Diet for Narcolepsy: A Science-y View from 30,000 Feet (Part 3 – The Gut Connection)

Diet for Narcolepsy:  A Science-y View from 30,000 Feet (Part 3 – The Gut Connection)

Finally! Part 3 to this series is here! This third and final post is all about the GUT connection to diet for narcolepsy.  How in the world does your gut have anything at all to do with narcolepsy since narcolepsy is in the brain?  Well I’m here to enlighten you and I think you’ll be astonished at just how strongly some of our narcolepsy symptoms are tied to some of the issues we can have when our gut is not healthy.

Just as a reminder, this three part series is meant to be a high level overview of how I’ve interpreted the science and applied it to the diet my mom, my son, and I follow, thus the “30,000 Feet” part of the title.  Once you’ve been on the diet for a bit and the narcolepsy fog has lifted enough for you to think straight, we’ll go into much greater detail and dig deeper into the science-y stuff.  As always, my hope is that in this series I’ll have provided you with enough solid and concise information that you can share it with your doctor, family, and friends in order to gain their support in your endeavor.

In Part 1, you learned the basics of orexin. We looked at orexin’s common functions and what turns it on and off.  Remember?  The ON/OFF switch.  Then in Part 2, you learned how diet can not only help with keeping orexin ON when you need it but also how it can turn it OFF when you don’t.  And now Part 3 – The Gut Connection…let’s get to it!


Think your inability to regulate sleep, anxiety, depression, fatigue, memory failure, brain fog… just to name a few… are solely narcolepsy related?  Mmmm, perhaps not solely.  It may be an issue in the gut.  Yep, the GUT.  Let’s take a look at the gut in a whole new way and discover how what we eat has a direct impact on our BRAINS and thus our SLEEP, as well as feeling healthy and well overall.

When I was in elementary school, we were taught that all things “gut” were the Digestive System.  The mouth all the way to the anus was about digesting food.  But guess what?  It is sooooooooo much more (I could do a page of O’s here).

Did you know there are other names for the gut?  The newest term is the Second Brain, or more formally known as the Enteric Nervous System.  Brain.  Nervous.  Those words imply something other than digestion, don’t they?  Then there’s this whole other part of the gut called the microbiome which is a community of trillions of bacteria that live within the gut and, when working properly and are healthy, help us live healthy lives (since they are located in the gut and are a part of the Second Brain, I’m going to lump it all together in this post as the GUT in an effort to keep you from going cross-eyed with too many new terms).

Before we dive into the things the gut does that we usually think of as brain/Central Nervous System tasks, let’s refresh on what we originally thought of when the Digestive System was mentioned. Put simply, we ingest approximately 25 tons of foreign matter from the outside world through our mouths during our lifetime and the gut has the monumental task of breaking it down for us.  When the gut breaks down the food we eat, it pulls vitamins and minerals out and passes them through the small intestine’s walls and on into the bloodstream.  Our blood then transports these items to the rest of our body.  Any unnecessary leftovers and waste are then shuttled further into our Digestive System and are eventually expelled via our activities in the bathroom.  That’s super basic, but there it is in a nutshell.  It’s pretty much just a processing and recycling operation.

But our gut is also a major part of our Nervous System and thus the new title of Enteric Nervous System/Second Brain.  Every single inch of it is embedded with neurons from the spinal cord that sense the area and coordinates the activity.  BONUS INFORMATION: There are even orexin receptors in the intestines that sense orexin.

An integral part of our Nervous System is its little messengers.  These messengers are neurotransmitters and they influence learning and memory, mood and emotion, appetite and satiety, and even sleep and wakefulness.  Guess where a whopping 95% of these are made?  In our gut!  Things like serotonin and dopamine for example.  I want you to get a feel for how important it is that so many neurotransmitters are made in the gut but I can’t dig deeply into the uses of all the neurotransmitters, there’s just not enough space in this post.  So let’s at least take a look at serotonin because there’s this thing it does that’s is pertinent to narcolepsy.  Serotonin is a building block for melatonin, which helps us sleep.  With so much serotonin being made in the gut, it means there’s 400 times more melatonin made there than is made in the pineal gland of the brain.  Wow.

Beyond the gut producing 95% of our neurotransmitters, did you know that new research is showing that our gut stimulates production of chemicals called cytokines as well?  These are important for inducing sleep, particularly deep, non-REM sleep.  Are you beginning to see the importance of gut health?  Ha!  We’ve just hit the tip of the iceberg folks.

