Tag Archives: Phenylketonuria

Garlic Roasted Eggplant Spaghetti Sauce

During this long, President’s Day weekend, I was looking for ways to shake-up the spaghetti and marinara I seemed to be eating all the time. I wanted to try something new and eggplant is something I did not have a lot of experience cooking. If you have never cooked with eggplant, try not to get freaked out by the brown seeds. Those are normal. And it is important to extract as much liquid from the eggplant when you press it between the paper towels. This will provide you with the best roasted flavor and texture as possible.

Garlic Roasted Eggplant Spaghetti Sauce, Low-protein, PKU Recipes, PKU Cooking, Phenylketonuria

Low-protein Garlic Roasted Eggplant Spaghetti Sauce

Ingredients:

  • 1 med-large eggplant, unpeeled and cut into large chunks
  • 1 tablespoon kosher salt
  • 2 tablespoons olive oil
  • ½ teaspoon garlic powder
  • 1 cup Classico Traditional Sweet Basil pasta sauce

Directions:

  • Preheat oven to 500 degrees.
  • Place eggplant in colander, sprinkle evenly with salt and let stand for approximately 2 hours.
  • Rinse salt from eggplant and press firmly between triple-layered paper towels.
  • Toss eggplant and olive oil together in a large mixing bowl.
  • Sprinkle garlic powder on top of eggplant/olive oil mixture, making sure to coat evenly.
  • Spread in single layer on large baking sheet.
  • Roast for approximately 30 minutes or until tender and brown. Stir every 10 minutes.
  • Allow eggplant to cool when done.
  • Separate into two, ½ cup servings (It is important to measure the eggplant after it is cooked because the size and weight of eggplant changes dramatically after it has been cooked).
  • Set one serving aside for sauce.
  • Store the second serving in the refrigerator until ready to eat at a later time.
  • Toss remaining ½ cup of roasted eggplant and 1 cup of pasta sauce into a sauce pan on medium-high heat.
  • Once sauce mixture is warm, serve on top of low-protein Aproten Spaghetti noodles.

Yield: 1 serving, plus an additional serving of roasted eggplant for later
Phe: 129 mg (sauce & eggplant only; add additional phe for low-protein pasta)

My oven seemed to run a little hot for 500 degrees and I did not really need to roast my eggplant for a full 30 minutes. In fact, I would venture to say that mine turned out slightly over cooked; however, I will get better with practice. Just watch the eggplant closely as you roast it on the baking sheet and if you feel that it is getting heavily browned, then remove it from the oven. Whenever you prepare to eat the left-over portion of the roasted eggplant, simply repeat the last two steps in the directions listed above. Depending on your preference, you may also want to top the dish with Daiya Mozzarella Shreds and serve with low-protein garlic bread.

–NM

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Tervis Tumbler + Olive Garden = Awesome PKU Dining Experience!

Earlier this week, I ventured out for my first restaurant meal since returning to the PKU low-protein diet. I was meeting my mother for lunch and we selected Olive Garden because we knew the unlimited salad (minus croutons and cheese) would be very PKU friendly. I also had the idea to bring some of my Aproten low-protein noodles with me. I had a batch already cooked and sitting in a Tupperware container in my refrigerator so all I had to do was re-heat them and find a way to transport the noodles while still keeping them warm. I immediately thought about a casserole dish/thermal carrying tote combo that I have, but I didn’t like the idea of walking through the restaurant carrying a large dish.

Tervis Tumbler, Low-Protein Noodles, Eating out on a PKU Diet

An insulated Tervis tumbler is a great way to transport low-protein noodles when eating out on a PKU diet.

What did I do next? Well, this may sound a little silly, but I transferred my noodles into a Tervis tumbler. If you aren’t familiar with the brand, Tervis tumblers have a double-walled design that allows the air in between to keep hot drinks hot and cold drinks cold. Knowing about the tumbler’s insulated properties, I thought it might also be feasible that the tumbler would keep my noodles warm. Even better was that after sealing the tumbler with its tight-fitting travel lid, I was able to discretely carry the noodles in my purse (For the record, I do carry a very large purse!).

