The diary of gluten and dairy allergic G (hereafter known as GalaxyGazer) and Eosinophilic Colitis sufferer M (hereafter known as Marvin)....
GalaxyGazer and Marvin (after the paranoid android from Hitchhikers Guide) are perhaps better known as G and M, the 13 year old daughter and 10 year old son of Rachel from 7yearstodiagnosis. G has been gluten and dairy-free for as long as she can remember, whereas M, after eating normally for the first 5 years of his life, is now on an extremely restricted diet of just 5 safe foods – though he keeps trying to find food number 6.
G loves reading and horse-riding and M’s hobby is anything that involves moving around! They also play musical instruments and attend their Stagecoach theatre school every week. Both children have strong opinions about life with M’s EC and all their food allergies and leapt at the chance to share their thoughts on a regular basis.
9th July 2017
It’s hard to believe that the end of the school year is just a couple of weeks away now, which means that come September, Marvin will be moving up to our local secondary school and starting a whole new set of adventures alongside his big sister.
(This is Marvin on the Dress as Your Hero Day which he organised at school for NEAW week – dressed as his hero, Ryan from Borough 22 who made him those wonderful doughnuts that he could eat!! See below.)
The last few months have been busy and unfortunately, we’ve had to deal with some unexpected health challenges for Marvin that have sprung up at the most inconvenient of times. He just about survived the pressures of SATS and we are now eagerly waiting to hear how he did, though we all know that it really doesn’t matter what his results are and we’re just proud that he managed the week without too many meltdowns.
Once SATS were out of the way, our focus immediately turned to this year’s National Eosinophil Awareness Week (NEAW) and whilst we decided to make it a much smaller event than in previous years, GalaxyGazer and Marvin had some great opportunities to share their experiences of life with EGID and food allergies.
GalaxyGazer: Mum, Dad and I decided that we would eat like Marvin again this year for NEAW and although I found it really hard, even harder than it was last year and wanted to give up, I managed to keep to his diet for the whole week.
Marvin: Since February I’ve been trialling lots of new foods, but because I haven’t been very well, by the time it got to NEAW, I was only eating my 6 safe foods again – rice, chicken, cucumber, apple, pear and parsnips – so that’s all they could eat too.
GalaxyGazer: I did get one evening off when I went to my Young Carers session mid-week and Mum said it was too difficult to ask them to provide a Marvin-friendly meal for me instead of my usual gluten and dairy-free one. I was really glad and really enjoyed my dinner that night!
Marvin: The best bit of the week for me was that Mum organised for her, GalaxyGazer and me to be on our local BBC radio station talking about EGID and living with my restricted diet. It was so cool to be in the radio studio and see how a radio programme is produced.
GalaxyGazer: We were interviewed live and didn’t know in advance what questions the presenter was going to ask, which was really scary, but it was ok in the end and I think we did a good job.
Marvin: Mum had warned us in advance that we needed to not give one-word answers or just nod our heads and I asked my drama teacher how I could give longer answers if the question just needed a “yes” or a “no”.
GalaxyGazer: Marvin ended up answering most of the questions…
Marvin: (interrupting)…well, Mum answered more…
GalaxyGazer: …but I spoke a little too. I really enjoyed doing it, though the best bit was seeing everyone who works in the building. I’d really like to find out more about doing research for programmes as that looked interesting to do.
Marvin: I’m not sure I’d want to be on radio, though lots of people said they thought I did really well, but I would like to know more about how to become a cameraman for TV.
GalaxyGazer: And one of my friends was really envious that I got to be live on the radio as she wants to work for the BBC when she’s grown up.
Marvin: Mum decided that this year we wouldn’t do anything else for NEAW, but I still wanted to do something at school. So I wrote to my Head teacher to ask if I could organise a “Dress as your Hero” day to raise awareness as well as money for Over The Wall. (ED. Over the Wall is a charity providing free therapeutic recreation camps for children with life-limiting illnesses.) Everyone paid £1 to come in their own clothes to school that day and we raised £216.25, which was amazing as I thought we’d only make about £100.
