Keto Chat Episode 68: Gillian Szollos Keto for Epilepsy

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Gillian’s Biography:
I am a health promotion consultant with a passion for helping ordinary people achieve extraordinary results with a ketogenic lifestyle. In 2014 I was diagnosed with left temporal lobe epilepsy. Three months and hundreds of seizures later I discovered the ketogenic diet and have been seizure free ever since. My experience has led to a passion for sharing the benefits of nutritional ketosis as well as the power of therapeutic ketosis to change lives and in many cases save them. I feel privileged to be able to share the stories of those who use keto as a therapy to improve their quality of life.

Transcription

Welcome everyone to this episode of Keto chat, I am your host, Carole Freeman. I’m a certified nutritionist and creator of the Fast Track to Keto success program. Today I’m honored to have our guest Gillian Szollos. I had to write down how to say it correctly. Welcome, welcome. Let me just give a real quick introduction to let people know who you are and then we’re going to dive in more, and you’ll get to tell all your story. And, oh my God, we can’t wait. We’re going to have a really great conversation today.

Gillian is a health promotion consultant with the passion for helping ordinary people achieve extraordinary results with a ketogenic lifestyle. In 2014, she was diagnosed with a left temporal lobe epilepsy. Three months and hundreds of seizures later, she discovered a ketogenic diet and has been seizure-free ever since. Her experiences led to a passion for sharing the benefits of nutritional ketosis, as well as the power of a therapeutic ketosis to change lives, and in many cases save them.

I feel privileged to be able to, she says, “I feel privileged to be able to share the stories of those who use keto as a therapy to improve their quality of life. Welcome, welcome, Gillian. We got to meet at keto [call 00:01:26] down in Austin, Texas September 2017, and we really hit it off and couldn’t wait to talk more because we’re both so passionate about helping people heal. Tell us more about that story. Relatively your diagnosis, what was going on, and what that was like. Oh, Gosh, that was a lot of questions all in one there.

Gillian Szollos: I can handle it, Carole. I can handle it. I have to back up a little bit, because originally I was diagnosed with epilepsy when I was a child. My mom was a pediatric nurse, and a really, really smart woman. Somewhere around the age of eight or nine, she noticed that I was having absent seizures. She wasn’t sure they were seizures at the time, but she was pretty savvy and she figured something was wrong. I always sent to the children hospital based in Ontario here in [inaudible 00:02:18], where the chief neurologist told my mother [inaudible 00:02:21], that what I had could not be epilepsy because I was not losing control of my bouts or my bladder.

Carole Freeman: Okay.

Gillian Szollos: No, no. It’s absolutely not. The requirement for an epilepsy diagnosis. However, at the time that’s what she was told. And, of course she knew better, but it meant that I did not receive any further follow-up. In fact, that was seen by psychiatrists for the next three years, because they said it was all in my head.

Carole Freeman: Tell us, we’re going to have a lot of viewers that don’t know much about epilepsy at all. Share with us like, what was your mom seeing that led her to think that you’re having absence seizure, and what is that?.

Gillian Szollos: Sure. Well, there are many different types of seizures. Epilepsy is a really interesting diagnosis, because it can happen for a lot of reasons and the seizures can be very, very different. Some people just look as if they’re zoning out for a few seconds, often for me, I would lock on to a feature in a room in front of me and I would just stare very, very intently at it for a few seconds. Sometimes I will hyperventilate, as my seizure progressed I would do the locking on, the hyperventilation and then I would need to get to the floor very quickly. I did not have drop seizure, where I instantly blacked out. I Was able to remember most of what people were saying to me but I was unable to respond.

That’s sort of quickly what was going on at that time. When I was 14, we moved and at a Christmas party my mother got the neighbor who happened to be a very well respected neurologist in a corner and said, “Hey, could you please see my daughter?” And he agreed to see me the following week, ran a battery of tests and within a week had diagnosed me with classic left temporal lobe epilepsy, and put me on Tegretol. Tegretol basically I had one grand mal seizure after that and then I went four years of being seizure-free.