Orexin is also critical in the Second Brain because the nerves in the intestines sense orexin… remember I said earlier that there are orexin receptors in the gut?  Orexin triggers the movements that push the food through our body.  So if your orexin levels are low, your digestive system slows down.

And then, as if the gut didn’t have enough to do, it is also our LARGEST immune organ in the body.  Our gut houses 70-80% of our immune system and is our FIRST line of defense aimed at killing and expelling foreign invaders like bacteria, viruses, and toxins.  Our intestinal lining is only ONE cell layer thick so we have lots of good bacteria in there coating our intestinal wall (this is our microbiome) and this bacteria is the first in line to protect us.

Well, all that I’ve said thus far has been about a healthy gut.  What can make it UNhealthy and what are the consequences of an unhealthy gut?  Take a deep breath… now again… okay, let’s dig into it the ugly bits.

Simply put, today’s typical diet of foods high in refined carbohydrates, sugar, and processed foods is killing the good bacteria in our guts and causing inflammation.  This leads to something called Leaky Gut (ew…) and that nastiness leads to a whole host of other issues far worse than the thought of our guts leaking.  Our bodies begin to freak out and then it starts attacking itself.  We stop being able to fully absorb nutrients.  In the end we wind up sick and tired and unhealthy.  But I can’t leave you right here without an explanation of some sort so get a bib or something and we’ll dive into the icky-ness that is the Leaky Gut.

Earlier I said that in a healthy gut the cells lining the intestinal wall, and the microbiome coating it, act as a barrier that allows only properly digested vitamins and minerals to pass through the small intestine’s walls.  Now, usually, the spaces in the intestinal wall that things pass through are sealed pretty tight but when the gut is irritated by some external trigger, these spaces loosen and begin to “leak” larger items (undigested food) into our blood.  Thus the term “Leaky Gut.”  Well these larger particles are deemed as invaders and the immune system freaks out and launches an attack.  If you let the stuff leak out for too long and it happens too frequently the body starts mistaking your own cells as foreign invaders and BAM!  You have an autoimmune issue brewing.  Leaky Gut also causes an imbalance in the microbiome, causes reduced nutrient absorption, can cause digestive and neurological distress, and all those lovely things a healthy gut does for us is thrown into chaos.

And guess what happens to orexin production when the immune system starts to fight the good fight?  It is drastically curtailed.  Remember the on/off switch we talked about in Part 1 and 2?  Well this immune response due to Leaky Gut is just as effective when it comes to turning OFF our orexin cells.  Nighty night.

Hmmm…what are these pesky things that irritate the gut and cause an imbalance?  There’s lots but we are going to focus on food since the series is about narcolepsy and diet.  We’ll dig into the other things at a later date.

There are two things that seem to consistently trigger symptoms in narcoleptics via the gut:

  1. Carbohydrates (this includes sugar)
  2. Wheat (specifically, a protein found in wheat called gluten)

So let’s talk about these triggers…

Oh those gloriously yummy carbohydrates and sugars.  They not only directly reduce orexin production as I explained in Part 2 (the OFF switch), but they also alter the gut’s microbiome…you remember, those bacteria that are creating more neurotransmitters than our brain does?  Well those wonderful neurotransmitters are created by the good bacteria.  Every gut also has some bad bacteria and these baddies LOVE sugar.  They eat it and multiply.  Pretty soon they take over and the microbiome shifts to the dark side.  We end up with more of the bad and less of the good.  All of a sudden we have issues thinking and sleeping and feeling…all those good things that neurotransmitters do can’t be done because we don’t have enough good bacteria making them.

And yeah, wheat/gluten… it’s in all the yummies too.  Besides gluten being a known neurotoxin, when we eat something gluten-y, like bread and other flour-y products, it goes through our stomach and when it arrives in the small intestine it triggers the release of a chemical called zonulin.  Zonulin signals the intestinal walls to open wide.  Leak, leak, leak…out go toxins, microbes, food particles, etc. into the bloodstream and interior tissues where they aren’t supposed to be and BAM!  That immune response we just talked about starts.  And remember what I said happens when the immune response is triggered?  It is drastically curtailed.  Um, hello!?!  OFF switch.

