IT IS OFFICIALLY official – wheat is back on the menu.
It’s a massive step forward. Yet right at this minute it also feels like a big step back. Why? Because we have to go right back to the drawing board to discover what is and isn’t safe for Sid to eat.
I CAN SCARCELY believe it but we are on Day Nine of a taste challenge for wheat and a helping of two entire Weetabix for breakfast has heralded not even the whisper of a reaction.
Could he have outgrown his wheat allergy?
To be fair, Sidney’s allergist has long been of the opinion that he would lose this one sooner or later – I think he cited an 80 per cent probability – and he was surprised when our last oral challenge a year and a half ago saw Sid react to a tablespoon of Weetabix.
If I’m totally honest I’m a bit discombobulated. I’m not sure I quite know what to do next. We’re so well-versed in the art of avoiding wheat that it all feels a bit, well, odd. We’re almost institutionalised into the world of wheat free – I’m an expert at knowing which brands of pasta, bread and biscuits to look for. If I can go shopping for actual proper wheat versions I think I might flounder at the choice.
Of course we’re delighted, don’t get me wrong. It’s opening up a whole new realm of shopping and cooking and eating. I keep thinking of the things that, finally, Sidney can have: cous cous, for instance. Bulgar wheat. Actual proper pizza. Home-made bread (try as I might I’ve never mastered the art of gluten free bread baking). Surely making cakes will be easier, now? Ditto pastry. I think we can probably buy filo. We can all sit down together for a plate of pasta – just what I hankered for all those months ago when we first learned of his allergies.
On the other hand, I now almost feel like a fraud, as if losing the wheat allergy disqualifies us from proper allergic status. I wholeheartedly recommend starting off with as many infant allergies as possible – it means if you shed one or two along the way it feels like you’re barely having to deal with anything at all.
Of course, this is nonsense. We still boast severe, potentially anaphylactic, allergies to egg, nuts and sesame, and chickpeas, lentils and peas remain firmly on the list. Even if wheat is now possible we can’t risk buying fresh bread from our local bakery or eating it when out, because of the risk of cross contamination with eggs, seeds or nuts. And if we should ever pluck up the courage to order pizza or pasta from a restaurant we would have to preface any visit with a battery of questions about cross contamination, cleaning procedures, ingredients and more.
The thing is, wheat was probably one of the easiest of all the allergies to deal with. Not only has Sidney thankfully never been allergic to wheat by touch, only ingestion, but gluten free is such big business these days that it’s been the least of our concerns.
Then there’s the fact that many of the companies that make gluten free foods (Dove’s Farm for flour and biscuits, Nairn’s for porridge, Orgran for pastas, Dietary Specials for breads, Venice Bakery for pizzas) are all mega clued up when it comes to egg, nut and sesame allergy so the products are safe all round. Will ‘normal’ wheat products have such stringent processes in place?
Seriously, allergies can make you quite, quite nuts.
Almost a year ago now I wrote a post about looming changes to the laws on food allergy labelling.
New EU regulations set to come into effect in December 2014 state that allergen information should be extended to non-prepacked foods – that means that restaurants, delis, cafes etc will be made to comply.
The catch is, however, that it is up to each individual European country to decide exactly how to implement the proposals. And I for one am desperate to avoid the same mess we’re in with allergen labelling in shops: that is, the manufacturers slapping on ‘may contain’ warnings willy-nilly without ever getting to grips with the issues of cross-contamination and actually doing something practical and helpful about it. Continue reading “Finally – have your say (though it may change jack shit)”
I’VE BEEN very remiss in blogging about these but the food allergy parents’ support group is trundling on happily, with different get-togethers happening in different parts of London. The next two are in Ealing and at St Mary’s Hospital in Paddington, but there are plans for another north London one, hopefully in November. I’ll keep you posted. Continue reading “Support group dates…”
(wheat free, gluten free, egg free, nut free, *dairy free)
TWO of my favourite new finds at the Allergy & Free From Show came from the delightful husband and wife team behind Drossa, a London-based online shop specialising in high quality gluten free foods.
They sell Farabella Italian potato gnocchi and ‘acini di pepe’ – tiny little pasta beads that make a fine fill-in for couscous or bulgar wheat. Continue reading “Farabella free from gnocchi & ‘couscous’”
Well, no, not him – but am v happy to reveal that Dr Tammy Rothenberg, a consultant paediatrician with a specialist interest in allergies will be the resident expert at the food allergy parent support group in Stoke Newington on Saturday 30 June. Dr R – formerly of St Mary’s Hospital, Paddington and now the Homerton, Hackney – will be there to to answer all your burning questions about childhood food allergy. Plus there will be some great allergy friendly recipes to take home, as well as a chance just to catch up and chat with parents in the same boat.