15th April 2017
We seem to have come full circle as GalaxyGazer and Marvin once again found themselves at the Awards ceremony for this year’s Free From Food Awards in London. Here they tell us a little more about the 2017 winners and the big night itself.
Marvin: This year’s Free From Food Awards ceremony was held at the same place we went to last year, though it was a lot easier for me as last year I was in a wheelchair with my broken leg.
GalaxyGazer: We missed the very beginning of the ceremony as we couldn’t leave home until after Marvin’s Grade 1 cello exam had finished, but the trip to London went really quickly and we listened to lots of cool music in the car.
Marvin: The ceremony is held at the Royal College of Physicians near Regent’s Park and Dad managed to find a parking space right outside the door. It’s a really cool building though neither GalaxyGazer nor I like the portraits on the walls. They’ve got really creepy eyes.
GalaxyGazer: It was really interesting to find out who had won the Gold awards this year. I knew lots of the brands already, but I really enjoyed learning about other foods that are available and safe for me to eat.
Marvin: The best award was the Superhero one, though I was disappointed that my personal superhero, Ryan from Borough 22, wasn’t nominated for it - both GalaxyGazer and I thought he should win!
GalaxyGazer: Once the ceremony was over, it was time to go and eat some of the free from buffet. This is my favourite part of the evening as it’s completely different from a normal meal out. I’m used to only having a choice of a few foods that are safe for me, but at the ceremony I’m able to eat most of the foods and I choose whichever ones I want to try.
Marvin: Even though I’m trialling some new foods at the moment, I still couldn’t eat any of the winning entries as they weren’t safe for me. Mum did allow me to have a taste of something I wouldn’t normally be able to eat and I really really enjoyed that mouthful (or two!).
GalaxyGazer: The food was really yummy and it was nice to be able to have so much choice. My favourites were the Kelkin Teacakes and the Miiro Salted Caramel Choc Ices – and I enjoyed more than one of both of those!
Marvin:Whilst GalaxyGazer ate her food, I ran around and took lots of photos of the foods with my phone, which was lots of fun.
GalaxyGazer: I also enjoyed getting to know some of the people from lots of the companies that were there and finding out more about how they came up with their ideas. I was lucky because I got to talk to Lucinda Bruce-Gardyne from Genius bread. It’s my absolute favourite GF/DF bread and I love their bagels too.
Marvin: We had a great night out, even if we were both exhausted for school the next day!
18th March 2017
There hasn’t been much time to stop and reflect since Christmas and February proved to be one of the busiest months of all. Despite their hectic schedules, GalaxyGazer and Marvin have managed to squeeze in the odd celebratory meal and wanted to tell us all about it.
GalaxyGazer: February was a busy month for Marvin and me. We stayed with our Grandma because our Mum and Dad went to New York for a week.
Marvin: But before they went there, Mum and Dad also judged some of the categories at the Free From Food Awards 2017, which meant they were away for nearly 2 weeks. And GalaxyGazer and I were upset because we wanted to go judge the Awards as well.
GalaxyGazer: They went to New York because it was Mum’s birthday present from Dad…
Marvin: At the end of the month, we all went out for lunch for Mum’s actual birthday. We went to the Café Nouveau near Frome and the owner, Susan, even made Mum a spiced apple cake for her birthday cake.
GalaxyGazer: We went there for lunch because last year we were lucky enough to be able to visit as judges for the Free From Eating Out Awards. We thought it was a brilliant café and it ended up as a Gold award winner. Everything there is both gluten- and dairy-free, which meant I could choose whatever I wanted from the menu as it was all safe for me.
Marvin: They can also cater for all of my allergies and this time Susan also made me a vanilla rice milk drink which was delicious. They even warmed it up for me so it was a little bit like a hot chocolate – yum!
GalaxyGazer: Mum’s spiced apple cake was also gluten- and dairy-free and looked really good. I tried some, but it wasn’t my favourite flavour, although Mum and Dad both absolutely loved it.
Marvin: And they let Mum take the remaining pieces of her cake home, so we shared it with the rest of our family too.
GalaxyGazer: I would recommend this café to other people because it can cater for allergies really well and I have had the most amazing food there both times we’ve visited.
