#lowprotein — Public Fediverse posts

To all PKU folks - Share your story!

@poconnor has got some great PKU stories on her blog - one from yours truly 🧐 - and you can add your story into the mix as well!

Visit this link to find out more: https://www.pigpen.page/share-your-story-2/

#phenylketonuria #phenylcetonurie #pku #pcu #lowprotein

Getting ready for Valentine's Day - and Pancake Tuesday :)

An easy low protein recipe for reliable PKU pancakes: photos & video guides :)

Ideas for protein-free, and measured protein toppings.

https://www.pigpen.page/pku-pancakes/

#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes

Getting ready for Valentine's Day - and Pancake Tuesday :)

An easy low protein recipe for reliable PKU pancakes: photos & video guides :)

Ideas for protein-free, and measured protein toppings.

https://www.pigpen.page/pku-pancakes/

#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes

Getting ready for Valentine's Day - and Pancake Tuesday :)

An easy low protein recipe for reliable PKU pancakes: photos & video guides :)

Ideas for protein-free, and measured protein toppings.

https://www.pigpen.page/pku-pancakes/

#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes

Getting ready for Valentine's Day - and Pancake Tuesday :)

An easy low protein recipe for reliable PKU pancakes: photos & video guides :)

Ideas for protein-free, and measured protein toppings.

https://www.pigpen.page/pku-pancakes/

#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes

🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas

💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.

Merry Christmas 🎄

#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder

https://www.pigpen.page/pku-at-christmas/

🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas

💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.

Merry Christmas 🎄

#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder

https://www.pigpen.page/pku-at-christmas/

🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas

💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.

Merry Christmas 🎄

#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder

https://www.pigpen.page/pku-at-christmas/

🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas

💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.

Merry Christmas 🎄

#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder

https://www.pigpen.page/pku-at-christmas/

🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas

💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.

Merry Christmas 🎄

#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder

https://www.pigpen.page/pku-at-christmas/

🥗 Recipe ideas! Four quick ‘school-night’ dinners

Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.

https://www.pigpen.page/four-quick-school-night-dinners/

#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas

🥗 Recipe ideas! Four quick ‘school-night’ dinners

Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.

https://www.pigpen.page/four-quick-school-night-dinners/

#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas

🥗 Recipe ideas! Four quick ‘school-night’ dinners

Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.

https://www.pigpen.page/four-quick-school-night-dinners/

#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas

🥗 Recipe ideas! Four quick ‘school-night’ dinners

Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.

https://www.pigpen.page/four-quick-school-night-dinners/

#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas

Just tried using the Mevalia rice and it's the one for me (an old photo of the rice with veggies).

For one I have freedom in cooking the rice (I cook it in water with vegetable stock cube mixed for added flavour). Another reason is I can taste each rice grain.
Third is that it ain't sticky when cooked (unless overcooking).

This is one of the rare PKU rice that doesn't taste like pasta but manages to be even better than normal rice lol.

#phenylketonuria #pku #phenylcetonurie #pcu #lowprotein

Finally - an actual PKU post!

I got an email from Promin saying they've got this new low protein rice - rice which is pretty much "normal rice" but has gone through some process to make it only half an exchange.

As someone who loves rice, I'm going to give this a try later on!

You can buy the packet of rice online here: https://prominpku.com/product/echigo-low-protein-pre-cooked-rice/

#phenylketonuria #phenylcetonurie #pcu #pku #lowprotein #lowproteindiet

The brilliant @poconnor has shared a PKU friendly recipe - Fennel and Orange salad (with clearly detailed ingredients that have protein, so you know where to skip):

https://www.pigpen.page/fennel-and-orange-salad/

#pku #lowprotein #phenylketonuria #pcu #phenylcetonurie #food #recipes #lowproteinrecipes #diet #lowproteindiet

July news from PigPen is out now, with the latest on:

👏 #PKU news, including approval for a new treatment

👨‍⚕️ A Men's Health care strategy in the UK

🧠 Neuroplasticity in #BrainInjury recovery

🥗A #LowProtein 'no-cook' recipe to beat the heat

🏃‍♂️ An epic 372 mile run for #charity

PLUS! 📚 new #books for PKU kids, full of low-protein foods. 🍎

🆓 Free to subscribers (and subscribing is free!) 🥳

https://www.pigpen.page/july-2025/

I wish more people knew about the use of food restrictions as a medical treatment.

Many see the word 'diet' or food restrictions as a lifestyle choice, to be ignored or dismissed.

In truth, many medical conditions are treated through the use of food restrictions.

You never know what someone else is dealing with, but you can choose how you react to their requests.

What do you wish people knew more about?

#LowProtein #PKU #Phenylketonuria #RareDisease #MetabolicDisorder #LivingwithPKU

Just released my new PKU books. An ABC reader and a colouring book 👏

- Designed especially for children with Phenylketonuria
- Full of foods which are considered protein-free for PKU in the UK,
- and have been checked by PKU clinicians.

Let me know what you think, or grab your copy here:

https://www.pigpen.page/pku-kids-books/

#PKU #PCU #Phenylketonuria #RareDisease #LowProtein #LowPhe

Just emailed to PigPen Subscribers. It is free to join, and you get a free book!

https://www.pigpen.page/june-2025/

📣 News and views from the world of rare disease. This month:

➡️ exciting news on future rare disease treatments;
➡️ a look at the revision of the ESPKU Guidelines on PKU (plus, a primer on what they are!)
➡️ Recipe of the month: Low-Protein Waldorf salad

🎭 Catch up on our LinkedIn Live! And much more

#pku #Phenylketonuria #raredisease #lowprotein #BrainHealth #braininjuryawareness

Low Protein Waldorf Salad recipe for PKU

An easy, & PKU-friendly Waldorf salad for a quick, healthy lunch. 1g protein / 1 phe in the UK. I use pine nuts for the protein as you get more 'nuts' per serving.

https://www.pigpen.page/low-protein-waldorf-salad/

#PKU #PCU #PKUFood #PKURecipe #LowProtein #Phenylketonuria

📰 Monthly news, 🥗 low-protein recipes, and 🐶 dog photos all free to subscribers at PigPen.

