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My Crohn’s Story for World IBD Day

Lots of people have been getting in touch recently asking for Crohn’s or IBD advice after being first diagnosed and I suddenly thought it would benefit others to write down my entire Crohn’s story – warts and all, from start to finish (well, to present!), for World IBD Day today. I was diagnosed at the age of four, and now at the age of 25, I’ve experienced A WHOLE BUNCH OF STUFF, including lots of abdominal surgery (yes, I’ve had a ileostomy) and medication. I sincerely hope that documenting some of my experiences may help others suffering from IBD, those who have just been diagnosed or just want to understand more about the illness. It’s a confusing and ever changing illness and I must stress that every single person with IBD is individual. What works for one person won’t work for another – there is no IBD ‘path’ – you just have to carve your own story! (So basically, don’t freak out if you’re newly diagnosed and reading this!)

So let’s start with diagnosis, and to be honest, I can keep this pretty brief, seeing as I was four years old and I really don’t remember much! I was on holiday with my family in Wales, when my parents noticed I was getting extremely pale, not eating, losing weight and going to the bathroom A LOT. On one horrible morning when my mum asked me how I was feeling, I told her I was losing blood. I went straight to a hospital in Wales, where I was admitted and quickly transferred over to an expert gastro unit in Oxford, where I was diagnosed with Crohn’s Disease. And that was the start of my IBD journey! I should add here that Crohn’s Disease is an autoimmune disease – it is your immune system malfunctioning.

Steroids, crohns

Let’s ignrore my questionable haircut and my brother’s weird face. On steroids in primary school

In simple terms, the body eats away at the digestive system, causing inflammation, ulcers and bleeding anywhere along the digestive tract. I was at my sickest as a child; I remember countless birthdays and Easters spent in hospital. My first treatment was steroids, which sent me completely bonkers and made me put on weight faster than an inflating balloon. My disease was ravaging my large intestine, and although the steroids worked for a short time, as soon as my dose was reduced, I would start to flare again – big time. I went through cycles of mesalazine, azathioprine and infliximab, but nothing would calm my angry insides.

When I was coming up to about ten years old, I went on my first liquid diet. By this point, the conversations about having to remove my large intestine had been floating around for some months now. It was pretty clear that the disease was extremely resistant– it wasn’t responding to any medication. The liquid diet consisted of drinking cartons of Elemental 028, a nutritional drink designed to be absorbed instantly into the body, with your gut having to do absolutely zero work. As I was about to enter puberty,

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I thought I wore it well tbf. At school age 11

I was required to consume even more of the liquid to ensure my growth wasn’t stunted. It was physically impossible to drink the required amount, and so I would sleep with a tube that went up my nose and into my stomach and the rest of the liquid would be pumped into my body. In the very early days of the liquid diet, it was so traumatising having the tube passed up my nose that I didn’t want to take it out – so I went to school with it. The psychological battle was immense, but the liquid diet was my most effective treatment yet.

Alas, a few weeks after I started eating again, the Crohn’s returned with vengeance and at the age of twelve, I had an ileostomy formed. By this point I was practically begging them to take my large intestine out – I was tired of being constantly sick and living this half life in and out of hospital. Still being so young, they were reluctant to actually remove it all, and hoped that bypassing it via the ileostomy would help it heal. It did not. Nine months later I was back under anaesthetic and had my entire large intestine removed – with the exception of a tiny bit at the rectum. This tiny bit of intestine turned out to be my saving grace. Due to the mechanics of the colon, because I still had that little bit left, there was a chance they could reconnect my small intestine with the end of my large intestine and a chance I could be bag free in the future. To be honest, I think this is what got me through. Although I was desperate to feel better, nothing could prepare me for the emotional and psychological difficulties of living with a bag whilst I was going through puberty. A teenager is self-conscious enough as it is right – without having to worry about part of your intestine sticking out of your stomach! The three years with an ileostomy are a blur now, but it dramatically changed my quality of life. I finally had my life back. I was able to function – I was able to go to school everyday. I was able to hang out with my friends. I didn’t have to take drugs, I could eat what I wanted and I wasn’t at the mercy of my disease anymore.

