I’m a proponent of biomedical healing, which very simply means, identifying the imbalance inside the body and then treating it with appropriate foods and nutritional supplementation. This can lead to significant health improvements or even complete restoration of one’s health.
Today I want to share about trehalose.
Trehalose is a supplement that dissolves beta amyloid plaque, the plaque found in the brains of those with Alzheimers. It’s well-established that most adults with T21 who have not had preventative supplementation will develop Alzheimers.
When your child is young, thinking about cognitive decline in adulthood seems far away. As the parents of several children in their twenties, I can tell you that the years go by much faster than you would believe when your children are young.
Not only that – I’ve seen first hand reports from parents of children with T21 beginning this cognitive decline in their first and second decades of life. In the video below, Dr. Skowron shows the audience a slide of a brain scan from a four month old with Down syndrome that already has these plaques on it. That is downright terrifying.
So if you’re a parent of a young child with Trisomy 21 (or autism), this isn’t information that is applicable in the distant future. It’s relevant right now.
Here’s an excellent talk by Dr. Jared Skowron – Dissolving Amyloid Plaques in Autism and Down syndrome. He makes what are usually dry and complex topics easily understandable and interesting.
In a Facebook group that I’m on, I also see parents of young adults with T21 seeking help for their cognitive decline. Reading their descriptions of how much their child’s function has changed for the worse is heartbreaking. But what is incredibly heartening is to watch these same parents posting improvements and reversals of the decline as they add the appropriate biomedical supplements to their child’s diet. Trehalose is an important (though not the only) addition.
Trehalose is a white powder that is half as sweet as sugar that is easily added to food or drinks. I add trehalose to Rafael’s bottle along with his other supplements; I add it to a serving of unsweetened applesauce for Yirmi every morning before he goes to school, together with his supplements. I give it to them to prevent the plaque forming and causing damage in the first place.
A really nice side benefit of adding trehalose for us has been that they no longer resist taking their supplements, some of which have an unpleasant flavor. You know the saying, “Just a spoonful of sugar makes the medicine go down”? 🙂
Where can you buy trehalose? I got my first order of trehalose from Amazon; it was $16.49 for a pound. Someone brought that to Israel for me when she came. Then I had the opportunity to buy lift space and I made a purchase of 25 kg from bulksupplements.com. That was $149 for 55 pounds of trehalose, so obviously it’s significantly less expensive to buy it in larger amounts. Since I don’t know of anywhere in Israel to buy trehalose I was glad to have an opportunity to stock up. (In case you’re wondering, I don’t benefit financially if you click on these links.)
Though I’m sharing about trehalose in the context of supporting the health of a child with Trisomy 21, this has obvious application to those who are suffering from dementia.
Trehalose is inexpensive, tastes good and has major benefits….pretty amazing stuff!
Avivah
https://www.jpost.com/Opinion/Happy-birthday-Beth-560587
This was written by an old friend of my husbands. Your article educated me on why his sister has early onset Alzheimers and can prevent another family from the same pain.
I’m sorry to read about this very special woman and what she and her family are experiencing. I’m reluctant to write posts like this because there is so much resistance to and even outright hostility towards this perspective in the Down syndrome community. But I truly believe there is tremendous hope available with this approach.
Hi, Thanks for sharing such crucial information. Is it necessary for all kids? And adults?
Hi, Tehila – welcome! I share about the choices I make for my family but don’t make recommendations for anyone else. I don’t feel the need to give this to my neurotypical children.
HI Avivah,
As you know I am a big skeptic when it comes to supplements for TS-21. Too many poorly done studies, too much commercial hype.
I’d not heard about the trehalose neuro-protection link, and so did some reading. As the -ose suggests, trehalose _is_ a sugar, specifically two glucose molecules that are bound together. It gets broken down to glucose in the intestine, so what makes it into the blood is ordinary glucose.
I don’t think that trehalose can directly alter anything in the brain, since I don’t think that much will make it there. Yet there are effects seen in animal models of various diseases, which suggests an indirect effect. (I’ve linked a survey article below, and there are contradictory studies about trehalose actually making it to the brain.)
One very interesting possibility: apparently some strains of Clostridium difficile are particularly responsive (and not in a good way, they grow more and produce more toxins) to trehalose. If we were not discussing trehalose as a supplement, we might be discussing it as a food additive in the same tone used to discuss HFCS.
Trehalose might be neuroprotective because it changes the gut microbiome, in a generally positive way. However this might mean that any benefit from trehalose will depend strongly on the existing gut microbiome…and that with the wrong microbiome trehalose might have no benefit or could even cause harm.
Good luck exploring this further. Looks to me like a relatively easy and inexpensive supplement to try, and probably pretty benign if you don’t have an infection.
https://en.wikipedia.org/wiki/Trehalose
https://www.nature.com/articles/s41419-018-0749-9?error=cookies_not_supported&code=20c83182-8634-4031-9362-4c62a7ac3d3b
Jonathan, I was expecting a well-thought out reply from you on this post! Though we have different perspectives on supplementation for those with T21, we share a similar commitment to raising our children with high expectations and to be as fully included as possible. Thank you for taking the time to share your thoughts.
http://www.latimes.com/science/sciencenow/la-sci-sn-sugar-c-diff-20180103-story.html
This article is worrisome. There’s no definitive connection yet, but it’s something to keep in mind. I’m struggling with a sudden onset of memory loss and disorientation, and I’m always looking for supplements that can help.
Yocheved, I’m so sorry you’re experiencing this! That sounds frightening. If you like, I can put you in touch with an amazing biochemist who has spent her adult life studying supplementation and gives very generously of her knowledge to help people. Though her specialty is Trisomy 21, she’s helped many, many people with various health issues and unusual medical issues.
I’ve read several articles on the topic of trehalose and all of them leave me with questions. Which I suppose is how it should be, since they are sharing a possible association, not a direct cause and effect. It’s a theory and they aren’t suggesting that everyone stop using trehalose.
“Our study suggests that the effect of trehalose in the diet of patients in hospitals with RT027 and RT078 outbreaks should be further investigated.” https://www.bcm.edu/news/molecular-virology-and-microbiology/dietary-sugar-link-to-bacterial-epidemics?fbclid=IwAR3OW72XmkGmeiUEzlwpstBpMswLXAk5CiZMoa5zwUKNyDUGBo5CeDd4zEk
It’s interesting that despite numerous studies over the years linking sugar to just about every health issue, there have been no widespread warnings from the researchers and medical system. In fact, the meals served in hospitals and nursing homes are filled with sugar and processed foods that promote disease and physical and mental decline.
It would be amazing if a knowledge of how the gut affects immunity was practiced in hospitals and by mainstream doctors; it’s highly probably that bacterial epidemics would be greatly reduced.
I also wonder how prominent trehalose is as a food additive. It’s not something I remember ever seeing on the packaging I’ve looked at, but it could be it’s being used behind the scenes and not listed as such. Supposedly in Japan and some of the other Asian countries trehalose has been used more widely and for a longer period of time than in the US. I wonder if their research also shows the same kind of results as the US research. Interesting that the reseach hasn’t come from the countries who have been using so much more of it.