Sugar Alcohols: Are They Compatible with the Ketogenic Diet?

If you are following or considering a ketogenic diet or modified Atkins diet (MAD) for the management of intractable epilepsy, you may have heard talk about sugar alcohols and whether they are compatible with the diet. In today’s blog post, ketogenic dietitian Stacey Bessone will tell us more about sugar alcohols and what role they play with the ketogenic diets.


Sugar alcohols are a specific type of carbohydrate called “polyols”. Sugar alcohols are naturally occurring in fruits and vegetables and often added to foods as a reduced-calorie alternative to sugar. Some common sugar alcohols you may see in food ingredient lists include:

  • Malitol
  • Sorbitol
  • Isomalt
  • Xylitol
  • Erythritol

It’s important to be aware that some sugar alcohols may cause some people to experience bloating, gas and diarrhea, even when consumed in small amounts.

Sugar Alcohols & Glycemic Index

Interestingly, most sugar alcohols are incompletely absorbed in the small intestine, so they do not raise blood sugar the same way as sucrose (table sugar). However, since they are partially absorbed, they may affect blood glucose levels to some degree.   This can be observed by looking at the glycemic indexes of sugar alcohols compared to sugar. Glycemic index is a measure of the increase in blood glucose when a food is digested and absorbed. It is based on a numeric scale from zero to 100, where the glycemic index of glucose (a type of sugar you get from foods and the form that your body uses for energy) is 100. The glycemic index of sucrose (table sugar) is around 65, whereas the glycemic indexes of the main sugar alcohols are between 0 and 45. Therefore, sugar alcohols may raise your blood glucose, although not as much as sugars like sucrose and glucose.

[i],[ii]

 

One specific type of sugar alcohol, Erythritol, is metabolized differently than other sugar alcohols. Erythritol is fully absorbed in the small intestine and excreted in the urine unchanged, so it does not affect blood glucose levels like other sugar alcohols. As you can see in the chart above, the glycemic index of erythritol is zero.

Calories in Sugar Alcohols

Sugar alcohols provide fewer calories per gram compared to regular carbohydrates. Sugar alcohols are therefore often used as a reduced-calorie alternative to sugar.

Sugar Alcohols, Erythritol, and the Ketogenic Diet

So, are sugar alcohols allowed on the ketogenic diet and modified Atkins diet (MAD)?  Technically, most sugar alcohols should be counted as regular carbohydrates and kept to a minimum on the ketogenic and modified Atkins diets (MAD). Although they may affect blood glucose differently in different people, most sugar alcohols have the potential of raising blood sugar. The exception to this rule is erythritol, since it is metabolized differently and does not affect blood glucose.  I generally tell my ketogenic diet and modified Atkins diet (MAD) patients that when reading a food label for carbohydrate content, erythritol is the only sugar alcohol that can be deducted from total carbohydrate content. I also tell my patients that sugar alcohol can only be deducted from the total carbohydrate amount if erythritol is the only sugar alcohol used in a product. When other sugar alcohols are used in addition to erythritol, the sugar alcohol content cannot be deducted, so I tell my patients to read the food label’s ingredient list carefully.

Speak to Your Healthcare Provider

Each dietitian has his/her own protocols, so while I allow my keto patients to deduct erythritol but no other sugar alcohols from total carbohydrate content, your provider may have different recommendations. As always, it’s important to speak to your dietitian about which foods and ingredients are allowed for your unique diet.

– Stacey

 

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.

The ketogenic diet for epilepsy should be used under medical supervision.

[i] Regnat K, Mach RL, and Mach-Aigner AR. Erythritol as sweetener—where from and where to? Appl Microbiol Biotechnol. 2018; 102(2): 587–595.

[ii] Livesey G. Nutr Res Rev. Health potential of polyols as sugar replacers, with emphasis on low glycaemic properties.2003 Dec;16(2):163-91.

 

 

Ella’s Journey with Dravet Syndrome and the Ketogenic Diet

Ella on the way to an appointment with her ketogenic dietitian

Ella is 9 years old. She has an orange belt in tae kwon do and is very excited to be going to a new school for 3rd grade. The best way I can describe my daughter is that I wish everyone had the same approach to life and towards others as she does. She is optimistic, kind, and compassionate to anyone she meets. One would not expect such a positive or loving disposition from a child who has been through so much in such a short time.

