she eats gluten, her body’s immune system attacks its own tissues. A crumb can give her stomach pains. More than that, and she’s likely to projectile vomit an hour or so later. If you’re at home, you deal with it. If you’re travelling along the motorway without a hard shoulder or service station for sixteen miles, you deal with it.
And you try your best to ensure your daughter isn’t made to feel at odds with every other child her age.
How common is coeliac disease?
Coeliac disease isn’t an allergy or food intolerance. It won’t get better over time. It affects 1 in 100 people, but according to Coeliac UK, only 36% of people who have the condition have been diagnosed – so nearly half a million people out there have coeliac disease but don’t yet know. It doesn’t mean they’re all throwing up on the M20. That only happened after our daughter had been gluten-free for a while.
Instead, symptoms can be mild or severe, such as:
Bloating
Diarrhoea
Nausea
Wind
Constipation
Tiredness
Ulcers
Sudden or unexpected weight loss
Anaemia.
Is there any lasting damage?
In short, yes. Malabsorption – where your body does not fully absorb nutrients – can lead to a deficiency of specific vitamins and minerals, such as vitamin D, leading to iron deficiency anaemia. People with coeliac disease may have low bone mineral density (BMD), and those bones could be more likely to break (Osteoporosis). At the same time, lymphoma and small bowel cancer are rare but could also be complications.
The risk of developing these types of cancers is no greater than that of the general population if someone with coeliac has been following a gluten-free diet for more than three years. Because my daughter was fortunate to have a mummy that spotted the symptoms very early, we hopefully only need to deal with the here and now. But that’s not easy either.
Nobody understands how serious cross-contamination is
Cross-contamination is, without question, the most misunderstood. All your hard work can be undone in an instant. Even a tiny amount of gluten can cause havoc. Already, we’ve all but given up on restaurants. Parties are a problem. Eat anywhere than the safety of your kitchen, and you’re playing with fire.
We’ve experienced a lot in a short space of time. I’ve been guilty myself of getting it wrong. Making a simple mistake. But when your daughter is bent over double with abdominal pains, her face in a bucket filled with regurgitated pasta because ‘the packaging looked the same,’ there’s no room for self-pity.
Now, every plate of food is a potential trip hazard. You spend every mealtime wiping down surfaces, washing hands, using twice as many pots and pans, different tubs of butter and spreads, separate chopping boards, toasters, baking trays, knives, and spoons, purposely placed with military precision in separate kitchen areas. You almost need a second kitchen.
It’s no surprise that friends don’t quite go to the same lengths as you if you visit. As with many things in life, it’s easy to be indifferent to something you don’t have to experience.
They don’t have to think about other children’s birthday parties to make sure they’ve got an identical party box, gluten-free food equivalents inside it, and a slice of gluten-free cake squashed in their changing bag, so their child doesn’t go to pieces when Anna and Elsa make yet another appearance on a birthday cake. As I said, my daughter is fortunate to have a mummy that thinks about these things.
Putting your trust in other people is the hardest part. Yorkshire puddings cannot sit alongside their gluten-free cousins. A stock cube can contain gluten. Ice cream may be gluten-free, but the wafer probably isn’t. Gluten-free cakes shouldn’t be sitting on the same stand or plate as those that aren’t. As for eating out, to date, hats off to Côte Brasserie and Pizza Hut for giving us reasons to be cheerful.
Our coeliac journey could help yours
With this blog, I intend to update you on our journey, the food our daughter – and ourselves – enjoy, places we’re almost comfortable eating at, and any mishaps to hopefully help and reassure anyone else who finds themselves in a similar position.
I’ll probably moan about the price we must pay for products with more sugar and sodium than any child needs. But I’ll also rave about another delicious cake baked using a recipe from Becky Excell. One day, I even hope to write a blog titled, ‘Top ten loaves of bread for coeliacs,’ but right now, I couldn’t even name one that’s within sight of average. My page, crumbs of comfort, is where you’ll eventually find all this stuff.
Even though my daughter has taken such a significant obstacle in her stride, the thought of not being able to enjoy simple pleasures many of us take for granted – such as a payday takeaway or a 99 Flake from the ice cream van – fills me with sadness. Another blood test fills me with dread. And while I take comfort that she won’t steal my beer when she’s fifteen, the notion of her managing a lifelong autoimmune condition overwhelms me sometimes.
To anyone already managing coeliac disease, please drop me a line with tips and advice. For anyone coming to terms with coeliac disease, welcome to the party, pal. Now, pass me another slice of gluten-free’s finest.
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