January-28-2020 | Daria Muir, M.D.
It is important that we all stay well informed. When a person receives a diagnosis of autoimmune encephalitis, they want to do whatever they can to improve their health. Some will reach for what appears to them to be a positive action and decide to change their diet. This can have very negative unintended consequences. To ensure your safety, and in IAES’ commitment to providing accurate information to assist you in being well informed on your road to recovery, today I’m going to give you a simple explanation about the Keto Diet.
What is it?
KETO is a diet that excludes carbohydrates completely. Basically, you eat just proteins and fats. Carbohydrates are the main fuel generator for the body (and especially the brain). They transform into glucose (the fuel). By switching to the KETO diet, one leaves the body without the fuel source. So, the body learns to turn other stuff into fuel. In this case, mainly fat. But also, the muscles. That’s what we call “putting the body into a state ok Ketosis). Is this good? Is it bad? For some people it is good. For some it is bad. For some it is an unnecessary risk, meaning there is no proof whatsoever that it helps, but there is proof that it can do some damage.
Who is a candidate for the Keto Diet?
Keto diet is recommended in a small number of diseases:
– severe Epilepsy, irresponsive to golden standard medication (being more efficient in children);
– Glucose Transporter Type 1 Deficiency Syndrome (a genetical disease that does not allow the body to produce GluT1 , so the brain does not get glucose- fuel. The ONLY treatment in this situation is keto diet!);
– it is also used by some nutritionists with patients that need to lose weight.
!!!! It needs to be assessed, recommended and monitored by a doctor!!!
There is no proof that the KETO Diet works in Autoimmune Encephalitis. (It can be recommended in severe Epilepsy post-Acquired Brain Injury in AE, but it does not treat AE, it treats the Epilepsy resulted from a brain injury from AE. As you know by now, Epilepsy and Seizures are not the same things. In AE we may have seizures, due to brain swelling and antibodies attacking our healthy brain cell. This is why we need immunosuppressant/ immunomodulatory treatment to control the disease.
Epilepsy is a disease resulted from the brain being injured and scarred.
Epilepsy can happen in AE but having seizures does not mean you have Epilepsy! Your doctor needs to asses that and tell you that you acquired Epilepsy!
Why? And why not the KETO Diet?
Now that you understand who an appropriate candidate for the Keto Diet would be, let’s discuss what can happen if you try the diet on your own without discussing it with your doctor.
Why does the Keto Diet need to be recommended by your doctor and monitored all the time?
Because it can be dangerous! Yes, it can be.
For diabetics. Also, people with kidney disease or who take medication that increases the risk of Kidney disease. For example, It can lead to major weight loss, below the normal BMI, that can endanger hormonal balance. It can increase pressure on the liver and kidney and eventually eats up your muscles too. The body can enter into ketosis (dangerous for some people).
KETO Diet is not easy, not harmless, not for anybody and not proven effective in AE.
Your doctor needs to assess and recommend that for you or for your child because it can be dangerous and can cause harm. If you have the conditions stated at point 2, then you might benefit from a very well supervised KETO Diet. Always ask your doctor! And please, don’t recommend it to other people, because it can harm them! Our concern is your safety and sharing accurate information for your best overall health.
Your generous Donations allow IAES to continue our important work and save lives!
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org