Within four years, I also had absolutely no working memory [crosstalk 00:04:26], for me and [crosstalk 00:04:28] and I was going to university, and I really wanted to practice medicine, but it became obvious that my memory had been so severely compromised by the medication, that, you know, medicine probably wasn’t going to be the best choice, so I ended up in a sociology degree, but that’s another story.

When I went to university at 18 I stopped all the medication because I was really finding it just too much the struggle having to basically study for exams two days before because I couldn’t retain the information that was beforehand. That was a real struggle, but once I stopped at 18, I did not have another seizure. I went on merrily through my life, I had babies, I had a couple of auras that would happen around pregnancy or after pregnancy. I started to think, “Maybe I should get checked,” then I go and I’m having an EG and they’d say, “Yeah, there is something wrong with your grain, but you’re not having seizures, so have a nice day.”

That sort of happened maybe four times between the age of 18 and the age of 44. I’m horrified to have to admit to everybody how old I am, but hopefully I look okay for a 48, which is what I have now. Anyway, at 44, which was in 2014, I was driving home from the accountant’s office, I was really proud of myself, I just finished my accounting. It was a beautiful, beautiful day, and I had a massive aura. And my auras are quite uncomfortable. They are that sort of gastric rising that you hear people talking about. I have described it as being like every cell in my body having a minor explosion. It’s like Champaign bubbles but not nice Champaign bubbles.

It was very obvious to me though that there was something very wrong. It was the strongest aura I’ve ever had other than when [inaudible 00:06:29] seizures. I realized that I really was going to have to find another neurologist because, it’s been 30 years since I’d see one. I came home, that was I think, it was a Thursday or a Friday, then I had another seizure two days later. Then on a Monday, I had promised my husband faithfully that I was going to go and get checked out because I had just told him I wasn’t feeling well.

I went to the doctor on Monday and unfortunately my doctor who had been with me for 25 years had just retired and I had a brand new doctor who wasn’t even set up yet. So, I had to basically go to a walk-in clinic and say, “Can I have a neurology consult, please?” And they gave me one and I went back to work. And my husband picked me up for lunch and we took a corner in the truck and I had a full blown seizure in the car.

He had never seen me have a seizure. In fact, when I came out of it and he was freaking out, and said, “I’m okay, I’m okay. It’s just a seizure.” And he said, “What do you mean it’s just a seizure? I mean, why didn’t you tell me that you had epilepsy. We’ve been married for 15 years?” And I honestly, I didn’t think to tell him, because I didn’t think I still have it. It wasn’t something that had been a part of my reality for a really long time.

It was very distressing, but of course, I’m a Virgo and a type A and I was in denial, so I went back to work. I had an interview with a client that I needed to see that day, and one of my colleagues, I work in a community health center. One of my colleagues, a nurse friend of mine said, “Are you crazy? You need to be in a hospital now.” And I said, “Well, not until I’m done meeting with this client, I’ll go after.” And she took me and my husband met me at the hospital, and I walked in there and I said to the admitting nurse, “How long a wait am I looking at?” And she said, “Oh, about seven hours.”

And I said, “Right, forget about it, I’ll come back tomorrow.” And she said, “Well, why are you here?” And I said, “Well, I just had a seizure.” And she said, “Okay, you can come on in now [crosstalk 00:08:35] back.” And I had a seizure again within 15 minutes of getting back into the ER. I was in a CT scanner, I had an MRI, I had an EKG, I had everything done and worked up within the next hour and half, and I was sent out of the hospital told, “Do not drive, you need to see a neurologist right away.”

That was the beginning of hell. It was absolutely a horrific time in our lives. First of all the whole denial thing came into it again. You know, I’m a busy person, I had projects on the go, I had fundraising projects that I initiated and was responsible for and I had a really hard time letting go of that. In fact, I didn’t let go. I called into my HR department and said, “Please, please don’t put me on leave, I’ll do it from home, I’ll do what I have to do.” And to their credit they really did their best to help me continue to work, but I was seizing eight times a day. It was very, very difficult to keep things together. Not being able to drive, not knowing what’s happening. The more medication I got put on the worst my seizures became.

I really decided that, and my husband might suggest that I’m a little bit of a control freak when it comes to these things, but I decided that I had to take some control over this, because I had no control. I was completely out of control and I was seizing all night long and all day long and nothing was within my control anymore, except logging everything.