Dravet Syndrome

We assumed Ella was healthy when she was born a hefty 8lbs 15ozs. She was very curious and social as an infant. Ella was around 10 months old when we realized something was very wrong. She had her first seizure during a nap. It lasted over 2 hours and required her to be intubated for 2 days. We were told it was due to high fever, and were convinced it was the last one she would ever have until she started having them several times a week. She had been intubated 4 times before we knew what we were dealing with. Ella was diagnosed with a genetic condition called Dravet Syndrome at 3 years old. It is a rare and catastrophic form of epilepsy that brings with it a host of medical complications ranging from global delays to chronic infection. It never goes away and it does not always improve over time.

The Ketogenic Diet

Ella had been prescribed several anti-epileptics with little to no noticeable seizure control. She was often in a drug-induced fog or extremely irritable. Her neurologist recommended we put her on the ketogenic diet.

The decision to place Ella on such a restrictive diet was not one that was taken lightly. After researching it, we at first felt overwhelmed and reluctant to try it because of the potential adverse effects involved (the most common problems are digestive issues, although these can usually be managed under the care of a keto dietitian). We also knew that managing the ketogenic diet would be a time commitment, and we struggled with the idea that Ella would not be able to eat food other children could eat. I remember wondering how I was going to keep up with it. I worked full time and had Ella and her younger sister. There were a lot of factors delaying us (my husband and I) from making the choice. However, we decided that we had more to gain by trying it. We knew that if it did not work, we could take Ella off of it and try something else. Fortunately, we met several families who had their children with Dravet Syndrome on the ketogenic diet who were experiencing fewer seizures. They shared their stories with us and it put us at ease.

Following a brief admission to the hospital in order to safely wean Ella onto the ketogenic diet, her dietitian sent us home with several recipes. Ella’s keto dietitian encouraged us to try KetoCal® products to help us find some meal alternatives. KetoCal offered several tasty options for kids such as ready-made shakes (plain or vanilla) and powder mixes that could be used in sweet or savory meals.

After 4 days of being on the keto diet, Ella used the bathroom on her own for the first time. Her speech and cognition improved dramatically, and more importantly she went 6 months without a seizure. It was the longest she had gone without one since 10 months old.

My daughter has been on the ketogenic diet for 5 and half years. Part of why keto has worked for Ella is that we make her a part of the process by empowering her as much as possible. We create new recipes often, based on her requests. This gives her a sense of control over what she eats. Seeing Ella smile after she tastes something new is a huge pay off.

Advice for Other Parents

If you have a child with Dravet Syndrome or intractable epilepsy, please consider the ketogenic diet as a low side-effect option for managing seizures. The diet may not be right for everyone, but it works wonders for so many with uncontrolled seizures. Please do not hesitate to speak with your neurologist about having a consultation with a keto dietitian, or even reaching out to members of the epilepsy and ketogenic diet community. There are many groups on Facebook where you can connect with other families who have tried the ketogenic diet, such as:

You can also find a ketogenic diet provider near you here: https://myketocal.com/kdcenters.aspx.

-Dana

I was paid by Nutricia for my time to write this blog, however, my opinions are my own.

KetoCal is a medical food and is intended for use under medical supervision.

The ketogenic diet for epilepsy should be used under medical supervision.

Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.

 

Interested in sharing you or your child’s ketogenic diet story? Email us at MyKetoCal@nutricia.com.

Coco’s Ketogenic Diet Story

My sweet Coco just celebrated her 7th birthday! Coco loves being outdoors, swinging and listening to Taylor Swift.  She has the most infectious laugh and is always ready to say hi and make new friends! Coco has two older and two younger siblings that she loves to try to keep up with!

