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Category Archives: Diet-for-Life (Adult Corner)

PKU is Diet-for-Life. It’s Never too late to return to the PKU diet plan. Learn more about other PKU adults and how they returned or remained on the diet diet. Also learn about new PKU formulas and recipes to help keep the diet fun and interesting.

Introducing ULTRA!

We are proud and excited to introduce a new addition to our PhenylAde® GMP line of PKU formulas.  The recent months have not been easy, and you may be asking, “Why launch a new PKU formula now?”

The reason was simple.  Our commitment to the PKU community is to provide products that can help improve daily PKU diet management.  We received feedback from the PKU community and healthcare professionals that despite the current pandemic, we should proceed with offering this new option to you, the PKU community.

Nutricia has been developing PhenylAde® GMP ULTRA for a couple of years. From PKU product idea to launch—we want to get it right for you.  Nutricia prides itself on innovations that fill a need in the PKU community and achieve the goal of helping to improve diet management.  We also want to be sure our products deliver on our promise of outstanding taste.

The outcome of this hard work and collaboration with the PKU community is PhenylAde GMP ULTRA!  We consulted with adults and teens with PKU who advised us along every step of the development process.  From product features, taste to packaging design, PhenylAde GMP ULTRA was developed for you, by you.

PhenylAde GMP ULTRA workshops to develop package design and formula taste.

We believe PhenylAde GMP ULTRA will have a positive impact on anyone who may be struggling or looking for a new, great tasting option for their PKU formula. If you are seeking something new to give you a push to stay on diet or come back to the PKU diet, we hope this helps.  We hope you enjoy the taste, convenience and look of PhenylAde GMP ULTRA!

PhenylAde® GMP ULTRA is a medical food for the dietary management of PKU and must be used under medical supervision.

Brought to you by Nutricia North America

©2020 Nutricia North America

Learn how Rene returned to the PKU diet as an adult

Being off the PKU diet leads to high phenylalanine (PHE) levels and is associated with a variety of symptoms, such as feeling tired, irritable and forgetful.  This is how Rene felt before he went back on the PKU diet as an adult.

We met up with Rene in his home in San Diego, CA to learn more about why and how he returned to the PKU diet at age 36.

“My name is Rene and my entire life, I’ve had PKU.  I was good on my diet as a kid, because my mom and aunts all helped making my food, teaching me how to cook and reminding me to take my formula.  As I got older it got harder to stay on diet and one day I just gave up.”

Rene shared that the most difficult time was in his teen years, since he was completely off diet.

“I was feeling tired most of the time. It was hard to be active and I did not do well in school. It was hard to memorize stuff. I just wasn’t myself.  I was always angry.”

So we wanted to know why Rene decided to come back to diet as an adult.

“One of the big motivations that I had was my daughter. I wanted to be a better role model and be there for her more.  I am a single dad, and when I was off-diet I didn’t really have energy to play with her, help her with homework.  When I look back, I yelled a lot, too.”

“I just decided I needed to be a better parent so I can go to work and still have energy to focus on her (my daughter).”

We know it is not easy to get back on the PKU diet after being off diet for several years, so we wanted to know how Rene did it.  What were your first steps?

“One day, I said okay, I’m just going to call my clinic and make an appointment.  Then I had my first doctor appointment to get on the diet and get my PHE levels down.  Due to my insurance I had to drive all the way to Los Angeles, but I had my daughter with me for motivation and it was a good appointment.”

“The clinic said that there were several new options in PKU formula and they taste way better then they did when I was a kid.  They gave me the PhenylAde® GMP Ready so I’m like okay, I’m going to give it a try.” “The PhenylAde GMP READY was great. I actually love it. I don’t have to scoop it or anything.  I can take it to work. I can take it anywhere. It’s really smooth, it’s really tasty. It doesn’t have an aftertaste.”

Rene also told us that he likes to cook and remembers several vegetarian recipes his aunts taught him as a child.  He shared some recipes with us as he made lunch for himself and his daughter.