Plus, you get a 🆓 copy of "Mental Health & PKU" when you sign up.

Join the conversation: https://www.pigpen.page/may-2025/

#PKU #Phenylketonuria #PCU #LowProtein #RareDisease #BrainInjury #Concussion #ABI #TBI #MentalHealth

When you use up all your protein allowance on buttered popcorn…

#LivingWithPKU #pku #LowProtein #RareDisease #pcu #Phenylketonuria

PKU-Friendly, low & no protein Easter Ideas from the team at Birmingham Children's Hospital!

#PKU #Phenylketonuria #LowProtein #LivingWithPKU #EasterIdeas #Easter

Spring news for subscribers:
🎉new UK patient guides,
🏹updates on the NSPKU conference and activity weekend,
🔍plus insights into brain injury rehab.

📖📚Also, my Low Phe ABC book is almost here!

➡️ Subscribe for more, get a FREE book, & join the conversation.

https://www.pigpen.page/march-2025/

#PKU #Phenylketonuria #RareDisease #LowProtein #BrainInjury #NewBook

Just saw Promin did a video making low protein Yorkshire puddings on my YouTube feed

Gotta give this a try!

https://youtu.be/go6iElX1Bpk

#pku phenylketonuria #pcu #phenylcetonurie #lowprotein #lowproteinfood

Looking for 12-17yr olds in the UK with PKU.

Take part in paid market research on the challenges of living with PKU. The online session is 90 minutes, and you will receive £100 compensation for your time.

https://buff.ly/40gbeVi

#PKU #LowProtein #Phenylketonuria

Two of the greatest things in life.

#pasta #lowprotein #lowproteindiet #thinkpad #lenovothinkpad #spaghetti #phenylketonuria #pku #phenylcetonurie #pcu

🦃🎄New blog for the festive season:

Tips and links to help with a low protein Christmas or Thanksgiving.

I’ve included PKU and low protein menu suggestions & recipes.

Plus, links to low protein shopping websites.

https://www.pigpen.page/pku-at-christmas/

#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet

🦃🎄New blog for the festive season:

Tips and links to help with a low protein Christmas or Thanksgiving.

I’ve included PKU and low protein menu suggestions & recipes.

Plus, links to low protein shopping websites.

https://www.pigpen.page/pku-at-christmas/

#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet

🦃🎄New blog for the festive season:

Tips and links to help with a low protein Christmas or Thanksgiving.

I’ve included PKU and low protein menu suggestions & recipes.

Plus, links to low protein shopping websites.

https://www.pigpen.page/pku-at-christmas/

#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet

🦃🎄New blog for the festive season:

Tips and links to help with a low protein Christmas or Thanksgiving.

I’ve included PKU and low protein menu suggestions & recipes.

Plus, links to low protein shopping websites.

https://www.pigpen.page/pku-at-christmas/

#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet

Made some stir fry rice with Mevalia rice.

It's the first time I've eaten low protein rice and it doesn't blatantly taste like pasta in a rice shape.

#pku #pcu #phenylketonuria #phenylcetonurie #lowprotein #lowproteindiet #lowproteinfood #lowproteinmeals

Getting ready for my December newsletter with low protein ideas for Christmas. Here's a sneak peek.

If you would like more:

➡️ sign up on the link in bio, and

🎁 get your free copy of Mental Health & PKU

#PKU #LowProtein #LowProteinDiet #ChristmasIdeas #LowProteinFood #LowProtein

https://buff.ly/3URTOMZ

Just some PKU fun - decided to get worcestershire sauce a few weeks ago to add a little kick to my toast and hash browns with cheese in the morning.

My recent levels are about 100umol/L higher than usual.

I checked the ingredients, and worcestershire sauce has anchovies... 🤦‍♂️

#pku #phenylketonuria #pcu #phenylcetonuria #lowprotein #lowproteindiet #lowproteinfood

My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.

https://buff.ly/3LTIJpx

#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth

My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.

https://buff.ly/3LTIJpx

#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth

My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.

https://buff.ly/3LTIJpx

#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth

My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.

https://buff.ly/3LTIJpx

#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth

My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.

https://buff.ly/3LTIJpx

#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth

Nuevo vídeo en nuestro canal de YouTube de una sabrosa receta PKU.
https://youtu.be/EL3PdRR53cw
#pku #pkuawareness #recetaspku #lowprotein

Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
*
Blueberries 🫐
Bananas 🍌
Avocado 🥑
Almond milk
Maple syrup
20g of formula protein
A good way to start the day
😋 💪🏻👌🏻

#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein #globalhealth #santéglobale

Bleuets 🫐
Bananes 🍌
Avocats 🥑
Lait d’amande
Sirop d’érable
20g de protéines de formule
Une bonne façon de commencer la journée
😋 💪🏻👌🏻
*
Blueberries 🫐
Bananas 🍌
Avocado 🥑
Almond milk
Maple syrup
20g of formula protein
A good way to start the day
😋 💪🏻👌🏻

#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein #globalhealth #santéglobale

Today a work colleague just looked on my low protein PKU pasta, and I thought he was weirded out by the low protein-ness of it all.

He pointed out it was overcooked. He is Italian, so obviously he was going to judge my pasta cooking skills 🤦‍♂️

#pku #lowprotein #pasta #italian