Infantile Spasms:

When Coco was just 4 months old she was diagnosed with Infantile Spasms, a rare and catastrophic form of epilepsy.  Our world was turned upside down with hundreds of seizures a day that left Coco weak and miserable. We had noticed something was different about Coco around three months old.  She wasn’t making noise, she slept often, and it seemed as though she suddenly couldn’t hear or see us.  One night she looked like she was startled by a toy. It happened again, and again and again.  I videoed and drove her to the nearest emergency room.  We were assured that her movements were “normal” infant jerks. It continued at home that night so we went to a hospital with a pediatric emergency room.  We were admitted for an EEG, MRI and several blood tests.  The neurologist diagnosed Coco with Infantile Spasms and explained to us that there was a high chance of severe developmental delay.  We were devastated.  We started a gold standard medication.  After two months, it wasn’t working so we tried another front line.  And then another.  None of them were working and Coco was having hundreds of seizures a day.

The Ketogenic Diet

After failing several medications, we traveled to Detroit when Coco was just ten months old to meet a neurologist specializing in Infantile Spasms. He suggested we try the ketogenic diet.  We had run out of options and were desperate to stop the seizures. I came home and called our local hospital and another hospital with a big keto program to get Coco started.  Both had extremely long wait lists and we knew waiting wasn’t an option.  The specialist in Detroit agreed to help us start the ketogenic diet and within a week we returned and were admitted to begin the diet.

We spent a week learning about our new life with breastfeeding, purees and keto.  Our dietitian was extremely supportive of me continuing to nurse so she came up with a “recipe” for us combining breast-feeding and other keto ingredients.  We also learned to mix purees with butter for meals.  The first few months on the diet were extremely difficult. It was a big adjustment to make all meals using a gram scale and being worried about every little thing including the shampoo Coco bathed with. We slowly started noticing a decrease in seizures and after six months of being on the diet, we had seizure control.  Once Coco’s seizures were under control, she started making progress, first learning to hold her head up without support and then sitting up!  The ketogenic diet was our miracle!

KetoCal®

As a toddler, Coco continued to struggle with purees and we had a hard time getting her to take in anything including water.  Our neurologist suggested trying the ready-to-feed KetoCal® 4:1 LQ Vanilla. It was life changing! It’s easy for “on the go” and for the past five years it’s been Coco’s primary feeding source.  We travel often and KetoCal 4:1 LQ is easy to pack and take anywhere!  Coco has been on the ketogenic diet for 6 years now and KetoCal has been an invaluable aide every step of the way.

The ketogenic diet has become second nature to our family.  We know exactly what Coco needs and what she can and can’t eat.  It’s sometimes a struggle explaining the diet to others and even though she can eat meals that have been measured and mixed correctly, it’s difficult to trust that she’ll eat everything correctly at school and summer camp.  KetoCal makes it worry free- we can send in her ready-to-feed KetoCal 4:1 LQ Vanilla and know that she’s getting the correct ratio and there’s no risk for error.

Coco’s Life Today

Coco had a tough battle the first months after her diagnosis and she is severely delayed.  She’s non-verbal but can show preferences toward certain things and is learning to communicate with noises and gestures. She’s non-ambulatory but we haven’t given up on trying to learn to walk!  She just finished first grade and can identify numbers 1-4 and some colors! We still don’t know what caused Coco’s Infantile Spasms, despite countless tests and traveling to see world-renowned specialists.  The ketogenic diet has given Coco a better quality of life and has been our saving grace!  We’ve tried weaning Coco from the diet a few times over the past few years and have been unsuccessful. We lose seizure control right away each time. We’re hopeful that one day she’ll be able to enjoy meals and treats with the rest of the family but for now we’re thankful the diet keeps the seizures at bay.

We were originally told we only had two or three years at most with Coco and here we just celebrated her 7th birthday!  I’m forever grateful for the specialist that led us to the ketogenic diet and for KetoCal for making our daily lives so much easier!

Advice for Other Parents

Lastly, my advice to any parents thinking of starting the ketogenic diet with their child: Make a six-month commitment and stick with it!  The diet can be a challenge but with tweaking and learning what works for your child, it’s worth it!

-Shelly

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.

KetoCal is a medical food intended for individuals age 1 year and up. It is intended for use under medical supervision. 

The ketogenic diet for epilepsy should be used under medical supervision. 

Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.