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Dinner this evening was mushroom and pepper stir fry. Hannah tried some different noodles-these were fresh rice noodles, 4g of protein for half the pack. We used a sweet chilli sauce, usually I make my own but the Sainsbury’s own brand one was <0.5g of protein for half of the sachet so is handy to keep in the cupboard for a quick meal. Her meal was 6g of protein in total. Pre-sapropterin, Hannah used to have low protein spaghetti as her noodle substitute and it worked well. #pku #phenylketonuria #phenylalanine #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #pkudiet #pkufood #pkumeal #pkumealideas #growingupwithpku #sapropterin #sapropterinresponder #kuvan

5/2/2024, 7:36:59 PM

FUCKEN EH!!! ITS ABOUT FUCKING TIME!! #phenylketonuria #lowprotein #pkustrong #phenylketonurie #pkufood #pkudiet #lowproteindiet #phenylalanine #lowpro #vegan #metabolicdisorder #pkulife #vegetarian #raredisease #pkurecipes #lowproteinfood #lifestyle #motivation #pkuproud #life #lowprodiet #food

5/1/2024, 5:06:42 PM

Hannah tried something new today-Sausage casserole I used a plant based sausage, that I know she likes, onions, a pepper and a courgette, garlic, chopped tomatoes, stock and rosemary. Served with buttered Jersey Royal new potatoes. She ate it, I’m not sure she really enjoyed it! For our serving, I removed Hannah’s portion and then added a can of chickpeas as I felt in need of additional protein despite having the plant based sausages. It worked really nicely with the rich tomato sauce. This would probably work well with the Asda plant based sausages, that are 2 exchanges for 2, and could even be served with LP pasta. It was nice and warming as rain came down outside 😬 #pku #pkudiet #pkumeals #pkucooking #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #inbornerrorsofmetabolism #growingupwithpku #phenylketonuria #sapropterin #sapropterinresponder

4/30/2024, 10:14:24 PM

I’m doing a 21 day program that is manageable with my chronic pain. It’s a 30 mins workout, but with the breaks I need to take to let the pain subside, It makes it double the the amount of time. I used to do 90 mins workouts so this is nothing. I hope you know I see you. I see you struggle with what to eat to lose weight. I see you get out of breath when you walk up the stairs. I see you cry in the dressing room when clothes don’t fit and you’re frustrated bc you have to go a size larger. I see you bc I am you. And I’m fighting my way back to healthy. I want you to join me! If you have any questions about my journey or what I’m doing, reach out. I’m an open book! #phenylketonuria #lowprotein #pkustrong #phenylketonurie #pkufood #pkudiet #lowproteindiet #phenylalanine #lowpro #vegan #metabolicdisorder #pkulife #vegetarian #raredisease #pkurecipes #lowproteinfood #lifestyle #motivation #pkuproud #life #lowprodiet #food #pkufit #pkufitness #pkufitnessmotivation

4/30/2024, 4:16:51 AM

I think it's mandatory for PKUers to love salad. I dont think I haven’t met one that doesn't like salad really, but maybe it's because we are kind of forced to eat it cause there is nothing else to eat at a restaurant for instance? I struggle with buying vegetables and not eating them, and there is something so boring about salad with just lettuce and salad dressing. So why not hit two birds with one stone? At a delicious salad AND use vegetables in the fridge. And why would you want to eat a boring salad anyway? I know personally if I don't make it taste good, I won't eat it. This one has butter lettuce, shredded carrot, non dairy cheese, croutons, vegetable rice, salsa, and avocado. I think next time, I'll have to try to sauté some onion and zuchinni in taco seasoning to add to it so it can be more 'taco-ey'. What are your favorite salad toppings? #pku #pkufood #phenylalanine #phenylketonuria #lowphe #phe #lowphefood #lowprotein #lowproteinfood #lowpro #lowproteinsalad #nondairycheese

4/30/2024, 1:37:36 AM

If you need a quick, easy 1 exchange meal, we can’t recommend this enough! Simply soften some veg- we used red onion, red pepper and courgette- whilst your LP pasta cooks. Add the cooked pasta and one quarter of the jar of pesto, stirring to combine. Serve! You could add a little vegan cheese on top. Hannah really enjoys this and we all eat the pesto, it’s very tasty. #pku #pkudiet #pkufood #pkumeals #pkumealideas #phenylketonuria #phenylalanine #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteinlifestyle #lowproteinmeals #growingupwithpku #sapropterin #sapropterinresponder #inbornerrorsofmetabolism

4/29/2024, 8:22:14 PM

@thatpkugirl lunch. So far, only 2g of protein from collagen ad 1g from breakfast. This is free. It’s delicious! #lowproteinlifestyle #lowproteindiet #lowprotein #phenylketonuria #pkufood #lowproteinfood #lowproteincooking #pkulifestyle #pkurecipes #pkustrong #vegan #phenylcetonurie #pkuinfo #phenylketonuriafood #vegetarian #lowproteinconnect #dietforlife #pkulife #healthylifestyle #vitaflo #livingwithpku #veganfood #lowproteinliving #phenylketonurie #pkueatlovers #rarediseaseday

4/29/2024, 7:13:04 PM

Great recipe for PKU-friendly tortillas. They are also gluten-free. The recipe was found at @theloopywhisk The tortillas are delicious and juicy. They are easy to roll and fold without breaking. I used gluten-free pizza flour from Caputo. #pku #pkucooking #pkufood #pkudiet #pkumum #pkuclassic #classicpku #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phe #lowphe #phenylketonuria #raredisease #pkuawarenes #pkumepalliance #pkuforeningenfordanmark #espku #nspku #glutenfree

4/29/2024, 7:09:35 PM

Recently found some cereal loops in the supermarket that are rather on the lower protein side (3.6g protein). It almost feels like a hunt for these products when we go shopping 😜 Colourful, not too sweet and he loves them! Found in Germaat the Superbiomarkt. #pku #phenylketonuria #phenylketonurie #lowprotein #lowproteinlife #lowproteinfood #turtlecereals