20th January 2017
Christmas is heralded to be “...the most wonderful time of the year…”, filled with the excitement of seeing what Father Christmas brings, the promise of time together as family and the expectation of more food in a couple of days than most of us would consume in an average week. Roast turkey is the central piece for lunch on the day itself and is then reinvented into curries, stir-frys, pies and cold cuts to be endured enjoyed for an unexpected number of days afterwards too. When you’re living with chronic illness and a huge amount of food allergies, getting into the Christmas spirit can be challenging and here GalaxyGazer and Marvin share a bit more about what the recent holiday season meant to them.
This year we spent our Christmas in South Wales with our Mum and Dad, Grandma, Great-Aunt and Great-Uncle. We had a really great time and wanted to tell you all about it.
What did you have for Christmas lunch?
And how about dessert?
Did you mind having to take your medicines?
What was your favourite present?
Do you have any New Year’s resolutions or hopes?
11th December 2016
Takeover Challenge at Great Ormond Street Hospital
Takeover Challenge is a fantastic project run in November by the Children’s Commissioner and sees organisations and businesses across the UK opening their doors and inviting children and young people to take over adult roles. It gives children the opportunity to gain insight into the working world, whilst the organisations get a fresh perspective about their work. Last week, GalaxyGazer and Marvin were invited to be a part of this year’s Challenge at Great Ormond Street Hospital and were keen to share their experience.
What did you do last month?
What job did you take over?
What did you do during the day?
What was the most interesting thing you did during your day?
What did you learn?
Would you like to do the Takeover Challenge again?
Fiona Jones, the children and young people’s participation officer at GOSH said: “Takeover day is a great opportunity for children and young people to learn about and meet the people that run the hospital services they access. GOSH works hard to ensure that we are listening to and involving children and young people in the way that the hospital treats our families. Takeover day is the perfect opportunity to put that into practice and let all levels of staff hear first-hand from our patients.”
15th September 2016
Back to school
Going back to school can be scary. Some people love the thought of school, others hate the thought. I looked forward this year to going back because I am in Year 8 and was excited to be doing Dance and Drama although, annoyingly, the Year 7s do it as well, whereas we didn’t.
In my school, when we go into Year 8 some of us learn two languages and there are three advanced sets who do: Spanish and French, Spanish and German or French and German. I am in the set that is learning Spanish and French and am really enjoying it so far. Another difference is that in Year 7, every other week we had Breakout, which was where we had no proper lessons, but did a variety of educational and fun activities such as Art in the City and a tour of a local museum. Unfortunately, in Year 8 there is no breakout, which I am sad about.
I haven’t had to think too much about going back to school with my food allergies because this is my second year at the secondary school and most people already know about them. Most of my friends eat packed lunches, which is a good thing because I take safe food from home for my lunches and I can sit and eat with my friends. I’m not keen to try the school lunches because I’ve almost always had packed lunches to avoid any cross-contamination issues.
Not much has changed since last year.
In my classroom, I have a swap box that is kept away from the rest of the children in my class and is in my teacher’s cupboard. Nobody is allowed into the cupboard or to touch my swap box. My swap box contains trading cards and Lego mini-figures to swap out with any sweets that are brought in to celebrate people’s birthdays. I can’t really remember when I first had my swap box, but it used to include safe sweets before I went elemental and was put on a very restricted diet. However, this year one of my friends, Moonstruck, also brought in some Foxes Glacier Mints on his birthday for me because they are my only safe sweets.
This year I’m in Year 6, which is the last year of Junior school and I have the privilege to eat my lunches outside if I want, no matter what the weather is like. I have to take a packed lunch every day because my diet is so limited and it would be difficult to cater for me. Just like GalaxyGazer, most of my friends also have packed lunches, so I always am able to sit with them during lunch.
Another of my friends, Flyer, has Type 1 diabetes and he and I have to go up to the school office before lunch every day so that I can take my medicines and he can test his blood glucose levels and have his insulin.
My school knows me so well that I wasn’t worried about going back to school this September. They have looked after when I had my feeding tube and then again when I broke my leg, so I know all the staff very well and they know me. I feel much more scared about the move up to secondary school next year, even though I will go with lots of my friends because it’s a new school to me and I don’t know how they will cater for all of my allergy needs or what I will need to do with my medicine. However, that’s a year away and I’m going to enjoy this year as much as I can.