I started to track the days that I had seizures, the times that I had seizures, what kind of seizures they were, because that was changing as well. Whereas before they had been this sort of absence seizures that last 30 seconds. I’d feel like throwing up afterward and then I need to sleep, now they were lasting five, 10 minutes. They were Jacksonian March, they were tonic-clonic seizures. Some of them were lasting 30 minutes. This is nothing I’d ever experienced before. And I could see a clear correlation within a couple of months to my hormones.

I began to see that there was an overlap between when I was ovulating and when I was having my period and the worst seizures. I took this rim of information into my neurologist and said, “hey, what do you think about this?” And he said, “Oh, yeah, that looks like catamenial seizures, which are seizures influenced by hormones.” I said, “Well, does this mean that it’s happening because I’m premenopausal?’ And he said, “Yeah, probably.” But that was it.

Things got worse and worse and more worse and the medications, I was put on Caprol, which most people suggest as actually a really good place to start, because it’s got the least number of side effects. But I got to tell you, Carole, when you pull the leaflet out of the box, to most people, those are just words, but to people living with this, Caprol rage is a thing. I’m not a ragy person, I’m a pretty lovey happy person as you found out in Austin. Man, I was raging. I was screaming at my family, I was calling into work baling my eyes out. The only time in my life I’ve ever been suicidal was when I was on that medication.

One night late in October, I was bored to tears stuck in my house and unable to leave. I couldn’t drive, my husband was trying to take care of me, my elderly parents, our teenage daughter. Man, he was doing an amazing job, but I made the mistake of saying, “Honey, can you drive me to Michael’s because I want to do some baking.” He said, “Sure, I’ll drive you to Michael’s,” and off we trek. Then he said, “You know what? I still want to come in, if that’s okay I’ll just wait in the truck.” And I lost it at him. I completely blew up, I stormed out of the car, it was a freezing cold day, I had no appropriate clothes and he found me two and half kilometers away about to throw myself into an icy river.

And it was that day that he decided we needed way more help than we were getting from the physicians supporting me. He went on to Facebook, and I was actually a total Facebook phobia girl. That time I wasn’t on Facebook, I had no social media at all, and Andrew went on and found this epilepsy support group that talked about a ketogenic diet. He said to me, “Honey, have you ever heard of this?” I’ve been working in health for 20 years, and I never heard of it, but of course, I started Googling and within a few hours it was obvious to me that this was something we needed to try.

My husband, who is the hero of the story, quite literally, he started reading everything he could get his hands on, started baking for me, he started cooking for me. I went to my neurologist and said, “I’m going to try this keto thing, and he laughed at me and said, “Only works for kids under two.” Yeah, I know. It’s frustrating. But, to his credit afterwards he did present my case at [inaudible 00:13:56] at a local hospital. And then my family doctor who I said, “Yeah, I’m about to start eating 89% fat every day. And I was 240 pounds at that time. I should also add that.

She was not happy about that at all, but she had never heard of keto and she said, “You know, do what you need to do, I know you’re a smart person.” And I said, “Look, I just need you to run the labs. I need to treat myself like an experiment, I’m going to give you a workload of blood work. I just need you to run it, so that we can stay on top of this, and I can figure out myself, because I couldn’t find anyone in my community who was not eligible, including the hospital, by the way, because I did call them and they no, they only deal with kids and they weren’t willing to discuss it with me.

I went on the phone with Erick Kossoff, at Johns Hopkins and he was a darling and spent an hour on the phone with me and really put the foundation down for me. He told me where to start, he put me in touch with the Charlie Foundation, he gave me confidence and I went at it. Andrew cooked for me, and I will never forget that on November the 5th, I had a 30 minute long seizure. I was alone with my daughter, I started October the 23rd, so exactly two weeks before November the 5th.

I was alone at home with my daughter, I had this horrendous seizure that would not stop, so I kept sort of semi-surfacing out of it and then dropping again. It was very, very frightening for both of us, and I said to my husband after that, “Look, I know the medication is making this worse, we have to stop the medication right now, and I guess we’re going to have to try and find another medication.” But the next day I saw my neurologist, and I stopped the medication I was on. I started to titrate down, and I didn’t have another seizure. And then I didn’t have another seizure, and then a week went by, and I did not have another seizure. And then 49 days went by, and I did not have another seizure.