4/29/2024, 8:57:46 AM

Handmade Hannah a loaf of LP bread this afternoon. We are out of our @promin_metabolics bread freezer stash and I’m not sure when her next dial-a-chemist delivery is as you don’t get a notification until the day it is being delivered! It’s been ages since I made a loaf by hand, for efficiency and a guaranteed outcome I usually use the breadmaker. I used Fate mix and I totally messed up, forgetting to add salt until I’d started mixing and letting it prove in the bowl instead of the loaf tin, however the outcome was great! 🤷🏻‍♀️ Hannah tucked in as soon as it was cool enough to cut and had it with butter which she enjoyed. This evening she’s had it toasted with mushrooms on. I feel like I’ve spent a lot of the day in the kitchen, prepping and cooking a roast, making and baking bread and organising packed lunch bits so if that’s been your Sunday too, you aren’t alone! ❤️ #pku #phenylketonuria #phenylketonurie #phenylcetonurie #phenylalanine #pkudiet #pkubaking #pkucooking # #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #growingupwithpku #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan #lowproteinbread

4/28/2024, 9:09:27 PM

Sunday lunch today! Hannah had: Veggie sausage-6g (could be subbed for a fate sausage or sausages made with Promin mix.) Yorkshire pudding-1.5g New potatoes roasted with rosemary-2g Carrot & sweet potato crush-free Peas-2g Covered with gravy- free #pku #pkudiet #pkufood #pkumeals #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phenylketonuria #phenylalanine #growingupwithpku #inbornerrorsofmetabolism

4/28/2024, 5:26:06 PM

Welcome to a new series of posts where we highlight some lower protein options that are available to pick up in the supermarket and give you some ideas on what to make with them! We are starting with desserts! I hope these posts will be something you can share with friends and family who might want to cook for you/your little one but might not be sure where to begin! Please let me know if you find this post helpful and would like to see more. ❤️ Pics 1-4: Many @judesicecream products are suitable! The watermelon and rocket lollies are protein free! Custard 0.1g per 100g. Minis 0.4g, the ice creams vary. (Nothing more than 1.5g per serving though!) Pic 5: @kirstys_official apple pie slices, 0.8g per slice! Served with Jude’s custard and it’s less than 1g 😍. Pic 6: @justwholefoods jelly mixes! Protein free. Perfect for fruity jellies or a nice trifle with LP sponge on the bottom! Pic 7: @freedomconfectionery mallows! (They are even marked suitable for PKU 🥰) Perfect to top ice creams or, as we’ve done in the past, to decorate LP birthday cakes! Pic 8: @instafoodheaven squirty cream! Protein free & so many options for using this, with fruit, on waffles, on milkshakes and on top of a trifle with some Jude’s custard layered below. Pic 9: @londonapron plant based meringues! Perfect for Eton Mess- with strawberries and Food Heaven squirty cream 🍓0.5 per box! As always, please check with your dietician if you are unsure if these items are suitable for you! #pku #phenylketonuria #lowprotein #pkudiet #lowproteindiet #lowproteinfood #accidentallylowprotein #pkufood #growingupwithpku #pkudesserts #lowproteindesserts

4/27/2024, 3:20:01 PM

Happy birthday an unsre Große, an alle mit PKU, an alle Mamas und Papas mit PKU-Kinder! 💙 Für mich immer ein besonderer Tag, der einem auch bewusst macht wie gut man es oft hat, trotz allem! Es gibt Kuchen, Kerzen und Geschenke, es fehlt also nichts! 💙 #werbung #phenylketonurie #simple #healthy #lowpro #lowprotein #mevalia #meavliaLP #vitaflo #phenylketonuria #pku #pkufood #pkurecipes #lowproteinfood #pkustrizi #pkuvienna #pkuaustria #pkuwien #phenylketonurie #foodlovers #pkuinfo #health #healthyfood #vegansofaustria #vegansofig #igersaustria #igersvienna #pku #vienna #instagood

4/27/2024, 1:20:39 PM

Friday night fakeaway for us! 2 exchanges for Hannah’s sweet potato curry, 3 exchanges for rice which could be subbed for LP rice, plus 2.5 exchanges for pitta bread (I had some to use up) which could be swapped for flatbread made with LP flour and coconut yogurt. I also made a separate chickpea curry for us non-pku people. Whilst Hannah does like chickpeas, today they were a no for her as she didn’t have allowance left to have both pitta and chickpeas. We all really enjoyed this, despite me not really feeling like I wanted to cook this evening 😬 #pku #phenylketonuria #phenylalanine #pkudiet #pkufood #pkumeals #pkucooking #lowprotein #lowproteindiet #lowproteinfood #lowproteinmeals #lowproteincooking #growingupwithpku #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan

4/26/2024, 10:11:50 PM

Sandwich maaqouda Sandwich de la street food marocaine Trop bon . Une bonne sauce tomate avec les épices que vous voulez, poivrons et aubergines fris et bien sûr la fameuse "maaqouda" galette de pomme de terre. #latyrosinemie #lowproteinfood #vegetarian #veganfood #pcu #pku #التيروزينيميا #اكل_نباتي #فينيلستنوريا

4/25/2024, 3:43:45 PM

Słońce przybywaj ! Z utęsknieniem czekamy na ciepełko które zbliża się małymi kroczkami w stronę Szczecina ⭐️ już za chwilę, już za moment będziemy cieszyć się piękną pogodą ⭐️ no bo nie ma co ukrywać ale w takie deszczowe dni to co tu robić ? Staram się jak mogę ale czasami już brakuje pomysłów 🫠 a wy jakie macie pomysły na deszczowe dni ? #deszczowedni #nudynapudy #nudywdomu #zabawawdomu #nutriciaconnect #vitaflo #nutriciametabolics #pkukid #pkubaby #pkugirl #klarusiowe #klara #pkudiet #pkulife #pkulifestyle #pkulifè #pkulifè #pku #fenyloketonuria #fenyloketonuriaklasyczna #lowprotein #lowproteindiet #lowproteinfood #nutriciamedical #fenymenalni #fenymenalnimotywują #fenymenalnijedza

