Discussion about this post

User's avatar
Susan Costen Owens's avatar

Hi, Chris,

When I first began to obtain the background I needed to understand the oxalate issues I found in autism 18 years ago (2005), I attended professional oxalate conferences. I was very surprised to discover they were only attended by kidney doctors and kidney researchers. To them, finding oxalate elevated in autism was an anomaly. In fact, finding oxalate elevated apart from kidney stone disease or genetic hyperoxaluria was in their minds, impossible.

Why did I start studying it? Beginning about thirty years ago, my academic work was all about sulfate and discovering its role in neurodevelopment. Years later, sulfate was found to exchange for oxalate on a special set of transporters called the SLC26A family of transporters.

I had already thoroughly explored the role of sulfate in autism, but this new science meant that now I needed to study oxalate to find out how oxalate could disrupt sulfate and other things important in autism. To accomplish that, I studied the oxalate literature for four months with a special focus on the genetic hyperoxalurias where it was known that oxalate traveled to the whole body.

I attended 7 professional oxalate conferences. To my surprise, the scientists there seemed to have formed an unspoken pact to ignore issues that were not centered around kidney stone disease. They were uninterested in how oxalate affected the general biochemistry wherever it went. I had already spent a decade recognizing complex issues in autism, so I knew that oxalate, by affecting sulfate, could alter neurodevelopment as well as hormone and neurotransmitter regulation, and it was a clear mitochondrial toxin. This new information required a reinterpretation of autism findings.

Before that, I had been studying sulfate's role, but now, oxalate could be a major disruptor. Formate was also a substrate of those transporters. Anyone can find literature about how formate and oxalate have been influencing each other, but I found nothing practically useful.

Chris, this is why I am particularly delighted to find your interest in this field and I like the way you are looking at it in the way it should have been studied a long time ago.

The oxalate field for so many years had blinders on...something that Sally Norton and I had both found and explored independently. Sally has been more into thinking about issues with diet, but I became more concerned about reaching academia and helping them study the oxalate the body makes under stress.

It was impossible to do a study in the US on oxalate in autism because the labs in the US that were skilled in measuring oxalate told me they would not test anyone unless they had kidney disease. That is why I recruited a highly qualified group of scientists to look at oxalate levels in autism, and we got astonishing results. That paper is ranked now in the top 4% of scientific studies and it has had 42 citations. That attention is really great, but it is still not motivating other scientists to look past the kidneys and find other types of diseases related to oxalate.

Chris, the commendable sort of thinking that you are doing is exactly what is needed to move oxalate research forward and into new territory. I eagerly invite you to further explore this fruitful area that has been in sore need of your skill set. I hope that you can generate experimental evidence.

In 2005, with a bunch of grateful autism parents, we formed the TryingLowOxalates network and it has has already helped more than 70,000 people discover the relevance of oxalate to their own health. This is the way we picked up an enormous amount of personal experience about reducing oxalate, but we have not seen nearly the amount of change we want to see in academia.

We're trying to change that. Our group performed the most successful fundraising of anybody this past year for the Oxalosis and Hyperoxaluria Foundation for Giving Tuesday, and that is because our vision is to support the sort of thinking you are doing to move the study of oxalate into a new era, where multidisciplinary and cross-disciplinary work rules the roost instead of being barred from the roost.

Kudos on your deep thinking! I would be delighted to see people like you get funded so that we can together solve the many human diseases related to oxalate.

Best wishes,

Susan Owens

Head of the Autism Oxalate Project at the Autism Research Institute

Founder of the Trying Low Oxalates network since 2005

Expand full comment
C Hess's avatar

You are so amazing! I am so glad I fumbled my way into your orbit...

Expand full comment
77 more comments...

No posts