And then on day 49, I had an aura. A really strong aura, and it was the day before my [inaudible 00:16:04] was due. I looked at what I was doing with the ketogenic diet, which was obviously working for me, and I did a little bit of tweaking. I removed anything estrogenic from my diet. So, I got rid of coffee, I got rid of soy, I got rid of anything in plastic anywhere I could get estrogens or pseudo estrogens into y system, I cut it out. And I boosted anything that would help me make progesterone, because my estrogen and my progesterone were like this, far away.

Everyone of course said they are within normal ranges, but they were very, very far away. And progesterone is somewhat protective against seizers and estrogen is somewhat not. I did that little tweak and that’s been it. I’ve been completely seizure-free, I have my three year kid ketoversary coming up. On top of that, I lost 90 pounds-

Carole Freeman: 90 ponds. Oops!

Gillian Szollos: 90 ponds, bye, bye! And you know what was funny about that was that, I was a really healthy person before. All through my 20s, I exercised, I ate well “low fat, high fiber” and I could not lose the weight. I had Lipedema and most of the time my butt and I just could not lose the weight. But Keto, pulled it off me, and not only that I had [inaudible 00:17:29] that I was taking pill medication for and was really, really struggling with all gone. My arthritis, which I was taking anti inflammatories for, no longer required anti inflammatories. The only time I do is if I go on really steep hikes and then sometimes on the [inaudible 00:17:46] too afterwards. But for the most part, the anti-inflammatory effects of the diet had a profound impact on my overall well-being. The seizures are just a part of the story. They are the thing that actually got me to be the healthiest version of me that I’ve been probably, since I was 18.

Carole Freeman: Wow! Oh my gosh. The whole time you’re telling stories, I just keep getting waves of goose bumps, and most of your story of what you’re sharing is like, “Oh, yep, we see it all the time,” but the story of epilepsy, I mean, I have worked with a couple of people with epilepsy, but is not the major portion of who I work with. So, I just really appreciate hearing about that. And I think it’s, or I know it’s a really important thing we need to get out there. You probably know, what’s the percentage of the population that has diagnosed and undiagnosed epilepsy? Yeah.

Gillian Szollos: One in 100 people have epilepsy. One in 100. That’s an awful lot of people. It’s sad, I talk to my friends with epilepsy and they recount strays of waking up in hospital in hand-cuffs because when they have seizures it looks to other people like they are drunk or having a mental break-down. That’s really unfortunate, and I encourage everybody who doesn’t see this, go online and Google what does seizures look like. Because you’re going to see a lot of tonic-clonic seizures, which is what they tend to portray in the movie and TV shows and things. But look up absence seizures, just look up a variety of seizures, because there are so many and it’s important to know how to recognize them.

In fact I had a great privilege of interviewing Mike Dancer when I was at the Metabolic Therapeutics Conference in Tampa in 2016, last February. While we were doing the interview, actually right at the end he had a seizure and I knew that he was having a seizure and. He didn’t know yet, but I could see that it was coming. He had a full seizure and then afterwards he was conversing with me. We were having a full blown conversation but I knew he wasn’t back yet. Anybody else would have thought, “Oh yeah, he is good to go,” you know, “Leave him on his own,” but I was really uncomfortable doing that, because I knew it was going to be another half hour before he could actually remember what was happening. It was just going to be that big missing chunk of time, which is really difficult.

It’s one of those disabilities that, that are scary to live with, especially for those who have drop seizures, I am extremely blessed that I have an aura, I have time usually to stop doing what I’m doing, get of the [inaudible 00:20:40], stop riding my horse wherever the situation is. I don’t ride anymore but I did when I was younger, and that was always the thing my mom was worried about. I have a seizure while I was riding and I fall off.

Thankfully I don’t have that issue, but others do and it’s really terrible for me when I hear about people not even dissing people who have epilepsy for a disability that they have no control over, and it can certainly make things really difficult. That’s one of the reasons I’m so passionate about this, because in Ontario, we actually have guidelines that had been published very recently for physicians and for people with epilepsy that say, try one medication, and if one doesn’t work, try two. And if two don’t work, try three, and if three don’t work, try surgery.