4/25/2024, 3:22:47 PM

My first time making muffins! I used @vitaflo_vitafriendspku_au recipe for blueberry muffins, and then switched out the blueberries for apple and cinnamon ones as well. I also added streusel (like a crumble) on top for some crunch, made with the FATE all purpose mix, sugar, and dairy free butter. They tasted amazing, and don’t contain any protein! . . . #pku #phenylketonuria #lowpro #lowprotein #lowproteinfood #lowproteindiet #lowproteincooking #muffins #vitaflo

4/24/2024, 12:17:48 PM

Vegan and pku-friendly omelette with vegetable filling and vegan cheese. #pku #pkucooking #pkufood #pkudiet #pkumum #pkuclassic #classicpku #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phe #lowphe #phenylketonuria #raredisease #pkuawarenes #pkumepalliance #pkuforeningenfordanmark #espku #nspku

4/23/2024, 4:01:56 PM

For everyone who has requested it, here is our chilli recipe. You can adjust vegetables used, I sometimes use celery in place of courgette. Diced aubergine would also work. I should also have said to stir it regularly whilst cooking. Hannah used to have this without the red kidney beans for a free meal, when served with LP rice. It is also delicious as a topping on homemade potato wedges with vegan cheese or in a jacket potato! The fajita seasoning I use is either from Sainsbury’s or Waitrose. It comes in a small glass jar and can be found with herbs and spices- not a sachet that comes with a fajita kit. Enjoy! #pku #phenylketonuria #pkufood #pkudiet #lowprotein #lowproteincooking #lowproteinfood #lowproteindietforlife #lowproteinrecipe #lowproteinmeals #growingupwithpkurecipes #growingupwithpku #inbornerrorsofmetabolism #phenylalanine

4/23/2024, 11:39:06 AM

Low-protein mini pancakes. Delicious and juicy. Served with fresh fruit. The flour I used is from @nogluten_storvorde #pku #pkucooking #pkufood #pkudiet #pkumum #pkuclassic #classicpku #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phe #lowphe #phenylketonuria #raredisease #pkuawarenes #pkumepalliance #pkuforeningenfordanmark #espku #nspku

4/23/2024, 10:50:22 AM

As we’ve had so many requests, here is the recipe for the muffins Hannah baked this evening. Please note that the chia seeds need counting-we used 1 teaspoon, which on the pack we have, amounts to 1g of protein. We also used Asda sugar free oat milk which amounts to 2g of protein. So the entire batch was 3g of protein so each muffin is 0.25g of protein. As always please calculate based on the ingredients you use. #growingupwithpkurecipes #pku #pkurecipes #pkucooking #pkubaking #lowproteincooking #lowproteinfood #lowprotein #pkudiet #growingupwithpku #inbornerrorsofmetabolism #phenylalanine #phenylketonurie #phenylcetonurie #phenylketonuria

4/22/2024, 9:13:45 PM

Da sempre cerchiamo i prodotti migliori per le vostre esigenze. Se segui una dieta a basso contenuto proteico, queste tagliatelle sono perfette per te. Con solo 0,4 g di proteine per porzione, puoi goderti il pasto senza preoccupazioni. Ricche di fibre e con un bilancio calorico ottimale, sono la scelta ideale per un piatto sano e delizioso. Le tagliatelle @flavis_it : Gusto e benessere per tutti! #farmaciamontecalcoli #castelnuovomagra #Flavis #Tagliatelle #LowProtein #lowproteindiet #lowpro #pkudiet #lowproteinfood #lowproteincooking

4/22/2024, 6:47:09 PM

Homemade low-protein lasagna. The recipe has gradually been adapted and tested so many times that it succeeds every time #pku #pkucooking #pkufood #pkudiet #pkumum #pkuclassic #classicpku #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phe #lowphe #phenylketonuria #raredisease #pkuawarenes #pkumepalliance #pkuforeningenfordanmark #espku #nspku

4/22/2024, 6:35:33 PM

Avocado sandwich in a homemade low-protein carrot bun #pku #pkucooking #pkufood #pkudiet #pkumum #pkuclassic #classicpku #lowpro #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phe #lowphe #phenylketonuria #raredisease #pkuawarenes #pkumepalliance #pkuforeningenfordanmark #espku #nspku

4/22/2024, 6:32:39 PM

A little packed lunch haul for Hannah for this week, with a few new things to try. First off, I grabbed some packs of fruit- more watermelon, some green grapes (all they had and she will moan but will eat them anyway 😂) and some blueberries plus a net of clementines and some bananas. We found some really nice seeded rolls in Asda, 2.8g each. You’d hardly know they were gluten, dairy and egg free! They are also fortified with iron & calcium which is great to see. Dried apricots and dates- she loves adding these to her weetabix or porridge and can take a few to have with her lunch. A new oats and honey brunch bar- really handy for an on the go snack. 1.7g each Some Nairns fruit and oat biscuits, not sure these will be a hit but 1g each and in a handy portion pack for her to take to school. I do tend to make some homemade bits too each week but they don’t last long around here! 🤣 She has a quite short lunch break and often eats on the go so I try to send things with that in mind. She drinks a whole Sphere liquid at lunchtime too, so some days then feels too full and doesn’t eat much- hard to get the balance really. 😬 #pku #pkudiet #phenylalanine #phenylketonuria #lowprotein #lowproteindiet #lowproteinfood #growingupwithpku #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan

4/22/2024, 4:26:19 PM

At the ‘rents, and I’ve been doing some thinking. It’s always nice when someone makes a PKUer something to eat and takes the burden off them. My mom did the cooking this weekend, and I so appreciated it. I really miss the days when I didn’t have to worry about what I ate bc someone did it for me. We need to talk about what a burden this diet is when you become an adult. I was never shown how to take care of my diet. My mom, one day, just stated she wasn’t doing it anymore. I was 24. It’s very hard to believe, with my health issues from being off diet, that I don’t have brain damage; and that what I eat doesn’t damage my brain. I’m scared each time I eat that I’m killing my brain. I don’t know why. It’s something that’s developed since 2017. MRI shows “no significant findings” of any reason something is wrong with me. I almost asked the secretary that called do you have the right medical report bc I know something is wrong. It’s not normal to just one day, out of the blue, start forgetting things, not be able to understand straightforward information, to have severe anxiety about food, and to confuse words and forget grammar rules when grammar was my best subject. Yet….here we are. Anyway, I’m jumping back on my diet and I’m not going to focus on calories. I’m going to search out different foods. I’m going to workout. Food is so stressful. I would give almost anything to not care about what I eat. What a burden PKU is, especially when you want to lose weight. #pkudiet #phenylketonuria #lowprotein #pkustrong #pkufood #phenylketonurie #pkulife #pkurecipes #pkuproud #metabolicdisorder #pkuinfo #livingwithpku #phenylalanine #vitafriendspku #pkulifestyle #lowproteinfood #lowproteindiet #lowpro #lifestyle #pkuhits #vitaflo

4/21/2024, 4:41:34 AM

What’s a weekend at Grammy’s without chocolate chip cookies?? 🍪 1 cookie is .5 grams of protein. #pkucookies #lowproteinfood #cherrybrookkitchen #glutenfree #dairyfree #pkubaby

4/21/2024, 3:42:36 AM

Sehr schöne Freizeitaktivität auf Usedom: die @_phaenomenta 🌈 die Pku-Crew hat Spaß! ☺️ #pkurecipes #pkugermany #pkurezepte #pkupodcast #pkulife #pkuadult #pkucommunity #pkustrong💙 #pku #raredisease #rarediseaseday #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #lowproteinconnect #livelifewell #lowproteinconnect

4/20/2024, 3:35:46 PM

So ein schönes Wochenende 💯🫶🏼 Danke für eure Offenheit und die guten Gespräche! Und danke an @chefmaxhermann und seinen Kollegen Nicolas aus Frankreich für die grandiose Verpflegung hier auf Usedom. Kennst du schon unseren PKU-Podcast? 14 Folgen sind bereits online. Hör also gerne mal rein. Link in Bio 🎧 #pkurecipes #pkugermany #pkurezepte #pkupodcast #pkulife #pkuadult #pkucommunity #pkustrong💙 #pku #raredisease #rarediseaseday #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #lowproteinconnect #livelifewell #lowproteinconnect

4/20/2024, 8:53:24 AM

A quick meal today! Asda free from red pesto (1 exchange for quarter of a jar) served with stir fried onions, red pepper and brocolli, tricolore fusilli and topped with garlic, chilli & basil cannellini beans. Hannah’s meal came to 10 exchanges as she had 15 left when home from school-not having a hungry day today. 😱 She had GF pasta for 6.5 exchanges, easily subbed for LP pasta, 0.5 for brocolli, 1 for pesto and 2 for the beans. #pku #pkumeals #pkudiet #phenylalanine #phenylketonuria #phenylketonurie #phenylcetonurie #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #growingupwithpku #sapropterin #sapropterinresponder #kuvan #inbornerrorsofmetabolism

4/19/2024, 9:05:14 PM

Best hoody ever! ❤️🫶🏼💯 #pkuwarrior #pkurecipes #pkugermany #pkurezepte #pkupodcast #pkulife #pkuadult #pkucommunity #pkustrong💙 #pku #raredisease #rarediseaseday #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #lowproteinconnect By @lulalululu15

4/19/2024, 7:26:11 PM

It’s almost the weekend… so what better time to try out this super quick and tasty jackfruit curry with Mevalia low protein rice 🍛 It’s a must try!😋 Recipe link in bio. #lowproinspo #vitafriends #lowproteindiet #lowproteinfood #Vitaflo #lowproteinlifestyle #lowproteincooking

4/19/2024, 2:00:00 PM

Wir freuen uns auf Alexandra Jung von der Charité Berlin. 🙂 Sie gibt heute gute Tipps zum Wiedereinstieg in die Pku-Diät. #pkurecipes #pkugermany #pkurezepte #pkupodcast #pkulife #pkuadult #pkucommunity #pkustrong💙 #pku #raredisease #rarediseaseday #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #lowproteinconnect

4/19/2024, 10:14:43 AM

Erster Vortrag zu einem wirklich wichtigen Thema für PKU-Patienten 💯 Wie freuen uns über Prof. Dr. Martin Merkel vom Endokrinologikum Hamburg. Im Erwachsenenalter wird die PKU gerne mal vergessen, weggeschoben und ignoriert. Heute erfahren wir anhand von Fallbeispielen, was die Nichteinhaltung für Auswirkungen haben kann und warum es sich trotz innerem Schweinehund lohnt, sich mit der Diät auch im Erwachsenenalter zu arrangieren. Außerdem zeigt er uns heute Studienergebnisse aus verschiedenen Ländern und berichtet, wie weit die Forschung im Bereich der Behandlung von PKU ist. #pkurecipes #pkugermany #pkurezepte #pkupodcast #pkulife #pkuadult #pkucommunity #pkustrong💙 #pku #raredisease #rarediseaseday #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #pku #lowproteinconnect #stoffwechsel #phenyalanine #stoffwechselerkrankung #martinmerkel

4/19/2024, 9:46:06 AM

Auch die wunderbaren Produkte von @katrinskueche gibt's an diesem Wochenende zum Probieren! 💯 Tolle eiweißarme Leckereien ❤️ mit Liebe und natürlichen Zutaten zubereitet und vor allem: für euer gesundes #pkulife geeignet. Ihre Produkte gibt's im Beigabenprogramm von Vitaflo oder direkt über ihre Website: katrinskueche.de #pkurecipes #pkugermany #pkurezepte #pkudiet #pkufriendly #pku #pkulife #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #raredisease #rareisstrong #rareisproud #pkuadult @vitafriendsde