When I reached the age of sixteen, the ileostomy had done its job and I was rewarded with a bag reversal. Another major operation, reopening my entire 30cm scar and another scar left where the ileostomy once was, but I was completely liberated. FREE FROM A BAG! Lollzzzz but totally not free of Crohn’s. I was actually pretty healthy doing my ALevels and I secured my place at Loughborough University to do a degree in Drama with seeming ease (health wise at least!) I had the most amazing time at university, but during this time, the Crohn’s began to spread to the lower part of my rectum and small intestine, and so I was put on Humira – a weekly injection administered myself. This managed to get the Crohn’s under control, but by my second year I was struggling with repetitive obstructive symptoms. I was in and out of hospital, in and out of A & E, and it came to pass that they had to operate.

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After my sixth operation, I asked my Mum to take this to let me friends know I was ok. Two hours out of surgery, I have no recollection of this being taken!!

Again. They found and closed an internal hernia, as well as adhesions, which were causing the obstructions. A year and a half later, just as I was completing my finals, the obstructive symptoms started again and after a particular memorable experience where I lay in a hospital bed in Leicester, surrounded by my friends and boyfriend who had fled a night out to my aid, I was under the knife again. Looking back, it was perhaps the immense amount of partying (I’m only human!) that took place over these three years that led me to need these two ops. The toll to my body was great and as I was recovering from my fifth operation, I began to ask myself, would these operations EVER stop?

After recovering from this fifth op, I plodded on quite well for a while. I got myself a job at the BBC as a Researcher and plunged myself into the world of commuting and full time work. I’d be lying if I said it was easy, my body took a while to adjust to the exhaustion. After my 21st birthday, a hernia popped up on my scar. LO AND BEHOLD – ANOTHER OPERATION. By this time I was officially at breaking point with being opened up so many times. I remember vividly bursting into hysterical tears in front of the surgeon and asking him, ‘WHEN WILL THIS END?’ I like to think I am an extremely strong individual, but I just couldn’t take any more operations. The isolation of the 8 week recovery alone was enough to send me completely insane, let alone the physical shock of going through all that pain over and over again.

scar 2016

Apols for the faint hearted here, but this was post my sixth op. You can see the little scar from my ileostomy too

I guess the positive of undergoing such repetitive surgery was becoming proud of my scar. It’s 30cm long, stretching from just below my chest to below my pelvis and it’s extremely visible. I wear it loud and proud now and I take the stares on the beach to mean, ‘wow – that girl must be made of steel!!’

I got to spring 2016, when I started to relapse again and I was given the choice, which lead me to start writing this blog in the first place. Sat in front of my gastro specialist, he told me I needed a quick treatment that was guaranteed to work – steroids. I couldn’t do it to my body- I couldn’t do it to my mental health! So I took on the one month liquid diet, which is where this blog was born. It was honestly the best thing I ever did and despite the mental battle, I came out feeling amazing. My skin was glowing and I appreciated the impact of what I put in my body more than ever. I reintroduced food gradually and found I was intolerant to whole food groups by keeping a food diary for weeks, which has further kept my tum happy. You can read my liquid diet journey here. In October, I learnt to meditate – a skill, which my paediatrician had tried to introduce to me during puberty. You can read more about my journey to meditation here.

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Ended up forming quite a bond with my liquid diet cartons

Since then I have taken a short nutrition course, started yoga classes and started experimenting with what I eat and how it feels in my tum. I feel so very grateful for the journey I have come on to where I am today. I whole-heartedly believe everything happens for a reason and my IBD journey was meant to lead me to where I am today. To stand tall, tell my story and be confident in who I am. Because there are thousands of stories like mine that aren’t being shared, or are being misunderstood. IBD ain’t glamorous. Heck, I’d enjoy a day where I didn’t think about my gut – but that is the reality for so many of us living with Crohn’s Disease or Ulcerative Colitis. This is what we live with and we plod on. We make mothers, fathers, partners, friends and colleagues and STILL battle the debilitating symptoms of IBD – with a smile. I dare anyone who is embarrassed or struggling to deal with their IBD to speak out, confide in a friends/family and realise YOU ARE STILL B****Y BRILLIANT. IBD will not rule your life.

