Understanding the Galactosemia Diet with Dr. Sandy Van Calcar

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The Galactosemia Podcast

Ryan and Jill

23 episodes

1 week ago

The Galactosemia Podcast is a resource for understanding and navigating life with galactosemia. Whether you’re a new parent grappling with a recent diagnosis or a member of the community seeking updates, this podcast has you covered. Each episode dives deep into the science, treatments, and real-life experiences of families and experts dealing with this rare genetic condition. Join us as we interview doctors, researchers, and families to share insights, practical advice, and hope for the future.

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Understanding the Galactosemia Diet with Dr. Sandy Van Calcar

The Galactosemia Podcast

1 hour 20 minutes 22 seconds

7 months ago

Understanding the Galactosemia Diet with Dr. Sandy Van Calcar

In this episode of The Galactosemia Podcast, Ryan sits down with Dr. Sandy Van Calcar—registered dietitian, researcher, and one of the leading experts on dietary management of classic galactosemia. From growing up on a dairy farm to leading research that shaped today’s international guidelines, Dr. Van Calcar brings decades of experience and clarity to a topic that can be overwhelming for new families.

Together, they dive deep into the science and practical realities of managing the galactosemia diet, breaking down essential concepts like endogenous galactose production, free vs. bound galactose in food, and why some aged cheeses may actually be safe to eat.

She also shares the story of how her team tested dozens of foods—including cheeses and legumes—to inform the current recommendations. Plus, they discuss bone health, label reading, and why parents shouldn’t panic if a mistake happens.

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Resources mentioned:

International Galactosemia Guidelines: https://pmc.ncbi.nlm.nih.gov/articles/PMC5306419/
Guideline Supplementary Content: https://pmc.ncbi.nlm.nih.gov/articles/instance/5306419/bin/10545_2016_9990_MOESM1_ESM.pdf
Dr. Van Calcar’s presentation PDF: https://docs.google.com/presentation/d/1z8tuyvAENH-jAKtp8WL0RkTv3QquiZYM/edit?usp=sharing&ouid=115342045423373001199&rtpof=true&sd=true
Published Papers from the Cheese and Food Testing Research:

https://drive.google.com/file/d/1iIlhQ1n23lL26HXTFpcfmQO1fomPcVoc/view?usp=sharing
https://drive.google.com/file/d/1u6kwjcjZaM-wLRD8nt7lHThnjrClW7ui/view?usp=drive_link

Guest Bio:

Dr. Sandy Van Calcar is a registered dietitian and researcher specializing in inborn errors of metabolism, with a particular focus on classic galactosemia. She holds a PhD in Nutritional Sciences and currently works at Oregon Health & Science University in the Department of Molecular and Medical Genetics.

Dr. Van Calcar has been instrumental in shaping modern dietary guidelines for galactosemia. She’s known for her groundbreaking work analyzing galactose content in foods, including leading a task force that tested aged cheeses and other products for their safety. She’s also a key contributor to the International Galactosemia Guidelines and a founding member and past president of Genetic Metabolic Dietitians International.

Her unique background—from growing up on a dairy farm to becoming a national voice in metabolic nutrition—makes her one of the most trusted experts in this space.