4/18/2024, 3:06:36 PM

😋 Sieht schon mal gut aus. 🌈 Fehlt nur noch ihr. 🫶🏼 #pkucamp #pkurecipes #pkugermany #pkurezepte #pkupodcast #pkulife #pkuadult #pkucommunity #pkustrong💙 #pku #raredisease #rarediseaseday #lowproteinfood #lowproteinlifestyle #lowproteinlife #lowproteincooking #lowproteinconnect #livelifewell

4/18/2024, 10:53:40 AM

5 veg chilli, plus black beans (2 exchanges), quinoa (2 exchanges) and some tortilla chips to scoop it up with! 😋 (3 exchanges) The chilli itself is free and when served with LP rice sub, it can be a completely free meal! Hannah really enjoyed it! #pku #phenylketonuria #phenylalanine #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #lowproteinlifestyle #pkumeals #pkufoodideas #pkufood #pkucooking #growingupwithpku #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan

4/16/2024, 7:47:22 PM

An old recipe but one that Hannah’s enjoyed, both making and eating! They come together quite quickly and are sweet and crunchy with a nice cinnamon flavour! #pku #phenylalanine #phenylketonuria #growingupwithpkurecipes #pkubaking #pkucookies #lowprotein #lowprotiendiet #lowproteinfood #lowproteinbaking #lowproteinrecipe #growingupwithpku #inbornerrorsofmetabolism

4/16/2024, 10:35:34 AM

Root veg Thai red curry with turmeric rice. This is a favourite in our house at the moment! It cooks in the oven, in one dish so is great as can just be left to cook with little intervention. Ingredients used are in the second picture. I counted these towards her allowance. Her whole meal was 5 exchanges. #pku #pkudiet #pkufood #phenylketonuria #pkumeals #pkucooking #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #sapropterin #sapropterinresponder #growingupwithpkurecipes #inbornerrorsofmetabolism

4/15/2024, 9:26:06 PM

A little veggie love from a teriyaki restaurant that has mostly meat and fish dishes. Who doesn't love a vegetable sushi roll? I also love the cucumber rolls and avocado rolls as well. But have you ever tried the vegetable tempura sushi roll??? I've only had it once, but boy, was it memorable in all the right ways! This particular vegetable sushi roll was accompanied by a VERY garlicky stir fry as you see to the left. You can never have too much garlic in my honest opinion. #pku #pkufood #phenylalanine #phenylketonuria #lowphe #phe #lowphefood #lowprotein #lowproteinfood #lowpro #nophe #vegetablestirfry #koibito #japanesecuisine

4/15/2024, 6:30:23 AM

Chilled Saturday breakfast! We love waffles so whipped up another batch! Hannah’s had hers topped with chocolate spread and served with fresh blueberries and watermelon! Yum! 2 exchanges each. #pku #pkufoodideas #pkumeals #pkudiet #phenylalanine #phenylketonuria #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #lowproteinbreakfast #sapropterin #sapropterinresponder #kuvan #growingupwithpkurecipes #growingupwithpku #vegan #plantbased #glutenfree #eggfree #inbornerrorofmetabolism

4/13/2024, 10:40:22 AM

Friday night fakeaway! I made some veggie curries, basmati rice, naan and cucumber salad. Hannah’s curry was free but as she had some protein left I added 3 exchanges of chickpeas, you could leave those out. She also had 4 exchanges of rice, which could be subbed easily for LP rice substitute. The naan was made using GF flour (you can sub for LP flour) and @coconutcollab plant based yogurt. Her entire meal totalled 8 exchanges. For us, I made a chickpea curry and we shared all the sides Hannah had, plus a dollop of yogurt! A really tasty meal and full of veggies! #pku #pkudiet #pkumeals #pkucooking #lowprotein #lowproteincooking #lowproteindiet #lowproteinfood #gf #vegan #plantbased #growingupwithpku #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan #phenylalanine #phenylketonuria

4/12/2024, 9:56:26 PM

This has been our go to yogurt since day 1. It is a great, EASY, low protein starting food when my daughter was younger. Would be great for low pro smoothies and desserts. It comes in so many flavors and I always can find it at our local Target or Whole Foods @so_delicious #pku #pkufoodideas #pkurecipe #pkuawareness #lowprotein #lowproteinfood #lowproteincooking

4/12/2024, 7:07:56 PM

Ready for ski picnic 🍓🥐 #pkupicnic #pkulunch #lowproteinfood #nizkobielkovinove #lowproteindiet

4/12/2024, 5:35:49 PM

Easy dinner this evening because I’m full of cold! 🤧 @white_rabbit_pizza_co vegan Margherita-2 exchanges, onions rings-2 exchanges, jackfruit and oyster mushroom tempura-1 exchange and some basil marinated olives-free. #pku #phenylketonuria #phenylalanine #pkudiet #pkufood #lowprotein #lowproteindiet #lowproteinfood #lowproteinlifestyle #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan

4/11/2024, 8:59:57 PM

U nas nie ma lipy 😉 za każdym razem chce ją czymś zaskoczyć żeby nie było nudno, mam tylko nadzieję że pomysły się nie skończą 🤭 jak narazie w internatach jest tyle do kupienia że na dobre kilka lat nie muszę się tym martwić 😜 #pku #pkudieta #pku #pkuconnect #pkulover #fenymenalni #fenymenalnijedzą #pkukuliner #pkueatlovers #nutriciaconnect #fenyloketonuria #fénylő #fenyloketonuriaklasyczna #fenyloketynuria #fenyloalanina #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #lowproteinlifestyle #lowproteinliving #lowproteinlife #niskobiałkowe #niskobiałkowenowości #niskobiałkoweprzekąski #niskobiałkoweprzepisy #wege #wegeobiad #wegetarianizm #noegg #nomeat

4/11/2024, 4:53:07 PM

Plant based sausage and mash this evening, it’s been so cold here today! The sausage was 6 exchanges (but Asda do some vegetable based ones that are 2 exchanges) 2 exchanges of mash, 1 of brocolli plus carrots, green beans and babycorn which are free. Served with mushroom gravy. #pku #pkumeals #pkufood #pkucooking #phenylketonuria #pku #phenylketonurie #phenylcetonurie #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #lowproteinlifestyle #growingupwithpku #sapropterin #sapropterinresponder #kuvan #inbornerrorsofmetabolism

