When crumbs became the bane of my life…Woody has coeliac disease

First published in the Western Morning News, November, 2017

Journalist Fran McElhone’s two-year-old son Woody has recently been diagnosed with coeliac disease, an auto-immune disease affecting one in a hundred people, whereby the consumption of gluten, found in wheat, barley and rye, damages the lining of the gut, preventing the absorption of nutrients into the body which, if untreated, can result in stomach pain, diarrhoea, skin rash, vitamin deficiency, and long term, stunted growth, infertility and osteoporosis. The only treatment is a gluten free diet.

When my extended family visited over half term, we went to the pub; a fantastic olde worlde place with a chalk board menu full of sumptuous homemade dishes including fish pie, steak and ale pie, lamb stew, lasagne, sausages, treacle sponge pudding and apple crumble, which come in huge indulgent portions.

As we sat there stuffing our pies and fish and chips into our mouths, gravy escaping everywhere, Woody, whose favourite food in the world is fish and chips, tucked in to cold ham, mash and peas. It was very nice cold ham, mash and peas, but my heart could have broken as he looked over at our chunky chips and his cousin’s crispy golden fish, without a sound.

Six months ago Woody started vomiting violently. Over the ensuing months, his bloated belly seemed to get more swollen than ever, sometimes shockingly so; a friend gasped involuntarily when I showed her a photo of him. He went off his food and stopped eating breakfast completely (it was almost as if he knew…).

Every day he complained of “tummy sore”. He used to be bang on average for height, but was now on the 0.4th percentile. And his most defining trait, his high octane rambunctiousness (he ran a mile at 16-months and was always the one doing laps when we met up with friends, while his peers sat quietly in their high chairs) all but disappeared.

Soon after waking up in the morning, he would ask to go back to bed until nursery. And then it would be “bed, bed” as soon as he got home. And he would refuse to walk anywhere; at times we thought he was being stubborn (he’s a Taurus), at others, plain lazy.

But although this all seems so blatant now, these things seemed more subtle at the time. Other than the random vomiting, which had no rhyme or reason, there was an answer to each element: rounded bellies are often characteristic of little kids; he was tired because of his busy days at nursery or running around with me; he stopped eating breakfast because he was drinking more milk in the morning (or was this the other way round?).

But there was no excuse for the vomiting or the “tummy sore”. I knew there was something wrong with him and no one was going to tell me otherwise. I just hadn’t linked everything together.

I trusted my “mother instinct” and several visits to the GP later, who is wonderful and took us with the utmost seriousness, but because Woody went in with a smile and a giggle buoyed with enthusiasm for the surgery’s train set, it was only on the third occasion that he referred Woody to paediatricians at the Royal Devon & Exeter Hospital.  As we waited for his appointment, just over three weeks away, the vomiting ramped up a notch, happening daily.

Despite his suffering, our sweet little boy’s sunny nature was only ever dulled, and he roared with laughter when the consultant paediatrician checked his belly over. Within days, Woody’s blood results “unequivocally” showed he had coeliac disease. He was also severely anaemic and deficient in folic acid.

So he had never been lazy at all. And all those times I tried to make him walk and he started crying until I gave in and carried him, were actually because he was really poorly.

We were told we must attend an appointment with another consultant and a dietician that day at which they said Woody must start a gluten free diet – the only remedy – immediately, and that it was “imperative” that he didn’t so much as ingest a crumb ever again, so we must use a separate toaster, chopping board, butter dish, sieve and different oil for chips.

Crumbs fast became the bane of my life.

A month on, and we now know that Woody had become a shadow of himself. His face and thighs are gorgeously chubby, his duckling fluff hair has thickened, and most importantly, he is an inexhaustible whirlwind of energy. He never throws up, never complains of “tummy sore”, never wants to sit still, and his balloon belly is finally deflating. We have our little boy back.

Quick fact check: gluten is in wheat, barley and rye, and wheat, barley and rye is in practically everything bar fruit and veg and rice based products. Think flour, bread, pasta, pizza, pastry, cereals, biscuits, crackers, coating like breadcrumbs and batter, most processed vegetarian products, gravy and sauces, stuffing, not to mention beer.

If you have a fussy toddler, it’s a steep learning curve, and if you have a foodie for a toddler like Woody, it’s just as steep.

