Tag Archives: gluten-free

Yes, you guessed it, today is:

and signifies perhaps the hardest challenge we’ve taken on for EGID awareness week, ever. This week Mike and I are standing in solidarity with M and with all those other brave souls out there who have to battle with EGID every day and have no chance to opt out when things get tough. For the past 2 years, I’ve documented how we’ve followed M’s diet for the week, restricting our diets as he has to restrict his and even drinking the occasional glass of Neocate Active to get a glimpse into that aspect of his life.

When we first started planning our activities for this year’s awareness week, I briefly considered eating like M again, but dismissed it, thinking that the limitations of 3 ingredients and a litre of E028 on a daily basis might just prove to be too much for both Mike and me. However, fast forward a few weeks to my preparations for my newspaper interview and I revisited the idea of “eating like M” and wondered if actually this might be something we could achieve. I chatted it over with Mike, debated whether we could do it and, both being keen to give it a go, decided this would be our diet for the week. Each day will be filled with 3 meals of rice, chicken and cucumber prepared in a variety of ways and Mike will even be drinking the litre of E028. I have undertaken this with careful consideration of my own T1D and will be keeping an even tighter eye on my blood sugar management to make sure that I stay fit and healthy during the week. I have also opted out of the E028, but will be partaking in a pint of Neocate Active everyday to show willing.

We’re not on our own either as there are other parents, family members and friends who will be spending some or all of this week eating like their loved ones. Trust me, it’s not an easy decision to make, but is a great way to raise awareness and get conversations started, which is reason enough to stick to it for a week. I am filled with admiration for just how well M has coped with such a bland diet for so long and have been struck with the harsh reality of how much pain he must have been in for years to be able to cope with these limitations just because it’s helping him feel better. So tomorrow when you’re tucking into your bowl of honey nut corn flakes or a bacon roll for breakfast, or sitting with your feet up dunking a chocolate biscuit into your cup of tea, or perhaps even enjoying a plate of fish and chips for tea, spare a thought for M and the others like him who are eating a restricted diet right now or may not be able to eat anything at all. This week it really is a case of “All for one and one for all“.

“Elementa(l)ry, my dear Watson”

Dinner Plans

6 Replies

The beauty of staying in the amazing Applause apartments in East Aldgate was the ease with which we could accommodate M’s current dietary requirements at mealtimes. Every morning, he and G enjoyed a bowl of safe cereal and rice milk for breakfast, whilst Mike and I had coffee and brioche before we headed out for the day. Once breakfast was done, the children and I would finish getting ourselves ready and Mike would make and pack lunches for us all. The ability to prepare packed lunches was just what we needed as not only were we able to meet M’s extreme food requirements, but also the dairy- and gluten-free needs of G.

On our first day there, we stumbled across a fantastic shop called “Planet Organic“, where we were able to pick up some previously undiscovered M-friendly bits and pieces, including mini rice-cakes, which are perfect for his lunchbox. Of course, with the packet now nearly empty, the race to find them closer to home is on before he finishes them off. The brown rice noodles have also been a massive hit and make mealtimes just that little bit more interesting than they have been over the last 3 months. Sadly, the one thing we had been hoping to find, rice pasta, was sold out and so my search for that alternative continues.

The more interesting task was that of our evening meal. One of the things we have always loved to do is eat out as a family and it is one of the things that M in particular has found hardest about having his tube. We have had a wealth of experience over the last decade of finding restaurants that will accommodate the ever-changing dietary needs of G, M and even me and we had settled on a few firm favourites that we knew would almost always meet our requirements. Of course, the option to cook dinner where we were staying was great to have, but Mike and I were both looking forward to having a break from the monotony of 3-ingredient dinners and decided to do some focussed research before we even left the comfort of our own home. We spent hours one evening trawling the internet, finding restaurants in the areas of London we were likely to be near at meal-times, looking at their menus and investigating whether they had allergen information readily available to read then and there. To our delight, we found a few where we knew we could cater for G and where it seemed probable we would also be able to order safe food for M, and we couldn’t wait to put our selection to the test.