Please follow this link for details and info on how to come along… Would love to see as many food allergy parents from the area as we can squeeze in!
So, I’ve just come back from my second day at the Allergy and Free From Show at Olympia. The last time I was there was 15 years ago for Erotica ’97 – my boyfriend at the time worked for a porn mag, I’m afraid. How things change, eh?
I’m gearing up for a bit of a blog rant about the show, so I’ll save that for now. But this afternoon I came across the Kinnerton confectionery stall and, for the first time, their Luxury Belgian Milk Chocolate bars.
Unfortunately, just as I find them it seems they’re being taken away. The egg, nut and gluten free choc tastes delicious – but it’s now been discontinued. Apparently stockists (i.e. the big supermarkets) weren’t displaying them where people could find them. As a result, nobody knew they existed, sales were low and they’ve been forced to ditch the line. Which is such a shame as these are perfect for the very many kids and adults with nut, egg and gluten allergies out there.
I bulk bought as many as I could reasonably see us eating by the ‘best before’ in Feb 2013 – but I hereby attempt to mount a campaign to Bring the Chocolate Back. They tell me if enough people lobby them for the bars’ return they will consider reviving them. There are so few allergy friendly chocolates out there – particularly nut allergy friendly – that I’d be overjoyed to have it them production. So I’m starting a petition – will you join me by signing it here?
When your child is diagnosed with a string of severe food allergies, it comes as a proper thwack in the guts.
I remember leaving our first paediatric allergy appointment, where skin prick tests showed Sidney was allergic to a catalogue of stuff, including the dreaded peanut, and crying in the car on the way home – well, until my crying set Sid off and I pulled myself together sharpish.
Of course there are far worse things that can happen but knowing that, and appreciating it, doesn’t mitigate the shock. You’re sent reeling: all those half-dreamt notions of taking your toddler to buy an ice-cream in the park, cooking up your favourite childhood treats, skipping round some halcyon village green fete (because we have a lot of those in Hackney) and buying freshly iced fairycakes for an impromptu summer picnic.
Then you start panicking about the next reaction: will it be anaphylaxis? Will you be with him? Will the EpiPen be enough? And schools: how can he possibly ever go to school without you to wipe down all the surfaces and ramraid every other child’s lunchbox for illicit peanut butter? And parties. And days out to cafes. And holidays. And what about this new thing called allergy bullying I’ve just been reading about? And what the hell do you do when every label on everything in the supermarket seems to contain that damn trace of nuts?
All of the above are reasons I decided to start this blog. When I looked, in desperation and panic, for something, somewhere, to tell me how to cope, what to buy, where to go, I found that, while the likes of Allergy UK and Anaphylaxis Campaign do very good and important jobs, a lot of the info is incredibly doom-laden. Pics of kids with horribly swollen faces; tales of horrendous reactions in farflung places, miles from the nearest hospital; posters warning of the dangers of travelling anywhere without your EpiPen.
But there seemed to me very few places parents could go to find and share info and advice on everything from allergy-friendly places to eat, the foods and products they buy, recipes they rely on and tactics they adopt for kids’ parties, schools and the like.
Plus, as they say, strength is in numbers. There’s a whole host of misinformation and misunderstanding about allergy swilling about, and an appalling lack of basic training on cross-contamination and allergy-friendly foods within the catering industry, not to mention the shockingly unhelpful labelling of prepacked goods. So a group of parents with the same agenda can perhaps help to persuade a local supermarket to stock a better ‘free from’ range, or a local cafe to improve its allergy-friendly provision, or a nursery to get its allergy policy together, far better than a lone mother or father on a mission might.
All of that is why support for (and between) parents of kids with food allergy is vital. And it’s why I’m so pleased that our hospital, St Mary’s in Paddington, is to become the first hospital allergy clinic in the country to set up a parent support group.
Backed by a £30,000 grant from the Imperial College Healthcare Charity, the first meeting will be held in Ealing on Saturday 21 April, with consultant paediatric allergist Dr Robert Boyle and Katherine Phillips from the allergy team to host and answer any questions. See here for full details.
Says Dr Boyle: “We’re delighted to be able to set up such a useful resource for parents of children with food allergy.