Nowhere in these guidelines does it suggest a dietary approach. Even though the research is very clear that a ketogenic diet for a great number of people has a better seizure protected activity than any anti- epileptic drug on the market. To me that’s unethical not to give people that opportunity to try it. I found out about it because my husband loves me. I did not found out about it from my doctor and that’s when I started realizing the more people I interviewed who use this therapeutically the more I realized that they were figuring it out from the guy at the gym, who is body building. They were figuring it out from Facebook, they were figuring it out from Instagram, but they were not getting information from their doctor.

Carole Freeman: I was at a conference earlier this year in Phoenix, it was put on by a hospital and endocrinologist and [inaudible 00:22:44] and all those other eg-

Gillian Szollos: Ologists.

Carole Freeman: Ologists. It was a conference about a ketogenic diet for basically brain stuff. The Q&A sessions from the doctors were, “Why is this not a front line thing that’s offered?” And they’re just really, really, hesitant to … Because the way they’re trained, I think this is my own opinion. The way they’re trained is that diet doesn’t really have that big of effect. Like it’s not a first line therapy. I mean they’re trained that medications are really what’s going to fix this, and this is something seriously wrong and the diet is just like going to have negligible effect. The medications are the things that are going to be the powerful things that really can change things that are happening. But you and I both know that diet is extremely powerful especially in something like this.

Gillian Szollos: Absolutely.

Carole Freeman: So, we’ve got a long way to go before that is offered to people. And the other thing they say too is that, “Well, it’s really hard for people to implement especially this food culture we have in this world where parents just feed kids lots of convenience [garbage 00:24:03] curb, and it’s too hard and-

Gillian Szollos: [crosstalk 00:24:06] for the carbonated, refined sugars, additives and processed foods?

Carole Freeman: Yeah.

Gillian Szollos: I think the other piece about the physician resistance is really just a lack of understanding, and a lot of people really think that it is the traditional ketogenic diet. Like actually TDK, in which everything has to be weighed and measured down to the milligram, and high doses of MCT to supplement those kinds of things, which is not in reality what the majority of us practice when we’re using this therapeutically.

It’s so much easier than that. And what the literature shows is that the traditional ketogenic diet works best for children under the age of two, but for anyone over the age of two, then in modified [inaudible 00:25:01] diet is what works as well. In some minor cases they may have to become a little bit more strict but, I actually talked to doctor [inaudible 00:25:13] about this the last time I saw him in conference. And I said, “You know, when you’re doing the research ad looking at the people who are poor responders to a ketogenic diet. Are you actually taking into consideration the possibility that those people who have been on anti-epileptic drugs for sometimes many, many years have developed food sensitivities to ketogenic foods. Because I’ve spoken to a number of people now who have significant food allergies to coconut and avocado.

If you are just lumping all those people into the group that that did not respond to keto, maybe you need to delve in there a little bit more and see if there are food sensitivities that are actually triggering the seizures, once removed, maybe, you’ll have significantly higher proportion of responders. And nobody has looked at that yet, but I planted the seed in his brain, I really hope somebody will look at that in the future, because I think it’s a good possibility.

Carole Freeman: Well, let’s talk about that, you know, what your diet was like in the beginning when you’re … I always get bonus kitty hairs on me here. What was your diet like first when your husband was the main cook for you? Was it more extreme then or did it … You shared how you changed a couple of months in, almost a couple of months eliminating those [inaudible 00:26:46] estrogens or xenoestrogens. What was you approach in the beginning and how as it morphed over the three years?

Gillian Szollos: That’s a super question, and I think it’s a really important one. Because what I don’t want is for people to think, “Oh, I might try this,” and then to get dissuaded. I’m a big believer in bio hacking. When I started, I started follow on way I measure everything. And I started with very, very high fat, usually above 80%. I didn’t worry too much about calories because it was really hard for me to eat above a calorie deficit with that much fat. I haven’t eaten anything that hasn’t been a calorie deficit for the last three years, because it’s nowadays I only eat one or two meals a day.