“Now that my PHE levels are back in range, I feel way better. I’m more active. I’m going to the gym, working out, playing soccer, and I also play with my daughter now, which I was not doing before”. 

We were curious if Rene had any advice for other adults with PKU who may be thinking about returning to the PKU diet.

 “Find a motivation and really focus on that.  Returning to diet is not something that happens overnight, you do need to work at it and plan your meals a bit more than when you are not on diet. The impact is you have a little bit more control of your highs and lows when sticking to the diet.  I’m really glad I did it. I feel way better.”

“You should also give PhenylAde GMP READY a try, it’s awesome, not what PKU formula used to taste like. For me it was a life-changer.”

 

Watch this video to learn more about Rene and why he returned to the PKU diet. 

Interested in trying PhenylAde GMP READY?

Brought to you by Nutricia North America

PhenylAde GMP READY is a medical food for the dietary management of proven Phenylketonuria (PKU) and must be used under medical supervision. Always consult your metabolic healthcare professional prior to making any changes to your PKU diet.

©2020 Nutricia North America

Get READY for an easier way to drink PKU formula

When it comes to PKU formula, Nutricia understands that taste matters!  That is why our products are designed in partnership with the PKU community.  We do this by taste testing new products during development and gaining feedback on package design with people from the PKU community. It’s a very important part of our process.

PhenylAde® GMP READY delivers on the promise of great taste.  It has already helped people return to the PKU diet and has also changed the minds of some about trying new formulas.  If you are curious about the taste, request a sample (link below) and see for yourself.

Learn More about PhenylAde GMP READY

Brought to you by Nutricia North America

PhenylAde GMP READY is a medical food for the dietary management of proven Phenylketonuria (PKU) and must be used under medical supervision. Always consult your metabolic healthcare professional prior to making any changes to your PKU diet.

©2020 Nutricia North America

Tips for Dining Out on a Low Protein Diet

Dining out can seem tough on a low protein diet, but it’s not impossible. Here are some helpful tips for going out, including what to look out for and how to prepare for a fun time on the town.

Plan ahead as much as possible
If you can, view the menu online ahead of time. Call the restaurant to ask any questions you have. They may even allow you to bring low protein products from home so the kitchen can make a special dish.

Try to leave enough protein allowance
For yourself or your loved one on a low protein diet, try to leave enough protein allowance for your meal. Track breakfast and lunch so that you know how much is left for dinner at a restaurant.

Pro tip: ingredient card
Create a card that lists the foods you or your loved one must avoid, and give it to your server or share with the kitchen staff. Consider listing meat, fish, cheese, eggs, beans, soy products like tofu, seeds, and nuts.

Ask questions and be aware of “hidden protein”

Don’t be afraid to ask questions about what’s on the menu. In recent years, many restaurants have become used to questions about ingredients and dish preparation. You always want to know what’s in your food.

Also, be sure to avoid “hidden protein.” This is when an ingredient contains a high-protein element but often the name does not say it. An example is Caesar Salad Dressing, which often contains anchovies, although you would not know that from the dressing’s name.

FYI: The following ingredients may contain high protein foods:

*Phenylalanine is important for those with Phenylketonuria (PKU) and Tyrosinemia (TYR) to track.

If you or your loved one has PKU, we have these tips printed on our Dining Out with PKU education guide. Download your copy in English or Spanish on our Learning Center page.

© 2020 Nutricia North America

PKU & Pregnancy – 3rd Trimester

When you reach your third trimester (after 26 weeks) you are now in the final countdown. With only 3 months to go, you will notice significant changes in your body and PKU diet. For some, your permitted protein intake may increase. Continue to be in close contact with your metabolic clinic.

If you are not in your 3rd trimester and wish to learn more about the other stages of pregnancy, here are links in our series on PKU & Pregnancy:

PKU & Pregnancy – Preconception

PKU & Pregnancy – 1st Trimester

PKU & Pregnancy – 2nd Trimester

In the 3rd trimester, depending on your pre-pregnancy weight, you will have gained roughly 11-40 pounds by the end of your pregnancy.  From now until birth, your baby will grow from the size of a large butternut squash to a small watermelon. Continue to work closely with your metabolic clinic as only your clinic can provide the best guidance for you and your baby.