Our first was Giraffe, which is just round the corner from GOSH and a popular choice for our post-appointment dinners. When we got to the restaurant, I asked the waitress at the door whether they would be able to cook safe food for M before she had time to find us a table and the response was fantastic. She turned out to be the restaurant manager and headed off in the direction of the kitchen to talk to their chef and find out exactly what our options were. The chef assured us he could cook plain, boiled rice and grill a chicken breast for M without using any oil, so, feeling hopeful that this could prove a success, we found a table to enjoy our first family meal out for 5 months. M was delighted with the plate of food that arrived for him and had no allergic reaction to any of it, reassuring us that Giraffe is a safe choice for the future.

As it turns out, Giraffe was the only restaurant we ate at that was able to cook plain rice for M, but we enjoyed 2 other great meals out and both restaurants were more than happy for M to munch away on his own rice-cakes to accompany his chicken and cucumber. The second restaurant was Bella Italia, a popular restaurant chain found across the UK and we had dinner at their St Martins Lane branch. Again, our waiter worked with the chef to ascertain exactly what could be prepared for M and this amazing plate of food arrived – M joked that he thought they had cut him up a whole cucumber to make up for the lack of variety on his plate. We were also impressed with how much their gluten-free offerings had improved since the last time we ate there as G was able to enjoy some GF garlic pizza bread alongside her GF margherita pizza with pancetta and ham with goats cheese.

My final recommendation is Jamie’s Italian and I can’t begin to tell you how impressed we were with the excellent service provided at their Canary Wharf restaurant. From the greeter who listened to our initial needs to the manager who came to answer our questions before we even got to the table, they were keen to reassure us that they could meet all our requirements. As for our amazing waiter, Tom H, he listened carefully and patiently to what we needed, made sensible suggestions based on M’s safe foods, checked with the chef that everything could be prepared safely and treated M just like any other child eating in the restaurant. He was delighted with the plate of food that arrived at the table as it was presented in the exact same way as G’s dinner and his unparalleled attempt to eat almost all of the food served earned him the same prize that G was awarded for eating her salad – an achievement that we rarely manage at home.

All in all, our trip to London proved to be a fantastic and unexpected success when it came to our dinner plans for our stay. We found 3 restaurants who were prepared to go the extra mile, make the effort and help us enjoy some great meals out. Even better, M had the opportunity to feel more “normal” than he has done in a long time, which, for us, was absolutely priceless.

A tri-umph of rice-themed goodies!

1 Reply

Recently I’ve been spending my time baking and cooking up a whirlwind as the days ahead have been looking busy. With a day for G and M at the holiday club run at Mike’s work, an appointment with M’s consultant and dietitian at GOSH to review his progress 4 months post-tube and a planned short stay in London to see the sights and to dip our toes into the world of being away from home with NG-tube in tow, a plethora of safe snacks and treats for M were much in need. I prepared rice pudding, rice-flour sugar cookies and rice krispie cakes to satisfy the appetite of my youngest and to reassure myself that we would have some things with us to feed him whilst the rest of us enjoyed some much-missed meals out. I also used the opportunity whilst trialling banana to add some to the mix and made some banana sugar cookies too.

The recipes can be found in the everything-free recipes section and are so easy to follow that next time round, my plan is to be sitting back with a cup of tea, whilst G and M get on with the task of creating their own delicious masterpieces!

Who knew you could make so much from rice, sugar, rice milk and canola oil? Any other suggestions for simple recipes will be very gratefully received!

“Muuummm, what’s for tea tonight?”

4 Replies

Oh how this resonates..

If your family is anything like mine, that question usually comes just as you’re struggling through the door: with house keys in one hand, car key gripped firmly between your teeth, handbag on one arm, cello on your back, mobile phone pressed to your ear as you attempt to talk to the dietitian/consultant/other healthcare provider, who’s asking if now is a good time to talk and you can’t say no as you’ve been trying to contact them urgently for at least the last 3 days and who knows when they might call again; plus the school bag(s)/shopping bag(s)/extraneous bag(s)* (*delete as appropriate) you’ve picked up along the way are weighing down your other side and threatening to upset the delicate balance you’ve perfected in your struggle to cover the 100 yards or less from your car to the house. Meanwhile, your curious offspring are waltzing in behind you, or possibly squeezing past you, through the already impossibly small and too-narrow-to-negotiate-safely doorway, bearing no more than a half-empty water bottle and their coat, worn superhero style to leave their hands free to carry absolutely nothing else at all. And just as you think you’ve achieved it and managed to get everything safely inside, they open their mouth and ask that unavoidably fraught dinner-question and the peace shatters and your world tumbles down around your ears. Does any of that sound familiar or is it just my household?