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Living and loving life in Bali – wearing that scar loud and proud. YES I’VE BEEN TRAVELLING TOO!

If you’ve got to the end of this epically long post, then thank you so much for reading and I hope you have taken something from my story. I would welcome comments/feedback  (comment below!) and any of your stories. I would love to hear them all.

Happy World IBD Day!

*I know I haven’t just written a book, so to do a thank you sounds weird – but I can’t write this and not mention the amazing care I have received over my entire Crohn’s journey from the gastro team at John Radcliffe Hospital. They have always answered all my questions, listened to me when I have said no, given me VIP treatment and taken the best possible care of me. Brilliant, brilliant team.*

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bryonyhopkins

'Kin' yourself lucky

As usual, this month I have been eating my way through the best gluten free, dairy free and vegan eateries in London and this week I’m sharing one of my all time favourite cafes – and a new little find. 
Kin Café
Price: £
I am completely obsessed with this café. Not least because it is right beside my office, but because the food is absolutely on point. Kin is tucked away about a seven minute walk from Oxford Circus and Great Portland Street tube station. Blink and you would miss it, it is so small, but as soon as you step inside you are greeted with their delicious spread of vegan and gluten free goodies. The breakfast menu is insane and so reasonably priced! The gluten free and vegan pancakes covered in fresh fruit and seeds are to die for, and they can cook it up right there for you to take away and enjoy at your desk. 

pancake to die for

I also regularly enjoy their Chia pudding – also vegan, which is so creamy and topped with different fresh fruit everyday. The menu is also filled with creamy Mexican eggs, overnight oats and every topping on sourdough toast you could think of (including avo!)
 Aside from the breakfast, I would go there just for a matcha latte. The blend of matcha versus milk (I always have almond milk) is so delicious; I could easily drink five in a row. The lunch menu changes daily, always with a vegan twist on a popular classic. Vegan hot dogs for example or vegan crab cakes! 

Matcha latte with almond milk – SO delicious

They also serve the most delicious array of cakes, biscuits and loaves. ALL VEGAN AND GLUTEN FREE! AND NOT DRY AS A BONE! The coffee has also been praised by many of my colleagues – ‘a super smooth blend’, someone actually said to me! At the moment Kin is not open for dinner… but I’m told they are starting a supper club soon..! The great news is that they do cater for parties – and their menu looks divine. Definitely worth exploring if you’re hosting a large do!
So what are you waiting for? Get yo’ arse to Kin.
 Niche
Price: ££
I have to give all credit for finding this place to my boyfriend, who recently took me here for dinner. Situated just near Angel tube station, it is a bit of a pain to find but once you step in, you’re greeted with a very pristine, cute little restaurant. Niche is completely and one hundred percent gluten free – meaning it is a coeliac’s dream! Niche has a typically British menu, with steaks, burgers, pies and bangers and mash featuring strongly. They also had a great list of huge salads. I was so excited at the prospect of being able to eat a dish like bangers and mash, I went straight for the heaviest option on the menu! 

you could choose from 4 different types of sausages!

Sausages typically have gluten in them and I was on cloud nine when I saw they were accompanied with onion rings. Onion rings I could actually eat!
 Unfortunately, our mistake came in that we also ordered starters. And a bread basket. Credit to the waiter, he did warn us that it would be too much food – but we were ‘starving’! I had a delicious light crab salad for starter, whilst Josh had deep fried mozzarella balls (obviously not all things on the menu are dairy free!) 