Now you are getting closer to the exciting day.  As your baby grows you may experience some discomfort such as reflux, heartburn or feeling full quickly when eating.

If heartburn strikes, here are some tips to help:

  • Avoid foods that may increase risk of heartburn, such as caffeine, peppermint, spearmint, soda, spicy or acidic foods
  • Avoid eating large meals; try small frequent meals spread throughout the day
  • Limit meals close to bed time
  • Sleep with you head at an elevated angle
  • Consider a ginger candy or herbal tea

If you have difficulty consuming your formula, here are some tips to help:

  • Divide your current PKU formula into small frequent portions throughout the day
  • Ask your metabolic dietitian if a lower volume PKU formula is appropriate for you
  • Drink your formula before or between meals to be sure you are consuming your full recommended amount

You are almost there – Stay on Diet!

You have been working hard on maintaining your PKU diet.  It is important to stay on diet once you baby arrives, but it may be difficult with the demands of a newborn.   Now is the time to begin discussing a plan with your metabolic clinic and family to remain in control of your phenylalanine (PHE) levels once they baby arrives.

Here are some suggestions:

  • Teach your significant other, family or friends how to prepare your formula (the way you like it) so they can help in the first few weeks.
  • Share your favorite low-PHE recipes with family and friends so they can prepare some meals for you.
  • As you begin preparing for the baby cook some low-PHE meals and freeze for easy reheating once the baby arrives.
  • Write shopping lists for friends and family so they know what fruits, vegetables and other items to pick-up for you.

REMINDER –  Keep Sending in Blood Spots!

Request a Nutricia Maternal PKU Starter Kit for more helpful tips and tools to help get you ready for this special time in life.

All products shown are medical foods are for the dietary management of Phenylketonuria (PKU) and must be used under medical supervision.  Please consult your metabolic healthcare professional prior to making any changes to your PKU diet.

©2020 – Nutricia North America

PKU & Pregnancy – 2nd Trimester

Week 13 through 26 is considered the second trimester of your pregnancy.

View PKU & Pregnancy – Preconception Blog Here

View PKU & Pregnancy – 1st Trimester Blog Here

During this time, you will continue to work closely with your clinic as only they can provide the best guidance for you and your baby

In the 2nd trimester, depending on your pre-pregnancy weight, you will now start gaining about 0.5 – 1 pound per week. During this time period your baby will grow from the size of peach to about the size of an acorn squash.

In the 2nd trimester you may notice the return of your appetite and a desire to eat more. It is still extremely important to keep your phenylalanine (PHE) levels in control, so be sure to continue to work closely with your metabolic dietitian and have a meal plan in place.

If hunger strikes go for your formula first!

You may also benefit from preparing portioned out low-PHE snacks for the week. This may help reduce temptations to grab foods which are not a part of your meal plan when you find yourself hungry and craving a snack.

Here are some pre-portioned low-PHE snack ideas:

  • Make single-serve bags of low protein pretzels, popcorn and cereal
    • Consider gluten-free items*
  • Cut up fresh fruit or fresh pressed fruit snacks
  • Sliced vegetables; such as cucumbers, peppers, zucchini, etc.
  • Portioned out bite-size veggies; such as baby carrots, cherry or grape tomatoes
  • Bake and freeze low protein bread, biscuits, muffins, cookies and more – find recipes here
  • Prepare your favorite low-PHE soup recipes in bulk and freeze in single-serve units – find recipes here

GET READY!

During this trimester you MAY have an increase in your daily PHE tolerance, which means increased food options. Your metabolic dietitian will work closely with you and monitor your blood PHE, but remember PKU formula is still your main source of PKU-friendly protein for both you and your rapidly growing baby.