For M at the moment, my answer is fairly standard, although he adds his own unique twist by asking if dinner will be “chicken with rice and cucumber” or perhaps “rice and chicken with a side of cucumber”? For a while, when he was still 100% elemental, he would even ask if he could have “air-sticks” – “like bread sticks you see, but without the bread” – showing that the ability to laugh his way through this experience is his greatest strength in beating this disease. I have become a self-confessed expert in cooking with 3 principle ingredients – rice, chicken and cucumber – and the bonus extras of herbs, rapeseed oil and sugar. Rice has been broadened to include its derivatives and the inclusion of rice milk, rice cream and rice pops (as long as they’re gluten-free) has added to my ever-increasing repertoire of 3-ingredient recipes.

Rice-flour sugar cookies

In the past few weeks, as well as my fall-back favourites of roast or grilled chicken with plain boiled rice, I have also perfected deep-fried savoury rice balls, chicken nuggets, chicken and cucumber curry, fried rice, chicken stir-fry, rice-flour sugar cookies and rice pudding. My Mum has also made M a chicken breast stuffed with rice and cucumber, courtesy of the inspiration and some nifty hints suggested by our hairdresser and which was an instant hit with our young diner. It’s surprising just how many different recipes you can create with just a few ingredients and there’s even a few more that I’m hoping to try out in the coming weeks. What started out as a daunting challenge to entice M’s appetite and encourage him to once again eat whilst navigating the tricky world of identifying his food allergies, has become yet another success story in our household.

My victory with such a limited range of ingredients has been all the sweeter given the recent UK news story of the letter sent to the Daily Telegraph newspaper by over 100 top chefs and restauranteurs condemning recent EU legislation requiring restaurants to provide information about which of the top 14 allergens the dishes on their menus contain. It was never a requirement that they did not cook with these ingredients, but rather that they should be able to inform diners of what the food prepared contains, with the knowledge and pride in their ingredients that I would expect from any talented chef. Whilst widely welcomed by those of us in the allergy-world as a step towards helping us make informed decisions about eating out, these chefs warned that such requirements would harm “…the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.”

Like so many others in my situation, I wrote a response on the Telegraph website, pointing out that this legislation will help me to protect my children and give them experiences that will ensure their continued health and enjoyment, I do not deny that it’s up to me (and they as they grow older) to ask about allergens, but there’s no point asking these questions if the restaurants, waiting staff or chefs cannot provide the information needed and the lack of understanding about cross-contamination risks is sadly common across the food industry.

Our experience last summer in Disney proved that this type of requirement does not need to be restrictive as excellent allergen information was readily available and nearly everywhere we ate produced meals for G and M that rivalled those being served to any other customer there with a “normal” diet. The chefs were knowledgable, came to our table to discuss their allergy needs and made the effort to find out what my challenging duo would like to eat – excellent service all done with a smile.

The big challenge was always to cook M-friendly food and these days that task has become even more testing. In my opinion, these rules will have little impact on spontaneity or ingenuity – try cooking or baking when you need to avoid wheat/gluten, egg, dairy, soya and potato to name but a few. Ingenuity comes when you try to prepare a meal that makes your child feel that they’re not missing out and that’s something I feel I’ve proved is possible, even for an amateur cook like me.

Piece of cake

4 Replies

These photos are of the supplies I needed to create this year’s birthday cake masterpiece for Master M as, after all, this had to be a birthday cake like no other I’ve ever baked before. In the same way that I had discussed my plans for the food we would serve at their Cluedo party with M, we sat together to talk about the various options for his birthday cake. I could bake a “normal” cake for him to give to his friends, I could use polystyrene dummy cakes to create an authentic-looking, but totally M-friendly cake or we could try something completely different. A friend had suggested using small bottles of 7-up to create a tiered cake and then giving every party guest a bottle to take home, which I thought an inspired idea as it’s one of the few things M has been able to enjoy since his NG-tube was passed, but M disagreed. He preferred the idea of the polystyrene “fake” cakes and we headed off to the shops over half-term to source the cakes, decide how many tiers he wanted and get all the art supplies I might need.