Avocado and crab starter with bread basket

Although it was light, I was completely overwhelmed with food when the sausages, mash and onion rings arrived. Note here – the portions are HUGE! If you’re going for a big main – you definitely don’t need a starter. OR a bread basket! Sadly I didn’t get to sample the desserts – but I will be sure to go back to try these. 😉 Overall, delicious gluten free food that you wouldn’t usually get to eat – but one hearty main plus a drink is PLENTY enough! Great for evening socialising.
Enjoy!! 

bryonyhopkins

Best allergy eateries

Eating out when you’re gluten free, dairy free, soy free or any other kind of free can be stressful – I’ve already had to become that person who reviews menus before I will confirm I can attend said restaurant! Navigating the menu is just the starting point, then discovering that the waiter/waitress doesn’t actually know what’s in the sauce, or if the fish is fried in butter makes the ordeal so awkward, you think you may as well just stay at home.
BUT NEVER FEAR! I am on a one stop mission to find the best hidden gems of allergy eating in London. See my previous post with four other amazing restaurants Eating out – May favourites– and these next three are a real treat!
WAG Free Kitchen
Price range: £
When my boyfriend proposed this for dinner, I raised my eyebrows too. Why are you taking me to a ‘WAG’ Free Kitchen? Of course, WAG in fact stands for ‘Wheat and Gluten’ and I’m so glad he discovered this buried in the listings of Time Out’s Top Gluten Free restaurants. It’s in Brixton market, a tiny shop with probably only around 10 or 12 tables. The menu was simple British food with a Brazilian twist – burgers, chicken escalope, fresh soups and quinao salads – something for everyone!

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WAG’s venison burger

As soon as I saw the menu I knew I had to take advantage of the rarity of gluten free bread, so I went straight in for the venison burger with crispy wedges, home made mayo and a gluten free bun. It was gorgeous – so simple and so delicious. I was told they usually have a chef there who makes the gluten free bread fresh on site – but unfortunately he was on holiday when we visited. This of course means I have to go back again to try it! At £20 a head, including a Brazilian caipirinha and a gluten free beer for the boyf, this is a totally affordable dinner destination.
NAMA
Price range: £££
NAMA is the home of the raw – artisan raw to be precise. Everything on the menu is totally vegan, gluten free and raw, which means nothing is heated above 46C. Tucked in a small street about ten minutes walk away from Notting Hill, it isn’t in the most easy to find location but the trek is totally worth it. I was firstly impressed by the menu and the descriptions of every dish, for example you can take your pick of ‘Pizza’ or ‘Italian Pizza’, or even ‘Pad Thai’ – old favourites with a raw twist. Originally a small cafe, NAMA is only open for dinner Thursday to Saturday and I attended with a friend who knew the restaurant well.
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On recommendation I went for the Italian pasta – courgette noodles tossed in tomato sauce, with marinaded mushrooms, caramelised onions, black olives, sundried tomatoes and almond parmesan – sounds amazing right?? We also ordered the kale salad as a side to share. Both dishes were delicious and it was definitely an experience eating raw dishes that shared so many similarities with classic dishes I love. The kale salad was so good we ordered another!! Although to be honest, the real highlight of the meal was dessert. A blueberry cheesecake – they’re most popular dish. IT WAS AMAZING! So unbelievably smooth and creamy. I would go back a thousand times over for that cheesecake.
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The creme de la creme of NAMA

At around £35 a head, this is at the upper end of allergy eating and I have to say, I found myself hungry again later in the evening. I would go back to try some of the other dishes but be prepared to spend more – and I would pick this as a perfect cake and coffee place!
Indigo at One Aldwych 
Price range: ££££
Indigo at central London hotel One Aldwych was a find whilst watching Masterchef (yes, I am equally obsessed with watching food programmes). It is a completely dairy free and gluten free restaurant and I was so excited to try it when I saw the celebrities create some of their dishes on the most recent series.
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Starters and main course

The menu is full of so many British classics – gnocci, pasta, fish and chips and steak. We went for lunch set menu, which came to £27 for three courses. I chose the rabbit terrine whilst my Mum had the smoked mackerel gravalax. The rabbit terrine was good – if not a little dry but Mum’s mackerel was delicious. Extremely delicate and tasty, although the portion was tiny! The highlight of this meal was definitely the main course – my steak bavette with fondant potatoes was cooked to perfection and Mum’s aubergine cannelloni was divine. The presentation was incredible, such intricate designs in the courgette flower arranged on top of the rolls, stuffed with a light mushroom tapenade.
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Aubergine cannelloni