You know, it’s been really tough to organize this post in a way that makes sense to someone looking at these connections for the first time.  The primary difficulty comes from the fact that they are all interconnected.  There isn’t just one effect.  The nerves and microbes and food all interact with each other and very often amplify each other’s actions. If we aren’t aware of these other functions of our gut we can get stuck in a sleep inducing cycle without even trying. One wrong move and it can all snowball out of control.

But it’s not all gloom and doom.  If we control our carbohydrates to keep orexin in the ON position for wakefulness, we also keep control over our carbohydrate/sugar loving bad microbes.  This keeps the bad ones at bay while the good ones thrive and produce all the good neurotransmitters.  When we reduce carbs, we naturally reduce all the gluten-y yummies like bread and other flour-y products since they are high carb foods.  If we eliminate gluten altogether, we can heal that Leaky Gut and stop the inflammatory response in our body that is curtailing our orexin production.  And to bring things full circle, a low carb diet has been shown to have an anti-inflammatory effect as well as help tighten the spaces in the intestine’s lining.  We are now aware of the other functions of our gut and that scary, out of control snowball that we talked about in the previous paragraph?  It gets halted in its tracks before it can do more damage.

Well!  That’s it!  Part 3 wraps up my thoughts on the science behind the diet my family and I have adopted to mitigate our narcolepsy symptoms.  Can you see why all the information that I’ve laid out to you in the three posts was compelling enough for us to make changes in our diet AND can you see why it’s working for us?  I hope you’ll stay with me for future posts because now we get to talk about HOW to make all this part of your daily life.  Please stay with me because I’ve got a road map for you that you’ll be able to navigate even in your sleepiest moments.  See you soon!

Your Madcap Miss (a.k.a. Gina Dennis)


  1. Orexins in the brain-gut axis
  2. Orexins and gastrointestinal functions
  3. Effects of inflammation produced by chronic lipopolysaccharide administration on the survival of hypocretin neurons and sleep
  4. Intestinal permeability and its regulation by zonulin: diagnostic and therapeutic implications
  5. The Effect of Diet on the Human Gut Microbiome
  6. Butyrate Enhances the Intestinal Barrier by Facilitating Tight Junction Assembly via Activation of AMP-Activated Protein Kinase in Caco-2 Cell Monolayers
  7. Involvement of cytokines in slow wave sleep
  8. Neuropathy associated with gluten sensitivity
  9. Indigenous Bacteria from the Gut Microbiota Regulate Host Serotonin Biosynthesis

MORE INFO:  Dr. David Perlmutter has several books out there that dive deeply into the connection between the gut and the brain.  In his first book, Grain Brain, he focused on the destructive nature of grains on our brain health but he also spent time talking about how carbohydrates can hurt it as well.  THEN in his second book, Brain Maker, he dove into the microbiome and how the Standard American Diet, as well as some of today’s common medical practices, have set up the brain for reduced function and disease.  VERY interesting reads should you decide to take a deep dive into the connection between the gut and your brain.  But wear your parachute folks, because these books are more techy and science-y than my 30,000 foot view series.

Let me be totally up front here…I AM NOT A DOCTOR, nor am I a nutritionist, I only have a tiny amount of formal training in such things as a Health Coach.  But I am a person with narcolepsy who uses dietary and lifestyle changes to mitigate my narcolepsy symptoms.  I’ve been experimenting with these changes since July 2011 and have successfully maintained a high level of narcolepsy symptom management since that date.  And so has my family with narcolepsy.   This website contains our personal stories, failures, and experiments.  In this website I will share with you the information that I have found most credible and some practical ideas for mitigating narcolepsy symptoms.  I beg you to check with your doctor before initiating any of the dietary changes I speak of, especially if you are taking any medications.

Madcap Disclaimer

    8 Responses to Diet for Narcolepsy: A Science-y View from 30,000 Feet (Part 3 – The Gut Connection)

      • Johnnie, I appreciate your input. I state this post as part of the Science-y section of my website because I’m not a doctor or clinician. But in response to your comment, I ask that you check PubMed… quite a few things published in this peer reviewed repository that deal with leaky gut. I could have posted a dozen more links to this research but tried to keep things simple since this was a 30,000 foot view of the information.

