GLUT1 – for you who have the diagnosis, and for parents and relatives
Written with practical focus – for you who live with GLUT1 deficiency syndrome, and for parents, family and relatives who stand with you.
Getting a diagnosis raises many questions. This page gathers practical knowledge about everyday life with GLUT1 deficiency syndrome and ketogenic treatment – written for you who have the diagnosis, parents, siblings and relatives.
What does GLUT1 deficiency syndrome mean?
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A rare genetic condition where the transport of glucose from the blood to the brain is reduced. The brain may get too little energy, which can cause neurological symptoms.
How does ketogenic treatment work?
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By giving the body very little carbohydrate and sufficient fat, the liver produces ketone bodies. These can be used by the brain as an alternative energy source instead of glucose.
Why does the food need to be calculated?
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In therapeutic ketogenic diet, it is the amounts – not just the food choices – that determine whether the diet works. Too little or too much fat, protein or carbohydrate can change ketone production.
What does ratio mean?
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The ratio expresses the relationship between grams of fat and grams of protein + carbohydrate. For example, 4:1 means 4 grams of fat for every 1 gram of protein + carbohydrate. The choice of ratio is made with healthcare professionals.
How can you make everyday life easier?
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Good tools for calculation and planning, fixed routines, recurring recipes, and good overview of meals and shopping can reduce the daily burden.
How can children get a varied diet within a strict diet?
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By varying fat sources, protein sources and allowed vegetables, and by making own recipes that maintain the ratio. A clinical dietitian can help with variation within the framework.
How to handle birthdays and holidays?
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Plan well in advance. Make ketogenic versions of cakes and festive food, and clarify with organizers what the child can eat. Having own favorites ready means the child doesn't feel left out.
How to handle school and kindergarten?
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Inform staff about the diet and why it's important. Make clear packed lunches with calculated content, and agree on routines for meals and follow-up.
How to plan food when traveling?
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Pack necessary fat sources and ready-made meals. Plan breaks for meals, and check storage options. Have extra recipes for simple travel meals.
How to involve the child in cooking and meal planning?
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Let the child help choose between allowed ingredients, weigh and mix. It gives the child ownership of the food and makes the diet something you do together – not something imposed.
Products and aids
Get to know products you may encounter with a medical ketogenic diet, and how they can be used in food.
Learn more