Unfortunately the desserts were not as sublime as NAMA – I had a blueberry panna cotta which was light and coconutty and I was happy to finish the lot off. My Mum had a ‘apricot fool’, which turned out to be a very underwhelming coulis with coconut yogurt.
With a glass of prosecco and a mint tea to finished, the bill came to an eye watering £50 a head but it was a overall delicious meal in a gorgeous hotel atmosphere. I would definitely return and would be intrigued to try some of the dishes off the set menu, including the gnocci and the beer battered fish.
Happy allergy dining!!!
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bryonyhopkins

Listening to your body

This is a skill that I have been forced to learn – and boy, has it taken some years. Arguably, learning to listen to your body is the most important step to keeping

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I was completely in tune with my body when I decided to take on the liquid diet. I knew it was the best option for me over steroids.

your body and soul happy and healthy. Yet most people I have spoken to admit they do know their body and the warning signs when things are about to go south – but they struggle to actually do anything about it. Listening to your body is completely useless unless you actually respond to it. Responding is pivotal- and really can work wonders (I am living proof of this!) Let me explain.
What do you mean when you say ‘listen to your body’?
Listening to your body is being in tune with your physical and emotional needs, and learning what you can do to feed and nourish them. On a basic level, this is eating when you’re hungry; sleeping when you’re tired. Yet there are so many levels above this and learning to hear them is a source of great power. It is fact that your body will always give you signs when it is struggling. That niggling cold for example, is the first sign that your body is in distress. Those tears you shed, is a sign that your soul is sad. Equally, it will also tell you when it is flourishing – those endorphins when you see the person you love or the excitement at an upcoming trip or event. Whilst this may seem blindingly obvious – why do we so often ignore these signs? The answer is one word – life.
Life is busy. Too busy. We work hard and long hours. We are constantly tapped into the digital world; social media, work emails, news outlets and celebrity culture. So it is unsurprising that amongst all this noise, our bodies are ignored. It’s boring to rest/take downtime/acknowledge home truths that require unwanted action.
I will hold my hands up and admit I have been the queen of ignoring my body in the past – particularly during university. This has resulted in some disastrous outcomes – including weeks laid up in bed due to fatigue, surgery, flare ups and on one particularly memorable occasion, contracting Mumps (despite having had the jab!!) My body was tired and vulnerable. Unfortunately, that is just through working hard and having a social life. A home truth which I still find extremely hard to acknowledge.
How do I respond to my body?
On feeling warning signs it’s important to evaluate what you can do to stop things escalating. If you have the beginnings of a cold, take time to rest and make sure you get lots of sleep. If you’re feeling tearful – acknowledge why you’re feeling sad and what you can do about it. Unhappy in your job? Find ways to love it or move. Unhappy in your relationship? Address it or leave. Find something that gives you some ME time – yoga, mindfulness, running or cooking. Whilst my examples may be extreme and you probably won’t end up having surgery if you ignore your body, you may end up getting sick, physically or emotionally – and why let it get to that?
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Taking time out on holiday is one my fave ways to unwind and refresh (unfortunately, my bank balance doesn’t allow this to happen as regularly as I’d like!)

I now know that I have to rest when I start getting warning signs – and sometimes I still get it wrong. I have just had to take four days of enforced rest as my body started rejecting all my food – a tell tale sign for me that my body is at breaking point. Utterly exhausted, I knew that if I had pushed through it (which I so often did at university), I would have ended up in a far worse position than just a couple of days off work.
The first step
Is to figure out what makes your body tick and what your body needs to bloom. This could be SO MANY THINGS! It could be a particular diet or exercise. It could be a hobby or spending time with particular people. It could be working a job you love, going on an amazing trip or having a social media detox. In deciphering this – you will also find the things that your body struggles with.For me, it is relentless work and social plans, meaning I have to prioritise how I spend my energy and know when it is time to stop. It is also eating foods that work for me and knowing that my health is THE most important thing. Even more important than the party I really really want to go to!
 