13th August 2016
Going on holiday....
Marvin:(interrupting excitedly)I can’t wait to go!
GalaxyGazer: (patiently) Yes Marvin, we know you’re excited!
Inside the suitcase Mum will pack some packets of rice crackers, apple wiggles, apple crisps, microwaveable rice pouches, cereals and rice milk that are safe for Marvin to eat and which we don’t know if we can buy whilst we’re there as well as all of the medicines Marvin will need. I’m hoping she’ll also pack a few gluten-free and dairy-free snacks for me and I think she normally takes some of my bread with her too.
Mum says that because we need this food for medical reasons, the airline lets us take the extra suitcase on the plane for free. She’s done this when we’ve been to Portugal before and also when we went to Florida a couple of years ago. Mum said it’s always worth checking with your airline if they can accommodate this request and that in her experience, most of them do.
Marvin:(in a state of excitement)
Marvin: (interrupting again)
Thank goodness Mum has got that all sorted and Marvin and I just have to worry about enjoying our holiday abroad!
3rd July 2016
The 3rd week of May seems like a lifetime away now, what with school holidays fast approaching, but it was an important week in GalaxyGazer and Marvin’s household. May 15-21 was National Eosinophil Awareness Week and both our diarists took the opportunity to spread the word about EGIDs (Eosinophilic Gastro-Intestinal Disorders) and how this group of rare diseases affect their world. Here they share a little more about what they did to raise awareness in their local community.
26th May 2016
GalaxyGazer and Marvin go to the FreeFrom Food Awards party – and GG eats five chocolate pots!!!!
At the end of April, Galaxygazer and Marvin went to the Free From Food Awards 2016 presentation with their Mum and Dad and they wanted to tell you all about it.
Our journey to the FFFA16 started at the end of the school day. Mum and Dad met us at the car, which had been packed with our outfits for the evening as well as some snacks to keep us happy as we travelled. Mum had also packed a tea for Marvin so he wouldn’t go hungry during the ceremony. During our trip we spent the time singing songs, listening to CDs and cloud-gazing, which helped pass the time. We got stuck in lots of traffic on our way because there had been an accident on the motorway, which made us anxious about whether we would arrive at our destination on time. Luckily we did.
At the awards we met lots of people, including Ryan the Doughnut man (Borough 22), who makes the most scrumptious free from doughnuts which are safe for both of us. Marvin had broken his leg a couple of weeks before the FFFA16, so Ryan signed his cast – the first person to do that! The ceremony took a long time because there were so many awards to present to the winners of the different categories and the best bit was when they announced the overall winners. The overall winner was Nutribix, which was from the Breakfast category that Mum had helped judge and she was thrilled that they had won. Galaxygazer is still waiting to try Nutribix, but hopefully Mum will manage to get some soon.
Once the awards were over, it was time for food. We had already had some canapés to nibble on during the ceremony, which Galaxygazer thought were delicious. She particularly enjoyed the water buffalo on toast, but was really keen to get started on the main buffet. It was fantastic that the canapés and the buffet were full of free from options which were safe for Galaxygazer to try, even with her gluten and dairy allergies. Everyone apart from Marvin was able to try a selection of the winning food items and Galaxygazer was ecstatic to be able to eat so many of them.
She said that the Simply 7 Lentil crisps and Tesco's Garlic Bread were the best of the savoury choices and ate 5 servings of the Coconut Collaborative Little Choc pots – we think that was the real success of the night! Marvin wished he could have sampled at least a few of the foods that were available, if not all, but maybe next year.
A big thank you to all the people who helped organise the FFFA16 and those producers who took part. We really enjoyed being part of them and hope to do it again next year.
30th April 2016
27th March 2016
Celebrating a wild 10th birthday!
Have you ever wondered how well a 10th birthday party can really go when the birthday boy can only eat a handful of foods and just wants to be like everybody else? This month Marvin explains exactly what he did and ate for his birthday party this year and how it compared to previous ones.