**Important!** Be sure to read labels and check serving sizes when planning your snacks. PHE content of foods can vary by brand. Remember that not all foods that are gluten-free are low in protein. For more information on finding the PHE content in commons foods, check out HowMuchPHE.org.  

Request a Nutricia Maternal PKU Starter Kit for more helpful tips and tools to help get you ready for this special time in life.

All products shown are medical foods are for the dietary management of Phenylketonuria
(PKU) and must be used under medical supervision. Please consult your metabolic healthcare professional prior to making any changes to your PKU diet.

© 2019 – Nutricia North America

Happy New Year!

The start of a new year is a great time to re-commit to better diet management.

Improving your metabolic diet is different for everyone. It can range from calling your clinic for the first time in years to making simple improvements such as:

  • Eating more fresh fruits and vegetables
  • Drinking the full amount of formula
  • Finding a formula you enjoy drinking
  • Sending in blood spots more frequently
  • Trying new low protein recipes

Nutricia is proud to offer support services to help you achieve some of your dietary goals.

Our Nutricia Connect™ program is here to provide support at various stages of life’s journey.  We offer an array of low protein recipes, educational tips and resources, and a team of professionals who can assist you or your loved one to get back on-diet.

Additionally, Nutricia’s team of formula coverage specialists can review your insurance and answer any questions you may have about formula coverage.

Connect with them today by emailing Coverage@Nutricia.com or by calling 1-800-605-0410.

Improve Your Metabolic Diet Today

About Us:

Nutricia Metabolics provides a variety of formula options for inborn errors of metabolism, including Phenylketonuria (PKU), Maple Syrup Urine Disease (MSUD), Tyrosinemia (TYR), Homocystinuria (HCU), Urea Cycle Disorders (UCD), Glutaric Aciduria Type-1 (GA-1), Isovaleric Acidemia (IVA), Propionic Acidemia (PA), Methylmalonic Acidemia (MMA) and Fatty Acid Oxidation Disorders (FAODs). Learn more at www.MedicalFood.com

NOTE: All Nutricia Metabolics products are medical foods and must be used under medical supervision. Always consult your metabolic healthcare professional prior to making any changes in your metabolic diet plan.

Sports Nutrition Basics for Active Individuals with Disorders of Amino Acid Metabolism – Part 2

We talked about general topics of sports nutrition in our last blog — let’s now discuss what is important BEFORE, DURING and AFTER exercise for people with an inborn error of amino acid metabolism such as Phenylketonuria (PKU), Maple Syrup Urine Disease (MSUD) or Homocystinuria (HCU).

Before getting started, it is important to know that you should always talk to your metabolic healthcare team before changing any exercise or diet routine. The information here is not meant to take the place of professional medical advice.

HYDRATION: Drink water before, during and after physical activity to stay hydrated

When our body temperature increases through exercise, we tend to sweat more and lose electrolytes. This can lead to dehydration and negative health effects.

Don’t just trust your thirst but have a regular schedule for drinking water. Start hydrating before exercise. The intensity of your exercise will determine how much you should drink before, during and after exercise. Your dietitian will guide you.

For those with PKU and Tyrosinemia (TYR), remember to choose drinks that are aspartame‐free as this artificial sweetener contains phenylalanine (PHE).

Nutrition BEFORE exercise: It’s all about the fuel

Nutricia makes Loprofin pastas that can be turned into tasty high-carbohydrate meals!

Start well‐fueled. For most athletes that means a carbohydrate‐containing meal and some protein (from metabolic formula and food) a few hours before exercise.

Not providing enough calories for sports can be problematic for people with a disorder of amino acid metabolism. The body could start breaking down body protein, and toxic substances might increase in the body.

Low protein pasta dishes are excellent choices for high‐carbohydrate meals; low protein baked goods are also great, delicious options. Check out our recipe ideas.

Metabolic formula provides a safe, appropriate source of protein, and a certain amount of formula (as recommended by your dietitian) should be used a few hours before exercise as part of a regular meal pattern. Think about making a smoothie with formula to give you some extra calories. Certain metabolic formulas also provide carbohydrates, so check with your dietitian about which options are best for you.