4/10/2024, 9:18:46 PM

A few meals Hannah’s enjoyed lately that hopefully offer some inspiration… Pasta with homemade arrabiatta sauce. The sauce was free, 6 exchanges for tricolore GF pasta, you could sub this for LP pasta for a free meal. Butternut squash risotto, 7 exchanges for arborio rice but you can make risotto using LP rice substitute and it works well and would be free. Noodles with veggies and a homemade sweet chilli sauce. We used onions, cabbage, carrots, mushrooms and pepper-all free. 1 exchange for tamari in the sauce, Amoy brand soy sauce is lower in protein. We used a supermarket own brand of noodles for 6 exchanges, mung bean noodles, which a very low protein, or LP spaghetti or linguine also works well for a low exchange meal. Lentil spaghetti bolognese. The lentils added totalled 3 exchanges, these can be left out entirely. We used GF spaghetti which is easily swapped for LP variety. The vegetable based sauce was free. You can add as little or as much lentils as needed or leave them out entirely for a free meal. Finally, using up things in the freezer dinner! Hannah had strong roots spinach bites for 2.5 exchanges, hash browns for 3, 2 exchanges of beans and some mushrooms which were free. Swap potato hash browns for strong roots cauliflower ones (1.5 exch) or make sweet potato wedges, swap beans for some roasted baby plum tomatoes. Could be as low as 2.5 exchanges. #pku #pkufood #pkudiet #pkumeals #pkucooking #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #inbornerrorsofmetabolism #phenylketonuria #phenylketonurie #phenylcetonurie #growingupwithpku #sapropterin #sapropterinresponder #kuvan

4/10/2024, 3:58:43 PM

Have on my wearable vitamins! No protein? No worries! I got you covered! ✨Better sleep ✨Increased energy ✨Less brain fog ✨Less groggy ✨Better mood ✨Easier time waking up If these are things you need help with, please reach out and we’ll get you hooked up with the wearable vitamins I wear or we can find a bundle that would serve you better! Have a great day, Peeps! ✌️ #phenylketonuria #lowprotein #pkustrong #eiwei #phenylketonurie #pkufood #pkudiet #lowproteindiet #phenylalanine #lowpro #vegan #metabolicdisorder #pkulife #vegetarian #raredisease #armedi #pkurecipes #lowproteinfood #lifestyle #motivation #pkuproud #life #lowprodiet #rung #alinapku #stoffwechselst #food

4/10/2024, 1:39:58 PM

Guten Morgen zusammen 🥰 Na, habt Ihr ausgeschlafen heute? Das will ich doch hoffen, denn hier kommt die zweite Einladung zu der Aktion " Wir im Norden ", die ich Euch schon angekündigt habe und dabei wollen wir wieder zusammen den Kochlöffel schwingen. Zusammen mit meinem Kollegen Christian lade ich Euch herzlich ein, mit uns zusammen in Bremen zu kochen und zu backen. Die Einladung richtet sich an alle mit PKU oder verwandten Eiweißstoffwechselstörungen. Pro Betroffenem darf eine Begleitperson mit gebracht werden. Habt Ihr Lust ? Dann meldet Euch schnell an bei mir mit Namen, Anschrift, Name und Alter des Betroffenen sowie Name des behandelnden Zentrums. Ich freue mich darauf, mit Euch gemeinsam die Sommerküche zu entdecken. Sehen wir uns ? Wir freuen uns auf Euch 🥰 Eure Andrea und Euer Christian #pkunaund #pkustrong💙 #vitafriends #vitaflo #pkulifestyle #lowproteinfood #lowprotein # #phénylketonurie #pkulife #antschispkuküche #msud #ahornsirupkrankheit #eiweißarm #lebenmitpku #pkusupport #pkukochen

4/10/2024, 8:10:36 AM

トマトクリーム　フッジリで無農薬のディルが良い香り茄子トマトチーズはグラスフェッドのモッツァレラ #aproten #lowprotein #lowproteinfood #lowproteincooking

4/9/2024, 3:18:55 PM

Hannah’s roast dinner today… I made her mashed potato and carrot (potato weighed first, 2 ex) with roasted cauliflower, peas and mushroom gravy. Plus 2 Yorkshire puddings as she had enough exchanges left-8 exchanges in total and very much enjoyed! #pku #pkudiet #pkufood #pkucooking #pkumeals #phenylalanine #phenylcetonurie #phenylketonurie #phenylketonuria #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #growingupwithpku #sapropterin #sapropterinresponder #kuvan

4/7/2024, 9:37:03 PM

Dinner at @thekyn_torquay on a PKU diet 🍅 We were away down the coast again for the Easter long weekend. Going out for dinner on Easter Sunday Hudson had his usual chips 🙊 but we also checked out the menu for something else fresh he could eat. The Kyn team kindly made this delicious tomato dish ‘deconstructed’ for us, with the higher protein ingredients on the side, and it made this mumma very happy to have something other than chips on Hudson’s dinner plate! #eatingoutwithpku #phenylketonuria #lowprotein #lowproteinfood #thekyn #torquay #familytime #easterweekend #lowproteindiet #education

4/7/2024, 12:43:20 PM

Saturday night fakeaway! Made a really delicious vegetable masala for Hannah and a chickpea and spinach masala for us! Served with basmati rice. So full of flavour and thoroughly enjoyed! I used up the veg I had in the fridge, ended up being all orange-orange pepper, carrots and sweet potato for Hannah’s. Curry was free but 4 exchanges for rice, easily swapped for LP rice substitute. #pku #phenylketonuria #phenylcetonurie #phenylketonurie #pkudiet #pkufood #pkumeals #pkucooking #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #lowproteinlifestyle #lowinproteinhighintaste #growingupwithpku #sapropterin #kuvan #sapropterinresponder