When I ordered my meal, my mother and I explained to the waitress that I had special, dietary needs and asked if it would be possible to order just sauce and an extra plate. Specifically, I wanted to order the sauce that came with the Penne Rigate Pomodoro, a mixture of roma tomatoes, garlic, fresh basil, extra-virgin olive oil and marinara sauce. Rather than charging me full-price for the dish, the Olive Garden staff was kind enough to provide me the Pomodoro sauce at the cost of two dipping sauce orders. When our entrees arrived, the waitress brought an extra plate and two dipping saucers full of Pomodoro sauce. I grabbed the Tervis tumbler from my purse, dumped the noodles on the empty plate and covered the noodles with the sauce. Over all, I had a completely awesome experience and I give the staff at the Knoxville/Turkey Creek Olive Garden mad props for helping to make my dining experience as pleasant as it was!

Finally, in closing here’s an update on how my return to diet is going: Yesterday marked three weeks since returning to the low-protein diet. My first on-diet blood level, taken on Jan. 27, came back at 4.3 mg/dl. That’s right in the ‘sweet spot’ of my clinic’s desired treatment range between 2 and 6 mg/dl. I was definitely impressed at how quickly my phe levels dropped, especially considering the last level I had prior to returning to diet was 20 mg/dl. I’ll be taking another level later today since my goal is to send a level to my clinic every two weeks.

–NM

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Portabella Stuffed Peppers

One of my favorite dishes that my mother would make when I was off-diet was stuffed peppers. Her original recipe called for mixing a pound of ground beef with a cup of minute rice, diced onion, salt, pepper and garlic powder in a large bowl. Once the mixture was combined, she’d cut the tops off of four green bell peppers, hallow-out the seeds and then fill each pepper to the top with the mixture.

Earlier today, I decided to try my hand at adapting this family recipe for a low-protein PKU diet and I was extremely pleased with how well this dish turned out! I substituted portabella mushrooms for the ground beef and instead of minute rice, I used Cambrooke Foods’s low-protein short grain rice. Here’s a closer look at the recipe and how I prepared it.

Ingredients:Low-Protein, Portabella Stuffed Peppers, PKU Recipes, Low-Protein Recipes

  • 5 medium-sized green bell peppers
  • 2 medium-sized portabella mushroom caps, diced
  • 1/2 large onion, diced
  • 1-1/3 c of Cambrooke imitation short grain rice
  • (4) 26 oz. cans of Campbell’s concentrated tomato soup
  • Garlic powder
  • Salt
  • Pepper

Directions:

  • To prepare the green bell peppers, slice the tops off and hallow-out the seeds.
  • Place the caps back on top of the peppers and set aside in a dutch oven.
  • In a large mixing bowl, combine portabella mushrooms, onion and imitation rice.
  • Once ingredients are mixed, add ½ cup of tomato soup and stir until well coated.
  • Add garlic powder, salt and pepper to taste.
  • Using a large spoon, scoop mixture into each bell pepper until filling is level with the top of the pepper.
  • Place the pepper cap on top of the now-stuffed pepper, use two toothpicks to secure the cap and place back inside the dutch oven.
  • Repeat until all five peppers have been stuffed and re-capped.
  • Pour the remaining condensed tomato soup in the dutch oven, filling in around the peppers until the peppers are at least half-way covered with the soup.
  • Place lid on dutch oven and bake at 350° for 1 hour.

Yield: 5 stuffed peppers
Phe: 161 mg per pepper*
Protein: 2.5 gm per pepper
Exchanges: 10.7 per pepper
Calories: 197 per pepper
Fat: 0.8 gm per pepper

* Based on 1.2 cup tomato soup mixed in with ingredients, not soup peppers are baked in.

Portabella Stuffed Pepper Leftovers

Invest in some plastic containers for storing extra servings in the refrigerator or freeze for later.