In the end we didn’t have proper party food like sandwiches, crisps and biscuits which I was glad about because I didn’t want to be the only person not eating proper food. Instead we had a fruit and sweets buffet because I was allowed the occasional Foxes Glacier Mint or Glacier Fruit as well as rice and cucumber.
This year my party was very, very different and I even had a cake I could eat. My Mum and Dad got me a bearded dragon as a joint Christmas and birthday present and so I decided I wanted a reptile party.
A woman came to our house with lots of different reptiles including a ball python, a tarantula and 2 cockroaches and my friends, sister and I had the chance to hold them and find out more about them. Not everyone wanted to and not everyone did, although I touched and held everything I was allowed to and my Mum even let the tarantula crawl across her hands!
I even had a proper birthday cake and, best of all, Mum made it from my safe foods (rice, pear, apple, sugar and coconut oil) so I could eat it too. She decorated it to look like a bearded dragon was sitting on top of a rock, surrounded by brown sugar sand and it was absolutely epic! My friends loved it, although Lunar said it looked nothing like a Komodo dragon, until he realised my Mum had made it and then he said it was amazing! Everyone laughed at that, especially when she pointed out it was a bearded dragon and not a Komodo one.
On top of that, Mum talked to the man who made the allergy-friendly doughnuts for the Free From Food Awards 2016 that she had brought home for my sister, GalaxyGazer, to try.
He adapted his recipe to be safe for all of my food allergies and baked a special batch just for me to eat. I was trialling gram flour at the time and so he used gram flour, rice flour, apple puree, sugar and some other ingredients that I don’t know in them. This was my reaction! They tasted like actual doughnuts, which I haven’t had for a long, long, long time.
As I told my Mum, they were almost better than birthdays and I give a big, big, big thumbs up to Ryan at Borough 22, the man who made them for me. They were a brilliant birthday treat because I could eat something that looked the same as the ones that my friends were eating and I didn’t feel like I was missing out.
One of my friends, CosmicBoy, has just started eating a gluten-free diet like GalaxyGazer and he tried one of her doughnuts, which he said was delicious – there wasn’t a crumb left on any of our plates. Even better, Mum has frozen the remaining doughnuts so that I can have a treat every now and then without having to order another 6 from Ryan – though I wouldn’t mind if she did!
Marvin’s marks: at least 150/10!
27th February 2016
Inside the minds of a #FFFA16 judge’s children
Our Mum was recently one of the judges for the #FFFA16 and we had our own, very definite opinions about her doing it. Our thoughts about her going included:
Why can’t we go?GalaxyGazer: I would have liked to eat the 116 foods Mum got to eat and it could help us find more foods we can eat
Marvin: Even though I wouldn’t have been able to eat anything, I would have liked to have met the famous people there and frankly I could really use the time off school.
Why are you going without us?
Why can’t we come?
Marvin: I WANT to come!
Who said you could go because we didn’t?Marvin: I definitely DIDN’T say you could go,
GalaxyGazer: And I didn’t either.
Why did you have to go?
Marvin: Oo! Oo! Can I go next time?
Can’t someone else go instead of you?
Marvin: But couldn’t someone else go? Preferably me?!
But who’s going to be looking after us if you’re in London?
Marvin: (sternly) And don’t tell me it’s Daddy - he’s no fun. Really he isn’t, but please don’t tell him that!
Mum was judge at 4 different food categories, but we really weren’t sure why she chose the ones she did:
Marvin: I can see these could be very useful except for 2 things: 1) I can’t eat them and 2) I don’t normally eat breakfast
Marvin: I can’t eat these (sticking tongue out before pouting). Goodbye! PS: except Foxes Glacier Mints and Mint imperials
Ready MealsMarvin: Still can’t eat it. Not going anywhere (looking bored)
GalaxyGazer: Not changing the facts here people, but again Mum said there was some things that I might be able to try like scampi, which sounds yummy!
GalaxyGazer: Mum brought back 6 doughnuts for me to try and these were absolutely delicious. They were like little pockets of heaven in my mouth. When can I have some more?
Mum has said that she might be able to go back to judge the food awards again next year. That sounds like an okay idea, but we’d much rather go instead. Don’t worry Mum, if you’re not well or too busy to go, we’ll take your place!
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