If a light snack is needed shortly before starting exercise, consider low protein crackers, fruits, a low protein snack bar or So Delicious® coconut milk yogurt alternative*.

Nutrition DURING exercise: Keep it going!

Hydration is key of course, and some people might also benefit from appropriate snacks with long‐term, high intensity exercise. Fruit juices or carb gels may be good options as they provide carbohydrates and some calories for energy. Your dietitian may also recommend a sports drink depending on your needs.

Nutrition AFTER exercise: And now about recovery

After exercise or sports, it is important to refuel—and that can be done with metabolic formula and food. Formula can provide an immediate boost of protein and other nutrients. Calories are needed to keep your body from breaking down too much body protein from muscles, which could result in an increase of toxic substances and be harmful to your health. For some people, it might be best to have a snack right after exercise.

Once you are home, have a proper meal such as: low protein pasta, a low protein sandwich, veggie chili or a fruit smoothie made with metabolic formula.

When it comes to metabolic formula, Nutricia offers a variety of options to choose from to meet your protein needs! Ready‐to‐drink products such as PhenylAde® GMP Ready and Periflex® LQ (for those with PKU) or Lophlex® LQ (available for those with PKU, HCU, TYR and MSUD) are great options to carry with you to practice or a game. Put them in a lunch bag to keep them cool if you like.

PKU PhenylAde GMP Mix‐In is a super‐convenient option to add straight into a sports drink after your game. Nutricia offers a Mix‐In product for the Tyrosinemia community as well called TYR Lophlex GMP Mix‐In.

We also offer formulas that provide more calories if that is what you need. Check out our options, and talk to your dietitian about which one is best for you.

Talk to your clinic about which Nutricia formulas may be suitable for you or your loved one’s sports and fitness needs.

We hope you or your loved one can find inspiration to explore more sports and fitness opportunities! Check out our Facebook page and share what exercise, sports, and activities you and your family do.

All products shown are medical foods for the dietary management of inborn errors of metabolism and must be used under medical supervision.

Always talk your metabolic healthcare professionals before making any changes to your activity or diet routine.

*So Delicious® coconut milk yogurt alternative is an affiliated Danone brand.
© Nutricia North America 2019

Written by: Ulrike Reichert, MS, Director Medical Affairs Keto/Metabolics Nutricia North America

Sports Nutrition Basics for Active Individuals with Disorders of Amino Acid Metabolism – Part 1

Participating in sports and fitness provides many benefits for health and wellbeing—and this holds true for many people with inherited metabolic disorders.

Plenty of members of the metabolic community run races, dance, and play team sports to stay fit. James, a college sophomore with Phenylketonuria (PKU), for example, plays club soccer. (Read our interview with him on getting back to college here). And Danae’, who has Homocystinuria (HCU) and leads the HCU Network America patient group, lifts weights regularly!

We put together a couple of blogs with some basic ideas of sports nutrition for those with amino acid disorders in hopes of inspiring you or your loved one to explore sports and fitness opportunities. Read on and be sure to check out our second blog in this series for more on nutrition before, during, and after exercise.

Huddle with your team (your metabolic healthcare team, that is!)

Before getting started, it is important to know that you should always talk to your metabolic healthcare team before changing any exercise or diet routine. The information here is not meant to take the place of professional medical advice.

Talk with your metabolic healthcare team about which sports and fitness activities may be good for you or your loved one. Your dietitian will take the type, intensity and duration of exercise into account and advise you on your needs.

Play at your best with the help of proper nutrition

Being at your best at your sport not only takes practice, but it starts at home at the table. What you eat affects your physical and mental performance. Being prepared before exercise is especially important for people with an amino acid metabolism disorder.