4/6/2024, 9:49:24 PM

Haven’t done this in a while so here’s a full day of eats on 29g! Breakfast- vanilla porridge with chopped dates, chia seeds with some M&S cookies and crème choc spread. 5.5 exchanges. Snack- a slice of LP blueberry loaf with some red grapes. Free. Lunch- small roll with vegan cheese, a mushroom and spinach savoury roll, a few Pringles, cucumber, tomatoes and olives. 8.5 exchanges. A bit of her Easter chocolate. 2 exchanges. A pack of yogurt coated strawberries. 0.5 exchanges. A slice of whole meal toast with a sliced banana and honey. 5 exchanges. Dinner- noodles with cabbage, carrots, courgette, mushrooms, onions and red pepper in a homemade sweet chilli sauce. 7 exchanges. Cinnamon apple “crisps” and an Oreo. 0.5 exchanges. #pku #pkudiet #pkufood #pkumeals #lowprotein #lowproteindiet #lowproteinfood #lowproteincooking #phenylalanine #phenylketonuria #phenylketonurie #inbornerrorsofmetabolism #sapropterin #sapropterinresponder #kuvan #growingupwithpku

4/3/2024, 8:19:02 PM

Let's take a second to thank @ajinomoto_cambrooke on making mac and cheese that looks and tastes like the real thing. They have their cheese sauce recipe on lock. Also, can we all appreciate having a low protein food nearly identical to the real thing? It really does make a huge difference #pku #pkufood #phenylalanine #phenylketonuria #lowphe #phe #lowphefood #lowprotein #lowproteinfood #lowpro #nophe #lowproteinmacncheese

4/3/2024, 7:43:48 PM

Some low protein cooking over the last couple of days… Root veg (& lentil) shepherds pie, green beans and kale. Omit lentils and it’s a great low protein option, could even top with sweet potato mash or a combo of both to lower protein further. I made some GF,DF and eggless waffles and then decided to try to recreate them using LP Fate all purpose mix. As pictured, they came out perfectly and Hannah said they were almost the same as the non-LP version. (Recipe shared on stories) As I had an open pack of Fate mix and some blueberries to use up, I made a low protein blueberry loaf cake. I actually adapted a Fate recipe for blueberry muffins for this. I also omitted 50g of sugar but then sprinkled a little on top with cinnamon to make a crunchy top. I also chose to use oat milk as opposed to the suggested fruit juice. Hannah’s so happy with this cake and initially didn’t realise it was made with her LP flour as it was so soft and fluffy! Hannah is so hungry at the moment and clearly growing loads. I always say this but it is so important that children with PKU get used to LP food options like the flours, breads and pasta, as well as a huge variety of fruits and vegetables when they are young. As they grow you do become more reliant on these when appetite increases. Even on 29g ( and just because she’s enjoyed these options her entire childhood) we still need our LP foods to supplement her less restricted diet. We are thankful to live in a country that makes this possible, I know so many don’t have these options. #pku #pkudiet #pkumeals #pkufood #pkucooking #lowprotein #lowproteindiet #lowproteinfood #growingupwithpku #inbornerrorsofmetabolism #phenylalanine #phenylketonuria #phenylketonuriafood #sapropterin #sapropterinresponder #kuvan

4/2/2024, 5:45:34 PM

Homemade waffles, free of gluten, dairy and eggs. 3 exchanges per waffle. I used gf flour, I’m wondering if you could substitute it like for like with low protein flour. In fact I am going to try it and will report back! #pku #pkudiet #pkufood #lowproteindiet #lowproteinfood #lowproteincooking #phenylketonuria #growingupwithpku #sapropterin #sapropterinresponder

4/2/2024, 12:45:59 PM

Levels and life lately... Hannah’s had a mixed bag of levels this month. She’s also been incredibly hungry, very tired and had a few days where eating was tricky due to her brace. Thankfully that’s settled now so hoping to see better control next month. She enjoyed sampling lots of different chocolate over Easter and we got creative with her breakfast! We’ve had a trip to the RAF museum in London, to celebrate her grandad’s birthday, where she was happy to have some chips (and we didn’t think to take a picture) it was a great day out! Finally, our garden is waking up and there’s some colour to be seen-winter seemed so long this year. Hannah’s enjoyed some new foods-colourful harissa spiced bean & veggie stew, vanilla porridge with sliced banana and chia seeds and maple roasted carrots (she didn’t like the carrots one bit!) And she’s decided that she actually does like hot cross buns and we found some lower protein ones in Asda which she been enjoying toasted with lots of vegan butter! 1.4g per hot cross bun! #pku #phenylketonuria #pkudiet #pkufood #lowprotein #lowproteindiet #lowproteinfood #growingupwithpku #phelevels #inbornerrorsofmetabolism #sapropterin #sapropterinresponder

4/1/2024, 4:32:57 PM

Juhu, der April ist da!!! Nun sind wir richtig angekommen im Frühling, man ahnt schon den Sommer und im Mai ist DER Spargelmonat schlechtin. Letztes Jahr hatte ich eine tolle Spargelsuppe für Euch als Vorschlag im Ostermenü, und im vorletztem Jahr eine Spargelquiche. Dieses Jahr möchte ich Euch noch ein anderes Spargelrezept ans Herz legen: Grüne Spargelpasta 200g grüner Spargel 200g Zucchini 80g Avocado TL Limettensaft 20ml Gemüsebrühe 1 Prs. Salz 1 Prs. Pfeffer 120g Mevlia Spaghetti 1 TL Olivenöl Salz, Pfeffer Spargel waschen, das untere Drittel schälen und Spargel in Stücke schneiden. Zucchini waschen und in sehr feine Scheiben schneiden. . Für das Pesto Avocado Fruchtfleisch mit Limettensaft, Brühe, Salz und Pfeffer pürieren. Die Spaghetti nach Packungsanweisung in Salzwasser garen. Öl in einer Pfanne auf mittlerer Stufe erhitzen, Spargelstücke und Zucchinischeiben ca. 5 Minuten darin braten und mit Salz und Pfeffer würzen. Nudeln abgießen, auf einen Teller geben und gebratenes Gemüse und Avocadopesto darüber geben. Ergibt 2-3 Portionen. Nährwerte auf 100g: Kcal 91; EW 1g; F 2g; KH 15g ; Phe 50mg; Leu 80mg; Tyr 33mg; Met 18mg Das schmeckt so frisch und lecker - probiert es einfach mal aus - das ist kein Aprilscherz heute 🙃😉 Nun haben wir nur noch zwei Wochen, bis das LLW Camp auf Usedom startet und wir freuen uns alle schon sehr darauf. Bis dahin habe ich noch einige Frühlingsrezepte für Euch und damit geht es nächste Woche weiter 🙂 Eure Andrea 🥰 #pku #pkulifestyle #pkuinthistogether #lowprotein #veganrecipes #vegetarisch #leckerschmecker🍴 #spargelzeit #spargelrezepten #lowinphehighintaste #lowproteinfood #vitafriendsde #vitaflo # #phénylcétonurie #phenyloketonuria #pkunaund #pkulife