“Parents of food allergic children can have greater knowledge about some things – such as local places to eat or where to buy ‘free from’ food – than healthcare professionals and may be best placed to advise and inform other parents. We are pleased to be able to put them in touch with each other.”
The plan is to roll the scheme out across London, if all goes well – and I am very happy to say I will be helping to launch the second support group meeting, in the Stoke Newington area, this summer.
For more info check back here, follow me on @foodallergyuk or see the St Mary’s support group site at www.allergysupportgroup.org.uk. If you wish to attend one of the support groups or to host one near your home email info@allergysupportgroup.org.uk.
A momentous day: Sidney’s first ever taste of bread. Granted, it’s fake bread (Dietary Specials’ gluten free brown loaf) and if I’m honest it’s not a little like cardboard. But if it looks like bread, acts like bread and, as far as Sid’s concerned, tastes like bread, then I’m happy to say that’s what it is.
We passed the soya home challenge a week or two ago but it’s taken me this long to get over the niggling doubts: what if we hadn’t done it properly, what if we missed something, what if tofu wasn’t soya after all… Ridiculous, but it’s the first time he’s actually passed a food trial so I was a bit discombobulated by the success.
Now there are quite a few more options open to us: not only the egg-free, wheat-free recipes that demand soya milk (like pizza bases and wraps) but where we’re precluded from buying most of the branded wheat-free breads, because they contain egg, the Dietary Specials range has soya instead.
I am beyond excited. Do you know what this means? It means sandwiches! It means toast! It means cheese on toast! It means something miraculously quick and easy to take out and about for lunch and snacks. It means if we get home late and Sidney’s starving and I haven’t defrosted or steamed one of his homecooked concoctions I can just whip out the bread (“bread”) and slap on the butter, or the cream cheese, or the tomato, or the avocado, and – instant food!
I take my thrills where I can…
Well, we’re on Day Six of our soya home challenge. It’s like the Daz doorstep challenge but without Danny Baker. And more messy. Think it tastes worse, too.
Basically, we weren’t sure whether or not Sid was allergic to soya. If you haven’t had any experience of it, you probably think an allergy test is a pretty conclusive thing. That’s what we thought, too.
In fact, neither skin prick tests nor blood tests (which measure antibodies produced by the immune system in response to specific allergens) are 100 per cent reliable.
Our situation is complicated by the fact that little Sidney has dermatographism: it’s harmless enough, but his skin flares up when it’s scratched, rubbed or knocked. So he flared up to pretty much everything on the last skin prick test – including the negative control, water.
As for the blood tests, the results were clear for some (egg, peanuts and banana) but for others, such as soya, wheat and sesame, the levels of antibodies were on the low side. That means a food challenge is the only real way to test whether he’s actually allergic or not: in other words, introducing the food under controlled conditions and monitoring any reactions.
For sesame our doc decided a hospital-based challenge was the safest bet. And just as well, because he developed a violent red rash minutes after the tiniest smear of tahini touched his skin.
But for wheat and soya we’ve been allowed to test Sidney at home. You do it over a period of six days, with carefully printed sheets detailing the exact amounts to give him and what to look out for… and EpiPen and antihistamines at the ready.
We entered the cheerily named Weetabix Home Challenge before Sid’s first birthday with brash confidence: our doctor had always said his wheat reaction was ‘borderline’ and that Sid was 95 per cent unlikely to be allergic. Turns out he’s a five per cent-er. Up popped the hives on Day Six when we fed him a tablespoon of the stuff.
This week was soya week, and this time we had no false hopes. It would be a dream if he could have soya because it’s in virtually everything that doesn’t have wheat, nuts or egg. Nut-free chocolate? Soya. Wheat-free bread? Soya. Egg-free mayo? Soya.
So we started last Saturday with a touch of tofu on the inside lip – nope, nothing.
The next day, a quarter of a teaspoon; then half a teaspoon; one teaspoon. Yesterday, Day Five, two teaspoons: no reaction. And bless his socks, he’s been wolfing down the cold raw tofu as if it’s fish and chips.
And here we are today on Day Six. A whole tablespoon. And I’m overjoyed to say we’ve not had a peep of a problem… thus far.
Now we have to double the dose until he’s eating a normal sized portion for his age. As for what a normal sized portion of cold raw tofu is for a 15 month-old, I don’t rightly know, but we’ll aim for a small bowl and keep our fingers firmly crossed.
yesnobananas 