As you can tell, this recipe makes a ton of leftovers. I ate one pepper immediately and packaged the rest in Tupperware containers. I placed two servings in the fridge for eating later this week (maybe as a packed lunch for work) and froze the other two so they wouldn’t go bad. If you feel like you need a little more sustenance, serve the pepper along with Aproten low-protein noodles and use the extra tomato soup as gravy. Just be sure to add 68 mg of phe per ½ cup of tomato soup you top it with.

Enjoy!

–NM

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Planning a PKU Menu

I’ve said this before on PKU Parlor, but the ability to plan and organize is going to be instrumental for me adhering to the low-protein diet. And if you know me, then you know I have affinity for being obsessed with organization.

Allow me to introduce my new chalkboard wall…or as mother referred to it, my command center. 🙂

Menu-Board

After 10 coats of magnetic primer and two quarts of chalkboard paint, I have successfully turned one wall of my laundry room into a customizable reminder/menu board.

You may recall that in my last post, I briefly mentioned that I intended to plan-out my menu a week at a time. As you can see here, after I completed my grocery shopping, I jotted down the menu items on this chalkboard wall as a way to remind myself of any items left for eating as I get further into the workweek. At the end of the week, I erase the items and start all over again. The left-hand side of the board has a special section reserved for reminders, both PKU-related and non-PKU related.

Now it’s worth noting that planning a low-protein menu a week at a time can be challenging. Among other items, it demands a ton of fresh produce and an arsenal of spices for livening up what otherwise might be considered bland, low-protein foods. Since I don’t want to lose track of all the hard work put towards menu planning, I also plan on creating an electronic database of meal plans. I haven’t created the database yet, but when I do, I’ll likely create it using Microsoft Excel and include columns noting phe amounts and whether the recipe calls for low-protein products. The last of these discriminators will prove valuable for those moments when I find myself running low on low-protein foods and need to get through the coming week eating whatever is available in local grocery stores.

As I conclude this post, allow me to reflect on what today marks one week since first cutting out all high-protein food items in my diet. I agree that I feel better. That’s hard for me to admit since I prided myself for so long as someone who could eat whatever and still function at a high level. One of the harder things for me to do mentally is to stop counting calories and start to worry more about protein. I realize that eating low-protein won’t always align with low-calorie so I’m having a bit of a struggle letting go of that.

Until next time!

–NM

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Returning to the PKU Diet—Easy Does It!

Going from a completely liberated diet to one that consists of limited protein intake can be rather intimidating when you look at it from a 25,000-foot view. However, breaking-up the task in small chunks and tackling the goal with baby steps can make all the difference between success and failure.

That’s the approach I’m taking after recently deciding to give the low-protein diet a try. I first started this effort last week by committing to taking my formula four times a day. I didn’t worry about altering my diet any; just made sure that I had 60 grams of protein via formula and see how that goes.

Use the RxmindMe app to set reminders on your phone to take your formula.

Use the RxmindMe app to set reminders on your phone to take your formula.

For me, getting all the formula in was not a problem. I would take one with breakfast, the second at 10 a.m., a third near the end of the workday before heading to the gym, and the final before heading to bed. I even set reminders on my phone using RxmindMe and on my Outlook Calendar just in case I got caught-up with work and forgot to take a break for drinking my formula.

After about the third day of doing this, I started to get really strong headaches, especially right after waking up in the morning. At first, I attributed them to stress at work, but when they persisted even on into the weekend, I figured there might be something else at play. Eventually, I concluded that by not altering my diet, but still consuming 60 grams of protein through formula, I was in essence consuming twice as much protein as a non-PKU person would normally eat.

First time making Cook for Love's low-protein bread! The 2nd loaf (on the right) definitely came out better.

First time making Cook for Love’s low-protein bread! The 2nd loaf (on the right) definitely came out better.

The next step in my goal of returning to the low-protein diet was to cut-out all meat. Given the persistent headaches though, I decided to ramp-up my progress. I decided to try my hand at making Cook for Love’s sandwich bread—in fact, I made two loaves and have frozen the second for eating later. I also started incorporating a few low-protein modified foods such as Aproten pasta and Cambrooke’s rice. That being said, I went from eating 60-90 grams of protein to just 15 grams as of yesterday. And the best part? No headaches when I woke this morning!