To play or exercise at your best, keep the following nutrition rules of thumb in mind:

  • A general healthy diet helps your fitness. That means limiting processed foods, avoiding added sugar and eating a variety of fruits and veggies.
  • Protein, coming mainly from the prescribed metabolic formula for most individuals with an amino acid disorder, is important for muscle building and repair.
  • Carbohydrates from special low protein foods, metabolic formula, and regular foods low in protein provide fuel so your body has enough for your sport; avoid sugary foods when possible.
  • Healthy fat sources such as sunflower or walnut oil give you essential fats and calories.
  • And as mentioned, fresh fruits and veggies provide nutrients such as fiber, vitamins, and minerals.

Remember: Always ask your metabolic healthcare professionals for advice.

Nutricia offers several different metabolic formulas to help you get your protein, including after sports. Check out ready‐to‐drink PhenylAde® GMP Ready, Lophlex® LQ and Periflex® LQ for those with PKU. Lophlex LQ is also available for those with HCU, Tyrosinemia (TYR), and Maple Syrup Urine Disease (MSUD). These products are super easy to carry with you in your sports bag.

Convenient options such as PhenylAde GMP Mix‐In that can be easily added to a sports drink, or even Phlexy‐10® Tablets, are other popular options for those with PKU.

Click here for more information and talk to your dietitian about which formula is right for you.

PhenylAde GMP READY, Periflex LQ, and PKU Lophlex LQ are easy to carry with you in your sports bag! Nutricia also makes ready-to-drink options for HCU, TYR, and MSUD.
Nutricia makes Loprofin pastas that can be turned into tasty high-carbohydrate meals!

And how about those carbs? When it comes to getting your carbs in before and after exercise, try our low protein pasta and recipes—made in Italy!

Let’s talk more about nutrition before, during, and after exercise in our next blog, Sports Nutrition Basics, Part 2

All products shown are medical foods for the dietary management of inborn errors of metabolism and must be used under medical supervision.

Always talk to your metabolic healthcare professionals before making any changes to your activity or diet routine.

© Nutricia North America 2019

Written by: Ulrike Reichert, MS, Director Medical Affairs Keto/Metabolics Nutricia North America

PKU & Pregnancy – 1st Trimester

Congratulations on your pregnancy! These are exciting times. Don’t forget: working closely with your clinic is important before, during and after pregnancy. Your clinic can provide the best guidance for you and your baby.

Once your blood phenylalanine (PHE) levels are well-controlled and you become pregnant you enter the first of three trimesters associated with pregnancy. Each trimester will have its own challenges and rewards.

In the 1st trimester, you will gain anywhere from 1-5 pounds. Your baby will grow from the size of a tiny poppy seed to about the size of lemon. Some women report feeling nausea during their first trimester and having difficulty keeping food down; especially in the morning hours.

Despite these challenges it is extremely important to drink your formula as it provides PKU friendly protein and general nutrition, which is essential for you and your baby.

If nausea and vomiting strikes, here are some general tips to help:

  • Try eating just the foods you enjoy most
  • Cold foods are sometimes better tolerated than hot foods
  • Avoid taking any vitamin/mineral supplement on an empty stomach
  • Avoid an empty stomach with small frequent snacks every 2 hours during the day

If nausea and vomiting strikes, here are some tips if the volume of PKU formula is an issue:

  • Ask your metabolic dietitian if a lower volume PKU formula is appropriate for you
  • Divide your current PKU formula into small frequent portions throughout the day

If nausea or vomiting is triggered by formula smell, here are some tips:

  • Ask your metabolic dietitian if you can try a PKU formula with less of a smell
  • Drink your current formula through a straw from a container with a cover to avoid smelling the formula while drinking

Some women also report constipation in their 1st trimester. Here are some tips to help:

  • Focus on fruits and vegetables that are high in fiber and low in PHE
  • Be sure you are drinking enough fluid / water

Request a Nutricia Maternal PKU Starter Kit for more helpful tips and tools to get you ready for this next stage in life.

All products shown are medical foods for the dietary management of Phenylketonuria (PKU) and must be used under medical supervision. Please consult your metabolic healthcare professional prior to making any changes to your PKU diet.

© 2019 – Nutricia North America