Every year I try to create birthday cakes that either echo the themes of the parties themselves, be that mini-golf, magic or minions; or that are innovative and something the children have never seen before, such as last year’s pinata cake for G. This year’s Cluedo theme offered me a wealth of ideas and I just needed to decide how to put them into action. I settled on a black base layer and ever-grateful to avoid the nightmare of icing a free-from cake, attacked our 3 tiers with a sturdy brush and bottle of black paint. “Cakes” fully covered, I liberally sprinkled some silver glitter over them all before the paint dried, positioned the silver 9 on the top and added an emerald green ribbon trim for that touch of old-fashioned glamour and to fit with M’s role as party host, “Captain Emerald”. I stuck the tiers together using PVA glue and then inserted some wooden skewers, just to make sure there was no chance the cake would fall apart before the day itself.

Next came the fun part of adding the decorations. I had previously printed out silhouettes to use for the characters and images for each of the murder weapons and had a number of them left-over after I had prepared the cards for the party itself. Choosing carefully, I glued the weapons to the bottom layer and a selection of characters to the middle layer, making sure I included the image of G’s character, “Countess Pearl”. My final step was to stick Captain Emerald’s silhouette to a piece of black card that I had already covered generously with more silver glitter and added this, leaning against the top-tier of the cake, before leaving it all to dry.

M’s cake sorted, I moved on to the preparation of a cake for G. Much as I had enjoyed exploring the “crafts” side of my personality, this was the moment I’d been waiting for since Christmas. Not so much the baking of a cake, though I love decorating birthday cakes to wow my children, but more because I finally got to use the best Christmas present I had received and one that was completely unexpected. I’ve been drooling over the KitchenAid food mixers for years, imagining one gracing my kitchen counters and last year started saving towards buying one of my own. To my delight, and absolute surprise, my wonderful Mum invested in a Ice-blue model as my Christmas/birthday present and it’s been sitting in the kitchen, taunting me daily with its absolute beauty, whilst I’ve waited for a chance to take it for a test-run. All I can say is thank goodness I needed to whip up 24 G-friendly cupcakes as well as the birthday cake itself as I flew through the first task and loved every moment spent doing it!

My birthday cake challenge was easier this year as although G has allergies of her own, I was able to use eggs, an ingredient I haven’t baked with in over 3 years. I used a simple gluten- and dairy-free recipe and then split the mixture between 5 bowls. Inspired by both the colourful characters in the Cluedo game and a recent episode of Great British Comic Relief Bake-Off, I added 5 different food colourings – 1 to each bowl – and then marbled the cake mix in the baking tins. As I waited for the cakes to bake, I turned to my trusty laptop to search out some ideas for how to decorate G’s Cluedo cake and settled on recreating the board itself out of icing. Working late into the early hours of Sunday morning to finish this final part of the party preparations and when I finally fell into my bed at around 3am, I was delighted with the end results.

The big reveal of my “showstopper” cakes was a huge success. Both G and M were thrilled with their cakes and liked the fact that even though they were completely different, they both fit our Cluedo theme perfectly. The cakes had pride of place at the centre of our Dessert buffet table and were a real talking point for children and parents alike. A job well done, though I’m not rushing to make 2 cakes for the same occasion again any time soon – my nerves just can’t take it!

“I like rice…

3 Replies

..Rice is great if you’re hungry and want 2000 of something.”

– Mich Ehrenborg

I never realised just how daunting food could be until we embarked on our dietary journeys with our children. It might sound ridiculous, but having achieved such a resounding success from M’s move to the elemental diet, the prospect of food reintroductions caused my heart to beat a little faster, my palms to grow a little sweatier and several middle-of-the-night awakenings to contemplate just how the whole process would work. A big part of the problem was the lack of ~~useful~~ any information from the dietetics team about…well about anything I wanted to know. I like to have a clear plan to follow and needed to understand how we would choose which foods to start with, how each food should be prepared, how much to give and how often. The vagaries of sweeping statements such as serve M “a portion”, with no hard and fast details of the specifics drove me insane, but with lots of discussion, frantic e-mailing and a move back to our old and trusted dietitian rather than the one I’d had run-ins with during M’s admission, we finally got the answers we were after.

Courtesy of alternative-doctor.com

The decision was to begin with rice, commonly considered to be hypoallergenic and therefore a great starting place for M. Whilst many children reintroducing foods following the elemental diet might trial potato first, this was one of the known triggers for M’s allergic reactions and so we needed to find a basic food that was likely to be safe. Despite being told that we could comfortably start with a “portion” of rice, I chose instead to take things slow and M had just 1 tablespoon of plain, boiled rice on that first night. He enjoyed his mouthful and, looking forward to having more the next day, carried on somewhat oblivious to the anxious monitoring I was trying desperately to hide. The evening passed without event and we all went to bed happily – well, the rest of the family went to bed happily, I went battling the usual Mummy-paranoia that accompanies anything and everything that involves my children and their welfare.