Woody’s nursery has been wonderfully supportive, and because he’s under 18, Woody is lucky to get some food free on prescription (following the Department of Health’s consultation this year, adult prescriptions are under review by the country’s clinical commissioning groups, with some, including Devon, Cornwall and Somerset, already stopping them).

So, without meaning to be too negative, there are alternatives for the basics out there and you can’t really tell the difference between the pasta, cakes, biscuits and crackers (other than their price tags; gluten free bread is around five times more pricey).

But the gluten free range is tiny compared to the choices the rest of us take for granted. And Woody hasn’t had a sandwich in over a month now because a lot of the bread is like wallpaper paste, other than M&S bread, thank you M&S, yours is pretty decent (for toast anyway).

In reality, the practical impact hasn’t been as bad as the emotional impact. Although we are utterly grateful his diagnosis wasn’t something far worse, and that all this is manageable, it has made me deeply sad for my son and the first few visits to the supermarket I stood crying in the freezer aisle (no, not at the price). And I’m not sure I’ll ever not feel guilty about tucking in to a nice bit of fresh bread (etc. etc.).

Because no one can tell me Woody isn’t missing out, or isn’t going to miss out, like at kids’ parties when he can’t eat the cake (and the rest), or when he’s a teenager and his mates are grabbing an impromptu burger or piece of pizza, but he can’t, or when we go to the pub and we’re told, sorry, the chips are cooked in the same fryer as the fish batter.

Efforts are being made by food and drink retailers, and this is greatly appreciated; the handful of publicans I’ve spoken to were all aware of cross contamination issues and said they would help to find Woody something he could eat on the menu.

But considering one per cent of the population are coeliacs, while countless others are gluten intolerant, the food and drink sector has a long way to go.

A survey conducted last year by Coeliac UK, the UK’s leading voice on coeliac disease, revealed that more than 90 per cent of people on a gluten free diet, ate out over a four week period, with over half saying their experience had been “frustrating” and a quarter saying they had been “glutened”. Because for a coelic, you are literally putting your health in the hands of those people preparing and serving your food every time you eat out.

In May, the charity launched its Gluten Freevolution campaign to highlight the growing demand for improved safety, choice and availability when eating out and to encourage both private and public sector caterers to provide great gluten free food that is safe from cross contamination.

The Gluten Freevolution focuses on improving the levels of understanding amongst caterers as well as increasing the skills and knowledge of both front and back of house staff in preparing and serving gluten free food.

Guidance for the catering industry which is supported by the Food Standards Agency (FSA) is available to download at: www.coeliac.org.uk/glutenfreevolution

I hope it won’t be too long that Woody will be able to enjoy his favourite fish and chip supper at his parents’ favourite pub. Maybe by the time he’s 18, he’ll be able to enjoy a pint with us there too.

Ends

FACT FILE

  • One in a hundred people in the UK and Europe has coeliac disease but only around 24 per cent of those are currently diagnosed.
  • Coeliac disease is not a food allergy or an intolerance but an autoimmune disease caused by a reaction to gluten.
  • Damage to the gut lining occurs when someone with coeliac disease eats gluten.
  • The average length of time taken for someone to be diagnosed with the disease from the onset of symptoms is 13 years.
  • There is no cure for the condition. The only treatment is a strict gluten free diet for life.
  • If a gluten free diet is not followed, the disease can lead to nutritional deficiencies and complications such as osteoporosis, cancer of the small bowel and unexplained infertility problems.
  • Gluten is a protein found in the grains wheat, rye and barley. Some people with coeliac disease are also sensitive to oats.
  • If someone with coeliac disease accidentally eats gluten, they are likely to be unwell within a few hours. Symptoms can be varied but include severe diarrhoea and vomiting and can last several days.
  • Gluten free food can be contaminated by food that contains gluten during preparation.
  • Coeliac disease is a genetic condition.
  • One in four people with coeliac disease have previously been treated for Irritable Bowel Syndrome (IBS) prior to diagnosis of coeliac disease, so people with IBS should be tested for coeliac disease.
  • Dermatitis herpetiformis (DH) is the skin presentation of coeliac disease.
  • People with coeliac disease cannot join the armed forces.
  • Coeliac UK is the national charity for people with coeliac disease and has a wealth of information for all those following a gluten free diet including recipes, helpline and a regular magazine.

www.coeliac.org.uk

 

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