I realize the real trick will be to continue this progress in the long term, but again, to keep from getting overwhelmed, you have to take it one day at a time. Today, I am going to work on building out my menu for the entire week. I’ll pick out some new recipes, search some free foods through Virginia Schuett’s Low Protein Food List and go from there. As I try new things or find tips to share, I’ll regularly post those here. Of course, if you have any to share, please feel free to do so in the comments section below.

–NM

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PKU Letter Campaign to HHS Makes an Impact!

There’s some good news to report in the PKU community: the Health and Human Services letter writing campaign–initiated by the National PKU Alliance aimed at ensuring that every state’s essential health benefits plan provides coverage for medical foods–has made a difference. This article, originally published in Congressional Quarterly’s Healthbeat News on Dec. 21, 2012, provides more details about how those comments have been received.

 Patients Bombard HHS With Pleas on Essential Benefits Packages
By Jane Norman, CQ HealthBeat Associate Editor

Congressional Quarterly HealthBeatParents of children with rare diseases, advocates of acupuncture and other individuals are beginning to flood the Department of Health and Human Services with pleas and complaints about which specific services should be included in states’ essential health benefits packages.

Public comments on a proposed rule on essential health benefits aren’t due until Dec. 26, but more than 1,000 responses already have been received, according to the government website where the reactions are posted. Nearly all the comments so far are from individuals rather than organized groups or health business interests, though those groups also are starting to weigh in.

The letters from worried patients, doctors and family members across the country are an indication of the intense interest not just within the health industry but also among members of the general public – many with diseases or chronic conditions – in the outcome of decisions on benefit packages, which will vary from state to state and have a major impact on some people’s lives.

More than 11,000 comments had been filed in response to a bulletin issued on benefits before the rule was unveiled a month ago.

Some writing in are also asking for more time for comments to be gathered, saying that 30 days stretching over the holiday season isn’t enough time for people to digest a 119-page proposed rule and offer input on what should be changed. “Thirty days during the holiday is poor timing,” said an anonymous comment that suggested 90 days instead.

On Nov. 20, the Centers for Medicare and Medicaid Services released its proposed rule (See related story CQ HealthBeat, Nov. 20, 2012) establishing the essential health benefits required under the health care law (PL 111-148, PL 111-152). Non-grandfathered health plans offered inside and outside exchanges must, under the law, include benefits in 10 broad categories of services. State officials are supposed to pick a benchmark plan in their state as a model. HHS included some additional specific details on benefits in its proposed rule, but many commenters want more.

Don Hossler, who didn’t list an address, said in a comment that the federal government should have required that states get public input before naming their benchmark plans, including from groups that advocate for people with disabilities. “I realize there is a short time for a state to conduct meaningful public comment,” he said. “However, grass-roots organizations need to be allowed ‘at the table’ to enhance the decision based on consumer input.”

Dozens of people have written in already asking that coverage of medical foods be included for patients with PKU, a rare, inherited metabolic disorder in which the body can’t process the amino acid phenylalanine. Treatment must be started early in order to avoid damage to the body and involves a special diet, according to the National PKU Alliance.

Aleksandra Pisarek wrote that she is the mother of an 8-year-old boy with PKU who will require lifelong treatment to avoid brain damage. “Failing to ensure coverage for medical foods discriminates against people with PKU based on their disability,” she wrote.

The National PKU Alliance has urged members to write HHS, noting that the decision on medical foods may be left up to each state unless the government requires coverage of medical foods as part of the essential benefits category that covers chronic disease management. “Representatives from the NPKUA recently met with HHS on this issue, and HHS urged us to have as many people as possible submit comments on the new regulations,” the alliance’s website states.