    1. I am 53 years old and was just diagnosed back in May of this year 2017 of having severe narcolepsy. I have a lot of other issues, gut issues. I know I have a leaky gut. I dealt with a leaky gut and adrenal gland insufficiency with holistic doctors back into 2013. I wish I had kept on using that. By 2015, being off all the diets, I have been going downhill. So after the sleep study it does show severe narcolepsy. All of the medicines make my GERD worse and make me even sleepier.I do need your help. Do you ever come to South Carolina for conferences or do you ever take phone calls or anything? Please keep in touch with me. I was sitting in the sleep area doctor’s office today and found this. I just got home and was reading it. Thank you so much! I will be looking at your books. God bless you and thank you for your research.

      • My goodness Karen! So much to tell you…

        I haven’t yet been invited to South Carolina to speak. Maybe some day. BUT the presentations I do this year in Florida and in Oregon will be put up on the website in either late September or early October so you’ll be able to see the information.

        I’m thinking a lot about your gut issues though. When our gut is under attack it causes inflammation and inflammation can shut down orexin and exacerbate our narcolepsy symptoms. There’s a great book out there by Dr. Amy Myers called the Autoimmune Solution that I think you should check out. I think that protocol could help you greatly.

        My email is so please feel free to stay in touch.

    2. I’m a teenager with narcolepsy and I just wanted to let you know how much I appreciate the research you’ve put into this because everything I’d read on narcolepsy was either super broad or like way way way sciency- and then your blog is perfect because you combine your amazing writing skills with your research and it’s just so awesome!:) I just have a few questions- 1.) you mentioned coconut oil somewhere and I was curious if you take it daily plain or incorporate it into your drinks/ food some other way 2.) I’m a teenage girl so cutting some of the sugar out of my diet will be super hard so what do you think my first small step should be to gradually get into the diet? 3.) As an avid athlete will this diet benefit me/ properly fuel me And 4.) Is there any narcolepsy-awareness/ leadership/ conference that you know of that I can get involved with as a high schooler and learn more about narcolepsy? Thank you so much can’t wait to read more!!!:)

      • Rachel, I’m so glad the effort I’ve put out there was understandable. It took me FOREVER to boil it down to the bare details and sometimes I think the posts are still too long. Eeek!

        To answer your questions:
        1) Coconut oil is amazing because you can get the benefits of doing a ketogenic diet just from using coconut products. A ketogenic diet produces ketones, and coconut products convert to ketones when ingested. I typically suggest PWN start with adding coconut products to their routine BEFORE changing their diet. It will get you a bit of wakefulness that you can then focus on the harder parts of the diet. I drizzle it on everything I eat, use extra virgin or an MCT oil so you don’t add a coconut flavor to your meal. I use coconut cream in smoothies. Other ways to add this to your routine is via Bulletproof Coffee (coffee, 1 T unsalted grassfed butter like Kerrygold, and 1 T of MCT oil, BLEND and enjoy), and a couple of fat bombs as snacks throughout the day(Google “keto fat bombs” and see if any of the ones using coconut products appeals to you). WARNING!!!! Build up slowly on the MCT variety… if you go too quickly you will have DISASTER PANTS… no kidding here. Start with 1 teaspoon a day and add a teaspoon every couple of days till you have built up to approx 2-3 T a day.
        2) Yes, cutting sugar is super hard. Start with the coconut fats I mentioned above. Then try finding replacements for the sugary things that are low carb. Start with one at a time and build up from there.
        3) My son is a PWN and does this diet. He has climbed mountains, completed a 262 mile solo kayak race in 3 days and a tandem 340 mile kayak race in 2.5 days, and ran the Boston Marathon. His body fuels on fat instead of carbs. To start out, do what I’ve suggested above. Eventually you will need to start cranking down on the carbs and turn your body to a fat burner. I’ll have a post out in late September/early October that will walk you through the steps. Also check out Ben Greenfield’s website as he is an endurance athlete that uses keto.
        4) Narcolepsy Network has teen leadership programs. They also focus heavily on teen involvement and presentations at their annual conference. This year’s conference is in Portland Oregon the weekend of October 27-29. AND I am presenting the how to’s of this diet in two presentations. One will be to PWN in general but the other will be focused for TEENS. 🙂 Maybe you can join us there?

        Good luck and stay in touch! My email is if you want further guidance.

      • Good question! Dairy products like full-fat/real butter, heavy whipping cream, sour cream, real Greek yogurt, ghee, and high-fat cheeses. Fish like salmon, mackerel, sardines, and herring. Oils like olive, avocado, coconut, and macadamia nut. Meat fats if from clean sources, such as beef lard/tallow and bacon fat. Seeds like flax, chia, macadamia, pecan, walnut, and almond.

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