In July 2014, we launched HowMuchPhe.org with the goal of bringing Virginia Schuett’s Low Protein Food List for PKU online for easy, on-the-go access in a format we could continually improve and update.
Since that time, we’ve added thousands of foods to the database, updated many others, and incorporated the results from the multiple rounds of our Amino Acid Analysis program, a rigorous process using top laboratories to determine the exact phe levels in foods common in the PKU diet.
Fifteen months after our initial launch, we introduced a comprehensive set of diet-tracking tools that will help users better manage the PKU diet. New features allow users to:
- Calculate phe content not only by grams, but by measure, e.g. cups, pretzels, fluid ounces, etc.
- Keep track of your goals for phe/protein/exchanges, calories, and protein equivalents
- Track, graph, and export your intake
- Track, graph, and export records for blood phe levels, height, and weight
- Create multiple profiles for all the PKUers in your household
- Add your own foods to the database (shared with others on your account only).
- Customize your favorites lists with nicknames & meal types
If you are looking for the old baby food list that was on this site, you can find it here, but it is out of date. The most current data is on How Much Phe.
Amino Acid Analysis Program
In 2011, National PKU News began working on a program to complement our dietician driven, ingredient based food analysis with a lab based amino acid testing. We found in our initial trials that not all labs are capable of capturing accurate results for the small amounts of phenylalanine in diet appropriate foods.
We sought the help of industry experts were very fortunate to gain the support of Eurofins Laboratories Chief Scientific Officer, Lars Reimann. Mr. Reimann designed our methodology, helped gain the support from his industry contacts for our baseline sample studies (pro bono) and has assisted and advised as we put the methodology into commercial practice in 2014.
This methodology took several years to develop, but we now have a repeatable process for the testing of Phenylalanine across a host of food types. Here’s a brief overview of the testing methodology:
- National PKU News analytical testing methodology includes baseline freeze-dryed control samples that have been analyzed in triplicate across six independent laboratories
- Before shipping, we have a joint phone call with the labs (two right now) to discuss the sample prep and shipping for each item to be tested
- Next, each food sample is prepared as discussed and shipped to two independent laboratories for analysis along with the baseline control samples. Currently, all foods are tested with 100% crossover, meaning each lab tests all foods National PKU News then complies all results across labs
- Next, the scientific teams together from both labs review the individual food results across labs for consistency and recommend any further testing as necessary before we publish to howmuchphe.org.
- All of this is coordinated by National PKU News so that the timing of testing of food samples is consistent across labs since protein values are not necessarily stable over time, particularly in fresh fruits and vegetables
- All results are also reviewed by our Dietician and founder Virginia Schuett
So now that we have this capability, what are we testing?
We are leveraging the data generated by How Much Phe searches and community requests to prioritize our testing efforts. As more users adopt the new howmmuchphe diet tracking tools we’ll have even more data to help drive our testing efforts in the future. We’re also using the funding from howmuchphe subscriptions and community supporters to finance these efforts. Accurate amino acid testing is an important tool for the PKU community and other metabolic communities that also manage low protein diets — with time and support we intend to ramp up our testing program to 50-100 foods per year.