Another group whose members sent many letters to HHS are those who receive or administer acupuncture treatment. Patricia Solomon, a Massachusetts pediatrician, said that “some of my most aware and careful parents seek acupuncture” and other alternative health treatments for their children. She said she was dismayed to see no alternative treatments included in the standards outlined for benefits. “Their value as adjuncts to traditional medicine is becoming clearer,” Solomon said.

Tabitha Silver of New York wrote, “Acupuncture has changed my life. It was the only thing that helped me with depression and pain.”

Stephen Scholle, the clinical director of a nonprofit that serves mental health consumers in Westchester and Rockland counties in New York, said his group provides acupuncture and should be included in essential health benefits, perhaps as part of wellness and preventive care. It helps with stress relief, pain relief and mental well-being, Scholle wrote.

Another commenter, Terri Bukacheski, said she is concerned that rehabilitative services and devices that are required to be provided in one essential benefits category are not well-defined. “Patients that require prosthetic limbs and orthopedic braces require these custom services for a lifetime, and the care must be provided by highly skilled experts,” she wrote. Devices should be clearly defined to include prosthetic and orthotic services, she added.

The time period for submitting comments in response to the “Patient Protection and Affordable Care Act: Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation” rule has passed; however, visit the National PKU Alliance website for more information on how to support future advocacy efforts.

–NM

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Billing PKU Formula According To Calories

Here’s something you may not know when it comes to the business of distributing and paying for PKU formula.

After trying the free sample of RESTORE LITE provided to me by Cambrooke Foods, I immediately connected with my clinic to have it added to my formula prescription. Apria Healthcare, which is the medical supply company that processes and ships my formula, called and told me, “We do not carry RESTORE LITE. We carry the regular RESTORE, but not the LITE.” After reporting this news back to my clinic, we decided to try Edgepark, a competitor of Apria Healthcare. What was Edgepark’s response? Not only does Edgepark not carry RESTORE LITE, they cannot carry the LITE because Apria, EdgePark and other “durable medical equipment” companies are reimbursed according to the number of calories in the formula.

PKU formula, Phenylketonuria formula, low-protein diet

The revelation that durable medical equipment companies are reimbursed according to the number of calories in PKU formula provides a whole new meaning to the phrase, “Spend your calories wisely!”

Call me crazy, but billing insurance carriers based on caloric value seems ridiculous, so while my dietician continues to search for an alternative medical supply company from which I can order my preferred formula, I decided to investigate this a little further.

A basic keyword Internet search turned up a 56-page document created by Abbott Nutrition and titled “Medicare Part B Enteral Nutrition Reimbursement Manual, 9th Edition.” Abbott Nutrition, which creates powdered PKU formulas such as Phenex-1 and Phenex-2, created this manual as a way to guide health care suppliers through the process of billing the U.S. federal health insurance program called Medicare. Here’s how the process is explained on page 9 of the manual:

Enteral nutrition formula is billed in “units.” A unit is defined as 100 Calories.

  • Calculation of units: Cal per day ÷ 100 = units per day
  • e.g., 6 cans/day  x 250 Cal/can = 1500 Cal/day ÷ 100 = 15 units/day
  • 15 units per day x 30 days per month = 450 units per month

Sound all Greek to you? Well, it does to me too. It appears that billing formula based on calories is a government-mandated method, but why (if I am not on Medicare) does it apply to me? Do durable medical equipment supply companies decide to apply this method across the board since they are already required to do so for Medicare patients? And what does that mean on a personal level? Do PKU patients now have to decide whether eating healthier is worth what is likely a significant increase in cost?

This way of thinking–whether it originates with the U.S. Government or with the medical supply companies–sounds all too familiar. For years, PKU patients have struggled with medical foods coverage based in large part on the incorrect assumption that a low-protein diet is cosmetic and only for achieving weight-loss.

Despite calorie count, medical formula is medical formula. Period.

If anyone from Cambrooke and/or Abbott Nutrition are reading this blog, I’d love to hear another perspective on this formula conundrum in the comment field below. Hopefully someone can explain why the 100-calorie difference you see between regular RESTORE and RESTORE LITE ultimately determines whether a patient in need receives their medical formula.

–NM

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