But back in the time, I definitely, I was still bound to the three meals, two snacks kind of mentality. I would have my breakfast, my eggs and bacon, and I ate a lot more bacon [inaudible 00:27:50] than I do now too. I definitely had eggs and bacon for breakfast, I would probably have a cupful of [inaudible 00:27:59], coconut oil, cocoa butter, butter mixed together with something, some stevia, some whatever struck my fancy at the time. I’d have those for snacks, I would definitely have a lot of [faddy 00:28:15] teeth. I didn’t use the coffee because coffee actually produces estrogen, so I got rid of my coffee. But I still have it once in a while.

But I switched the tea and then lunch would be salmon, broccoli covered in butter, dinner probably something similar again three four ounces of protein as fatty protein as I could source, as clean protein as I could source, lots of baked salads with cheese and lots of olive oil and nuts and seeds. And then I would have treats. I would have … My husband is an amazing keto baker. Like absolutely amazing, I tell him he should open a restaurant and we would be [inaudible 00:28:56]. The first to build things out of stone. [inaudible 00:29:01] do that anytime soon, but he would make me keto cheese cake, which I adore and I couldn’t do this diet, I don’t think without cheese cake. I don’t think I could [inaudible 00:29:09], so I have to admit to my weakness there that cheese cake is on the menu.

I would have that pretty routinely. I’d probably have [inaudible 00:29:18] almost every day and little treats, keto treats every single day for that first year. By year are two I had cleaned up my diet a lot, so I was really trying to avoid any kind of processed stuff, I was using a lot less sweetener, I was using more stevia at the time, I’m using, now. Thanks to Facebook, I’m using stevia now.

Carole Freeman: Which book?

Gillian Szollos: That’s the Stevia deception.

Carole Freeman: Okay.

Gillian Szollos: Yeah. I’m definitely cutting back on all my artificial sweeteners but that in particular. I started cutting out meals. I really could not handle eating breakfast at all, so I would just have [fatty 00:30:00] tea and the morning. And then I would have big salad for lunch and then protein and green leafy vegetables or broccoli at supper. No wine sadly. I didn’t do any wine at all for the first year, I started to bring that back in a little bit in year two but, one other things about being in a ketogenic diet for any length of time is you become really [inaudible 00:30:25]. I can handle two ounces and then I need my [bed 00:30:30], I don’t even like opening a bottle of wine unless I have friends around because I know it’s going to get wasted.

Now, my diet has changed a lot. So, definitely every year I get cleaner. I eat a lot less, I do intimate fasting, almost every single day I have at least 16 to 18 hour fasts, frequently I would do tree day fasts, I’m about to embark on a five-day fast with one of my Instagram buddies has skipped my buttons, I got to do it.

Carole Freeman: When are you doing it, I should join you. I’ve done a couple of three but I haven’t done a five yet.

Gillian Szollos: Okay, well. Why don’t you get together with me we’ll do that [crosstalk 00:31:12]y three year ketoversary. That will be fun, because I’m going to need all the support I can get. And it’s not because I’m hungry, I don’t get hungry when I’m fasting at all. The mentor challenge of being around food and being around social environments where food is always available. That’s much more of a struggle for me than actually being hungry.

Now, I don’t eat very, very much. In fact, I do [inaudible 00:31:45] scans every year, because I really want to know [inaudible 00:31:47] me being a scientific experimenting. I want to know exactly what fat mass I have lost, what [inaudible 00:31:55] I have gained. I started weightlifting, resistance training, probably about 10 months ago now. I guess it was yeah, like January. And I started it seriously at that point. I sort of been dabbling before then realizing you know, as my age current menopausal woman it’s important to do resistance training for bone health.

I really started doing the … getting really into it. Loving my dead lift day, loving my benching day, and it has made a big difference. But everyone says you can’t gain muscle unless you’re eating at least one gram of protein per kilo of body mass. You can’t, or you’ll definitely lose weight if you’re in a calorie reduction over time. And you know what? Last year I did not lose a single pound, not one on the scale, but I lost six and half pounds of fat and I gained six and half pounds of lean mass.