Believe me – I don’t say any of this lightly. It is difficult – but so worth it if you can find your body formula.
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bryonyhopkins

Banging breakfasts

Breakfast is by far my favourite meal of the day and pre diet revolution I was a fry up fiend. Given the unbelievable breakfast offering at my work canteen, I was regularly consuming eggs, bacon, sausage, beans and hash browns (oh godddd it was so good!). It was my utter guilty pleasure.
The only thing I love more than breakfast is brunch. Get me eggs benedict, scrambled eggs with smoked salmon and a well ingredient-ed omelette and I am on happy girl.
So when I started my new diet, I had to find ways to satisfy my breakfast obsession. I’m going to share with you three of my favourite recipes – the vegetarian fry up and two blissful smoothie bowls. God bless the smoothie bowl!!
The clean fry up
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This recipe is vegetarian, gluten free and dairy free.
Ingredients (Serves 1)
Handful of cherry tomatoes
One gluten free bagel/muffin
One egg (or two if you’re hungry!)
One avocado
Handful of kale
Hanful of chesnut mushrooms
One garlic clove
Olive oil
Method
Start by peeling your avocado from the skin and mashing – put this to one side. Then slice up your cherry tomatoes and mushrooms and shred your kale from the stalks. Finely chop a clove of garlic.
Fill a saucepan of water and put it on the hob to simmer. This is for your poached egg – so don’t let it boil!
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Take a fresh egg and pour it into a cup or ramekin, so the White of the egg swirls around the yolk.
Whilst your water warms up, add a glug of olive oil to a frying pan on a medium heat. Allow the oil to warm, before adding your chopped garlic.
Now your water should be simmering at a steady level (turn the heat down if needed to prevent boiling). Pour your egg into the water and put 3 minutes on your timer.
Now add the cherry tomatoes, kale and mushrooms to the garlic and oil mix in your frying pan. Lightly sauté.
Pop your muffin or bagel in the toaster. After three minutes your egg and tomato/kale/mushroom mix should be done! Take all off the heat.
Top your toasted muffin with the avocado, and use a slotted spoon to ease your poached egg out of the water. Put this on top of your avo muffin.
Serve with the garlic-y mushroom, kale and cherry tomatoes. YUMMMMMMM!
The very berry smoothie bowl
I only discovered the smoothie bowl post liquid diet and I genuinely found it revolutionary. I am a huge fan of smoothies, but often don’t find them filling enough. I also love crunchy granola and fruit salad, but often find them dry or plain now I can’t have yogurt. The smoothie bowl combines all these elements and makes an extremely filling breakfast. IMG_3929 (1)The trick is to make a thick smoothie and to balance the heaviest ingredients on top, to create a pretty pattern (not that this is essential for taste.. but it looks nice!) The best part is also that you can basically put WHATEVER YOU want on it – possibilities are endless. Here are two of my favourite combos.
Ingredients (Serves 1)
This recipe is gluten free, dairy free and vegan.
For the smoothie:
300 ml almond milk
Large handful of frozen berries (bag from supermarket)
One banana
Honey
For the toppings: Kiwi, gluten free granola, physalis and blueberries.
Method
This is so super simple. Whizz up your smoothie ingredients in a blender (I swear by my Nutribullet). Slice up your kiwi into medium slices. Pour your smoothie into a shallow ish bowl (not necessary – but helps with toppings sinking!). Arrange your toppings on top – sliced kiwi on the edge as it is the heaviest, follow up the sharp physalis, the crunchy granola and the blueberries. The best thing about this smoothie bowl is the combo of flavours and textures. A total winner!
The tropical smoothie bowl 
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This smoothie bowl will make you feel like you’ve done a one stop shop to the Caribbean! You’ll notice it uses many of the same ingredients as before – showing it is easy to make smoothie bowls on a budget by mixing and matching, whilst still creating new flavours.
Ingredients (Serves 1)
This recipe is gluten free, dairy free and vegan.
For the smoothie: 300ml almond milk
One banana
Large handful of frozen mango
One kiwi
Tbspn honey
For the toppings: strawberries, physalis, blueberries, gluten free granola and desiccated coconut.
Method: Same as above! Whizz together and arrange toppings on top of the smoothie. Start with heaviest on the outside and enjoy the gorgeous kiwi/mango smoothie with a taste of Caribbean coconut!
Let me know what you think!
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bryonyhopkins

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