soheb, (edited ) to Youtube
@soheb@pkutalk.com avatar

In PKU news, a good friend of mine Paul has updated his PKU Insights YouTube channel to discuss some of the new things in the future.

You can check it out here (and subscribe to the YouTuvbe channel!)

https://www.youtube.com/watch?v=iMPr16eAuGo

soheb,
@soheb@pkutalk.com avatar

Also in more PKU news (it's all kicking off in the PKU community!!) @pcublogue has released a new blog post for Low Protein Nachos...

NACHOS!

Give it a read/watch, and for goodness sakes, please do subscribe via RSS/email to @pcublogue's newsletter!!

https://phenylcetonurie.ca/2024/05/01/product-low-protein-nachos/

poconnor, to random
@poconnor@pkutalk.com avatar
soheb, to languagelearning
@soheb@pkutalk.com avatar

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

soheb, to random
@soheb@pkutalk.com avatar

To all my PKU folks in the UK - the NSPKU has a great section on foods that are suitable for PKU folks as well as the relevant exchanges.

Please check those docs here: https://nspku.org/documents/?wpdmc=dietary-info

poconnor, to baking
@poconnor@pkutalk.com avatar

PKU-Friendly Chocolate, cherry & sour cream cupcakes incoming…

pcublogue, to random
@pcublogue@pkutalk.com avatar

Dinner this evening: Vegetables overload and sweet potatoes 🍠

#phenylcetonurie #pku #pkustrong #pkuawareness #phenylketonuria #lowprotein

pcublogue, to random French
@pcublogue@pkutalk.com avatar
pcublogue, to random French
@pcublogue@pkutalk.com avatar

Est-ce que la volonté est comme un muscle qu’on peut entraîner? J’ai besoin d’y croire! 😝

Il n’y a rien qui travaille ma volonté comme faire le petit déjeuner de ma fille EN PLUS d’être en train de jeûner. 💪🏻😅

pcublogue, to random
@pcublogue@pkutalk.com avatar

, jour 1 (repas 2 de 2).

📌 Riz fri aux légumes (konjac)
📌 Salade verte avec huile d’olive, curcuma et câpres

1g de protéines (méthode simplifiée) 🙌🏼
8g de glucides net 😄

pcublogue, to random
@pcublogue@pkutalk.com avatar

jour 1, mon déjeuner (repas 1 de 2).

📌 Sandwich BLT (le « bacon » est de la noix de coco fumée)
📌 Frites de céleri rave
📌 Ketchup sans sucre céto

Moins de 4g de protéines (méthode simplifiée)
11g de glucides net
Excellent 😋

soheb, to random
@soheb@pkutalk.com avatar

Didn’t do them last week as I had a cold, so didn’t see the point of being scolded for high phe levels which I had no control over.

soheb, to random
@soheb@pkutalk.com avatar

I really loved watching this presentation given by our very own @pcublogue! It's about his experiences with PKU. Goes to show no matter the language/nationality/culture difference, there are some things we all share the same, and @pcublogue put it brilliantly! Well worth a watch:

https://videos.pkutalk.com/w/343pZ7gFhvhrN39QGAbQmH?subtitle=en

#Phenylketonuria #phenylcetonurie #Phenylalanine #PKU #ClassicPKU #LivingWithPKU #LowProtein #LowProteinDiet

soheb, to random
@soheb@pkutalk.com avatar

Made myself some stir fry noodles the other day!

It was actually quite nice!

#PKU #ClassicalPKU #LivingWithPKU #Phenylketonuria #Phenylalanine #phenylcetonurie #LowProtein #LowProteinDiet

soheb, to food
@soheb@pkutalk.com avatar
soheb, to food
@soheb@pkutalk.com avatar

Made myself some low protein burgers using the Promin burger/bun mixture. They both tasted great! I think it would be better with a leaf of lettuce, some tomatoes, and some vegan cheese though...

#PKU #Phenylketonuria #Phenylalanine #LowProtein #LowProteinDiet #Food #Burgers

soheb, to random
@soheb@pkutalk.com avatar

My last blood test results came back at 570 umol/L!

The one before was 801 umol/L, so it’s nice to see such a drastic difference. It came down to a spice I regularly used having quite a significant amount of protein! Once that got cut out, my levels went down.

poconnor, to random
@poconnor@pkutalk.com avatar

What is Large Neutral Amino Acid (LNAA) treatment?

#LNAA is an additional treatment for #PKU which is used in certain European nations.

In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog:
https://buff.ly/408pMWC

#LivingWithPKU #NSPKU2023 #ESPKU2023 #LowProtein

poconnor, to random
@poconnor@pkutalk.com avatar

Needed a cake at the weekend, so grabbed a tried & trusted @LowProConnect Victoria Sponge cake recipe - https://www.nutricia.co.uk/patients-carers/recipes/victoria-sponge.html
I added cocoa, and swapped out the cream & jam for Chocolate fudge icing.

Delicious!

#PKU #LivingWithPKU #PKUBaking #LowProtein #Phe #LowPhe

soheb, to random
@soheb@pkutalk.com avatar

So… just tried the Promin chicken burger from the ESPKU conference and... it's a little grainy??

Did anyone experience this or is it just me??

soheb, to random
@soheb@pkutalk.com avatar

Has anyone tried the GMPro powder/drink in comparison to the PKU Sphere? What did you think of it?

soheb, to random
@soheb@pkutalk.com avatar

Our very own @poconnor has written a new update to her newsletter!

All about the ESPKU including the best panel ever held*, and some details about brain injury. Not only that, but it closes on a final thought which-my word, I really needed that about now, so thank you Pauline!

You can read it here (and maybe subscribe, would you?)

  • according to me

https://mailchi.mp/b559d165908d/pigpen-newsletter-pku-brain-injury-and-mental-health-9135032?e=c53e4b7d0f

soheb, to food
@soheb@pkutalk.com avatar

So I found these two low protein items from Tesco that seem suitable for PKU folks! Here is my little review:

The spring rolls: was ok. I think I prefer normal vegetable spring rolls. It’s 1 exchange for each spring roll too 😒

The tempuras: Oh. My. God. These are sooooo delicious!! And at 0.5g of protein too per tempura (half an exchange for PKU UK folks).

Cook from frozen 15-17 mins New TESCO Plant Chef 10 NO-PRAWN TEMPURAS 100% PLANT BASED Jackfruit & King Oyster Mushrooms in a seasoned gluten free batter

poconnor, to random
@poconnor@pkutalk.com avatar

What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU [https://pkutalk.com/tags/PKU] which is
used in certain European nations. In my book, "Living with PKU," I discussed
LNAA and you'll find an excerpt on my blog:
https://pigpen.page/what-is-lnaa/ [https://pigpen.page/what-is-lnaa/]

#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #NSPKU2023
[https://pkutalk.com/tags/NSPKU2023] #ESPKU2023
[https://pkutalk.com/tags/ESPKU2023] #LowProtein
[https://pkutalk.com/tags/LowProtein]

poconnor, to random
@poconnor@pkutalk.com avatar

What is Large Neutral Amino Acid (LNAA) treatment?
this is an additional treatment for #PKU which is used in certain European nations. In my book, "Living with PKU," I discussed LNAA and you'll find an excerpt on my blog:
https://pigpen.page/what-is-lnaa/

#LivingWithPKU #NSPKU2023 #ESPKU2023 #LowProtein

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