4/1/2024, 10:59:13 AM

Older PKUers be like….. #pkudiet #phenylketonuria #lowprotein #pkustrong #eiwei #pkufood #phenylketonurie #pkulife #pkurecipes #pkuproud #metabolicdisorder #pkunaund #pkuinfo #livingwithpku #phenylalanine #vitafriendspku #pkulifestyle #armedi #lowproteinfood #lowproteindiet #lowpro #eiweissarm #lifestyle #pkuhits #phenylcetonurie #vitaflo

3/31/2024, 3:41:58 AM

🐣 Low Protein Easter Wreaths 🐣 Happy Easter from us to you 🌷🌷🌷 #pku #pkukids #metabolicdiet #pkuinfo #pkufood #pkulifestyle #pkurecipes #pkuawareness #pkucommunity #lowproteinliving #lowproteindietforlife #lowproteindiet #lowproteinfood #lowproteincooking #lowprotein #lowproteinlifestyle #phenylketonuria #phe #easter #eastertreats #easterbasket #happyeaster#🐣

3/30/2024, 2:20:09 PM

⚠️ RECIPE DEVELOPMENT PROJECT ⚠️ Incoming of recipes for you …. 👨🏽‍🍳 MUSHROOM TAGLIATELLE 🍝 HOMEMADE LOW PROTEIN YORKSHIRE PUDDINGS 🥧 SWEET POTATO AND DILL FISHCAKES 🥟 Made using @promin_metabolics products such as … all purpose baking mix, flat noodles and susbstitut de poisson‼️ PLUS many more ingredients you can learn with 😋 #metax_dietetics #livingwithpku #pkuideas #lowproteindiet #pku #pkuinfo #pkurecipes #metabolicdisorder #lowprotein #specialdiet #modifieddiet #phenylketonuria #lowproteinvegetables #lowproteincooking #lowproteinfood #lowproteinfoods #lowproteinideas #30minutemeals

3/27/2024, 4:14:25 PM

#fajitasfüralle #oldelpasoglutenfree #metax #loprofin #metzgersbeste #bufis #eiweissarm #eiweissarmeküche #eiweissarmediät #eiweissarmesessen #lowprotein #lowproteinfood #lowproteindiet #lowproteincooking #lowproteinkitchen #lowproteinliving #lowproteinlife #lowproteinlifestyle #phenylalanine #pku #swisspku #pkuschweiz #mommyofagirlwithpku🦄 Yeahhhhh💪Fajitas für alle, Elena hats auch geschmeckt🫶🏻Bin soooo dankbar, dass sie nun nicht mehr so heikel ist❤️ Allenfalls haben sich meine Kochkünste auch verbessert😂🙊

3/25/2024, 7:02:59 PM

Sabías que podes hacer estas tabletas heladas con forma de huevos de pascuas? Te animas a prepararlas?🍦 ❤️ 🐣 Para 4 unidades: - 6 cdas de Freegur. - 50 ml de agua. - 50 ml de crema. - Chocolate Schoxxi. Elaboración: - En un bowl colocar el Freegur, el agua y la crema. - Mezclar. - Colocar en una budinera dándole 1, 5 cm de espesor aproximado. (Cubrimos solo una parte de la budinera) - Freezar durante 2 horas. Desmoldar y cortar en 4 tabletas iguales. - Derretir el chocolate a Baño Maria. - Bañar las tabletas de Freegur con el chocolate derretido. - Llevar al freezer. - Y a disfrutar!!! 😃 . . Receta by @cocina_muy_baja_en_proteinas #comerricohacebien #phenilketonuria #pku #fenilcetonuria #fenilalanina #lowproteindiet #lowproteinfood #lowprotein #verylowprot #bajaproteina #cocinamuybajaenproteinas #muybajaenproteinas #dietahipoproteica #cocinasaludable #anana #frutosrojos #veggie #vegetariano #cocinafacil #cocinasana #vegetariana #ricoysano #recetascaseras #recepies #cooking #homemade #dulce #freegur #frutilla

3/25/2024, 3:32:20 PM

#hamburger #abendessen #metax #pkuhuberviolife #bufis #eiweissarm #eiweissarmediät #eiweissarmeküche #lowprotein #lowproteindiet #lowproteinfood #lowproteinkitchen #lowproteincooking #lowproteinliving #lowproteinlife #lowproteinlifestyle #phenylalanine #pku #swisspku #pkuschweiz #mommyofagirlwithpku🦄 Für uns nicht PKUler gabs heute Hmburger und Pommes. Natürlich habe ich für Elena was ähnliches versucht. Das Brot ist von PKU Huber, der Käse von Violife und mein selber gebastelter Burger von Metax. Die Sauce sind von Bufis „die sind sooo fein🫶🏻😍“. Elena fands auch super🥰🙏 Der Burger ( Brot, Fleischersatz@und Käse) haben ca. 46mg Phe.

3/24/2024, 6:36:16 PM