List of the most popular hashtags for theme #MATERNALPKU

98 mg phe for this entire bowl In my family it is not a party until the popcorn is flowing. I do not remember my grandfather without his hand in a bowl of popcorn. Now, my dad carries on the tradition and tosses it with popcorn salt in a paper bag so every kernel is perfectly salted. Now you can understand how popcorn is my vice. • Two tablespoons of unpopped kernels makes four cups of popcorn and that goes down far too easily. Those measly two tablespoons of popcorn carry a hefty 196 mg of phe • Therefore, I give you the low phe option: popped tapioca pearls with ZERO milligrams of phe. Pop in oil, the same way as popcorn over the stove. Toss in salt and serve. I mix in one tablespoon of popcorn at the same time when popping and that adds a nice flavor and hearty consistency to total 98 mg for the entire bowl. • • We enjoyed this popcorn when we were “upta camp” in Maine. My dad was so happy to create a low phe option for me (I wasn’t able to share his love for beer due to PKU but now can guilt-free with popcorn). He is seriously so sweet. • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Tyrosine is an amino acid that the body produces from phenylalanine. Those with PKU are lacking the enzyme to turn phenylalanine into tyrosine and hence have a toxic accumulation of phe in the brain. Restricting the diet and sticking to low protein foods generally eliminates this. However, daily supplementation of tyrosine is crucial and the formulas we drink are loaded with tryosine. Blood draws tell us our levels of phe in addition to tyrosine in the body. Low tyrosine can be noted in a fasting state or if formula intake is inadequate. I do notice fatigue if tyrosine is low and always feel a boost of energy when consuming formula loaded with tyrosine, vitamins and other amino acids not consumed through diet. • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Just got home after nearly a week of travel. My first meal was a big bowl of low pro Alfredo. It has a cauliflower base and is a copycat of @jendellarosa Go over to her profile and check out her delicious low pro meals and learn more about maternal PKU. She has a great blog! Given that the sauce is half cauliflower (a bit chunky because I was just so excited to eat) it’s a touch healthier than the alternative. This was the perfect meal because I needed a low pro binge prior to a finger stick tomorrow morning. We’ll see how it turns out. Although I ate mostly low there were a few drunken munchies (ritz crackers how I do love you) that may skew the level. • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

Working with elevated levels all week after a viral illness that quadrupled my levels and then delicious brussels and artichokes on Easter Sunday. By mid week all I wanted was a large, veggie loaded green salad. Fresh rolls satisfy my veggie cravings but are still super low in phe. There are 70 mg of phe for two rolls stuffed full with green leaf lettuce, cucumber slices, a scoop of low pro noodles with coconut aminos and fresh mint leaves. Add whatever veggies you want and top with sweet chili sauce for all the flavor and fresh veggie feels. • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

There are a few newbies to this page and I would like to introduce myself. My name is Julia and I have classical PKU. With the support of family and friends (and sorority sisters during a few rough years in college) I have always remained on diet. Ignorance is bliss because once I get a taste of something it’s all over (anyone else relate?!). My diet is a large part of my thoughts but it is not a large part of who I am. ✨ Most do not understand the weight pku carries and that is the way I choose to live. ✨ Make it look easy. Make them jealous of your delicious low protein and healthy food. Don’t WEAR pku like a billboard. Instead SHOW the world your strength and accomplishments in life as those are truly something to celebrate. ✨ You can choose to struggle under the weight of your cross or bear it with dignity like the lord. : @bylaurenkinton

Happy cinco de mayo everyone Today I am celebrating on a flight home from one corner of the US to the other but I did have a blast at @taco.escobarr last week on the low pro food crawl hosted by @necpadorg Tex Mex is one of my favorite foods and is so easy to modify for the low protein option. We started with fried avocado that melts in your mouth. Next to the tacos This taco bar has a variety of corn tacos to choose from and all loaded with fresh veggies. Need I say more? • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku #cincodemayo

It was a fun birthday thanks to the best hosts ever @stephraq and @justandyrossi The food was incredible throughout the entire trip and they even met us at the airport with fresh watermelon (clearly know me well) • We went on a morning bike ride from Redondo Beach to Manhattan Beach ‍♀️ There was an adorable farmer's market somewhere in between with the most mouth watering • were even 10 for $10 (that's when I realized we weren't in New England anymore). • • The meals were out of this world and I have a new favorite restaurant- @catch The first course was a veggie sushi roll with a cucumber wrap, rather than white rice. The entrée was vegan roasted cauliflower nuggets in a spicy vegan aoli For dessert and my birthday treat they brought out three different sorbets with a candle in them and an exploding chocolate cake This restaurant is the full experience and a true treat for those following a low protein or vegan diet. • • We ended the night with an improv comedy show starring Flo from Progressive and riding around bird scooters Finally we crashed for the night at the @beverlywilshire and woke up on Rodeo Drive. I still can't believe we did so much in just 24 hours❗️It will be a hard birthday to top! • • • • • • • #pkufood #pku #pkuculinary #lowprotein #lowpro #phenylalanine #phenylketonuria #precondiet #precon #maternalpku #lowphe #metabolicdisorder #geneticdisorder #lowprocooking #organicpku

She is worth every teary PKU “pre-con” day when I didn’t think her life was possible, every time I passed on social gatherings and eating out with friends because my phe levels just couldn’t handle it, every time I questioned if wanting my own baby was selfish, every blood draw, every hold-the-nose and try to chug formula without puking (and every time I chugged more formula again after puking), every battle with pharmacy and insurance companies to get what was needed to keep her healthy, every panicked phone call to the dietician and doctor, and every high-risk appointment. She’s worth it all & so much more ❤️ I’m getting an early start...PKU Awareness Month starts tomorrow (it’s gonna be May...sorry, I had to‍♀️) and awareness of maternal PKU this year means a lot to me after hearing so many young PKU women share with me that they want kids and just don’t know how it will be possible. It is. And whether you’ve prepared your body for months prior to pregnancy or you find out you’re pregnant and are getting healthy now, what a lucky kid to have a mama that loves them so much before they’re even born to do what’s needed to keep them safe. I encourage you to spread awareness this month about this (small) piece of you in whatever way you’d like...I think awareness is so important for acceptance and support! #PKUAwareness

Meeting PKU friends in person is just about my favorite thing ever. As much as I (sometimes) despise social media, I also love it for bringing together great friends in a rare community. There are very few people in my life that stubborn me will listen to when it’s time to change some unhealthy habits, and not-so-oddly enough, it’s the people that are living it, too. I always know that when Jeff and I get to chat we’ll talk about how we’re really doing, what our last phe levels were and why they were that way, and I’m telling you, you guys, there’s been more than once these last few months while I feel like I’m re-learning PKU after pregnancy that I’ve literally thought in my mind, “I know I should care, but right now I don’t, but Jeff’s gonna ask if I took a phe level, so like I guess I’ll take one.” And hey, everyone needs a friend like that that pushes you to be better!! PKU community...if you’re ever in the Austin area, message me..I’d love to meet!