Courtesy of smartwebsite.ru

Since that day, around 4 weeks ago now, we have been able to gradually increase the amounts of rice M eats each day and have branched out to include rice milk, rice cakes and gluten-free rice cereal – a veritable feast! This week I even managed a rice batter, using rice flour and sparkling water and made some deep-fried rice balls to tantalise his taste buds. M has shown an occasional atopic reaction to the rice as it triggered a rash across his shoulders and back, although the hives have now calmed down as his body has become accustomed to eating once again. Despite this rash, we have seen no reaction in his bowels and are able to count rice as a “safe” food for him. Even better, we have also been able to add chicken to the mix and this week have been trialling pineapple, though the jury is still out as to whether this may be causing a mild behavioural reaction akin to the one we’ve seen him experience before to soya. Assuming all is well with the pineapple, we have plans to trial pork, cucumber and carrot over the coming weeks and may even have time to squeeze in another carbohydrate before we head back to GOSH in April.

Kracklecorn? What’s Kracklecorn?

6 Replies

Courtesy of gruffalo.com

Kracklecorn! Why, didn’t you know?

(with apologies to Julia Donaldson and the Gruffalo)

No? Well neither did I until we travelled to London for M’s September GOSH appointment. I had left Mike to keep an eye on the children whilst I fought my way to the train’s buffet car for a much-needed injection of caffeine. As I waited for my latte to be made, I spotted an attractive looking blue and white striped bag hidden amongst the more familiar packs of crisps and bars of chocolate and, intrigued as to what it was, I asked if I could look at the packet and ran my experienced eye over the extremely short list of ingredients. I was thrilled to discover that the four ingredients (maize corn, rapeseed oil, cane sugar and sea salt) were all 100% safe for both G and M and naturally snapped up a bag of Kracklecorn for them to taste, with fingers tightly crossed that I might just have found another M-friendly snack for them to enjoy.

I think they broke records in devouring this popcorn treat and Mike and I barely managed to sneak even the tiniest of morsels to taste ourselves. I’m not a fan of salted popcorn usually, but the balance of the not-too-sweet and the not-too-salty was spot on and even I found little to fault with this snack. As the children begged for more, I had visions of having to buy out all the stock on the train and heave my haul around London, so imagine my delight – and Mike’s relief – when I discovered that it is readily available at most Tesco stores, including, thank goodness, those a stone’s throw from our front door.

For those of you yet to discover this brand, Kracklecorn is hand-made by Portlebay Popcorn in their factory, lovingly known as “The Poppery” in Devon and is available in a huge range of flavours, the like of which I’ve never seen before. Unfortunately, the “Classic” sweet and salty is the only one suitable for my pair, but I can assure you that the “Lemon Sherbet” and “Crispy Bacon and Maple Syrup” flavours are equally delicious and unequivocally moreish – a fact that Mike cannot dispute as we fought over who would finish the bag of lemon sherbet popcorn on Saturday night.

I contacted Portlebay Popcorn to ask for some samples to review and when this parcel arrived on our doorstep, G and M thought all their Christmases had come at once. I asked for their thoughts as they munched their way through yet another bag and the comments “delicious“, “amazing” and “10/10” were just about audible as they crammed more popcorn in. Despite the best efforts of 2 small children in the 7Y2D household in the run up to Christmas, we still have several packs of Portlebay Popcorn waiting to be enjoyed and the question has been what to do with them all as G has been left to devour them on her own whilst M is on his elemental diet. I found the solution today.

Today is the perfect day to be offering my very first blog competition as it is, believe it or not, National Popcorn Day, though admittedly this is celebrated mostly in the USA where they consume an unbelievable quantity of this sweet treat each year. Thanks to the generosity of Portlebay, I am offering 2 lovely readers the opportunity to win 3 bags each of the “Classic” Kracklecorn to enjoy. Simply enter via the link and I wish you all the very best of luck and happy munching!

a Rafflecopter giveaway

*Disclaimer – We were sent packs of Portlebay Popcorn for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

7 years to diagnosis

Searching for an answer