I love seeing that on the [inaudible 00:32:57] because I can actually see it. Now, [inaudible 00:33:01] lost four pound, I don’t know what happened there but, eating [inaudible 00:33:03] all the time. I’ve been in a calorie deficit every single day, because I physically cannot eat more than 1,600 calories in a day, I just feel sick. And I don’t have gull bladder, so it makes it a little harder to process the fats and, I take [inaudible 00:33:25] to try and medicate that, but it’s been an interesting experiment for sure.

Carole Freeman: Yeah, it sounds like a successful experiment?

Gillian Szollos: Yeah, I like to think so.

Carole Freeman: Well, it’s kind of obviously to me, but what keeps you going with this? This is one of the biggest arguments the doctors will say of why they don’t want to recommend it, is highly impalatable, it doesn’t taste good, it’s so hard to follow it, it’s so hard to stick with it. We know that’s not true, but especially when you’re describing your diet in the beginning I was like, “Salmon covered in butter and broccoli? ” Like, “Oh, cheese cake and all these stuff?” I blame it on when this diet came out in the 20s and 40s they just didn’t …we didn’t have the amazing chefs that we have now. And they were just trying to make kids drink shakes maybe with corn oil and soy bean oil. If you were doing it that way, yeah, that’s … Not tasty, not palatable and not sustainable. How do you stay motivated to keep doing this especially after you’ve been symptom free for so long, do temptations crop up or what keeps you going?

Gillian Szollos: That’s a really good question, and yeah, occasionally temptation does crop up. I find that in the first year I really missed bread, and the second year my husband discovered a couple of I really great pseudo bread recipes, which I would have every once in a while, toasted and covered in peanut butter. But I don’t even do that anymore, and the keto treats hardly ever. I do admit to a [inaudible 00:35:03] brown ice cream addiction that I just developed, and if’ trying really hard to say I’m only making one batch of ice cream a month, otherwise I’m just going to eat it every day.

But I don’t eat treats every single day anymore, I don’t even eat them every week anymore. That’s also helpful with the bringing down the artificial sweeteners. And yeah, keto is as palatable as it gets, and in what case better than fat. Nothing [inaudible 00:35:27] awesome with fat in it. And my [inaudible 00:35:29] has changed do much. You know I bite into strawberry now and it’s an orgasmic experience. I can have all the nuances of the flavor and the sweetness is just mind blowing. But, I remember the days I used to deep my strawberries in sugar, and then I don’t need to do that anymore.

In fact, while I was chasing some of the samples at [inaudible 00:35:55] I was saying to the developers that, “You guys need to have sort of keto one and keto two, because-

Carole Freeman: [inaudible 00:36:01].

Gillian Szollos: … a lot of people need that sort of help getting on to keto and still feed their sugar addiction, but once you’ve been on for a while, your color changes so much, I can’t eat most of that, because it is too cloyingly sweet for me. Whenever I make anything usually use a third or quarter of the recommended sweetener, and whatever recipe I’m making or my husband is making because let’s be serious he is the one who actually does most of the keto baking around here.

But certainly it’s totally doable and in terms of motivation, that’s easy, I don’t want seizures. So, that’s pretty easy to be motivated.

Carole Freeman: Yeah.

Gillian Szollos: I do from time to time have the question flat across my mind am I feeling okay today? And if I have that feeling, I take my keto levels and I watch my curbs very carefully. If I haven’t even thought about it, then whatever I’m doing is working. Sometimes in the early days, I was 20 grams of total curb a day, period, did not go over, watched everything, watched every supplement that went in my mouth. I was very, very careful. Now, I will have days on occasion where I get up to 40 or 50 grams of carbohydrate, but 30 of them will be fiber. So, big salad days.

For the most part if I’m doing that well and exercising or dragon boarding or having a big cardio day, that works for me, but I couldn’t do that every day. There is no question, I need to be under 25 to 30 total grams of curbs for me to feel at my optimal level of functioning.

Carole Freeman: Let’s talk about then the difference between what I’ll just call the keto fat diet for weight loss, or nutritional keto [inaudible 00:37:58] call that. But jumping on that bandwagon and a therapeutic ketogenic diet.

Gillian Szollos: Absolutely. Well I have a 28 inch waist right now, so it’s not a fat diet. I have 28 inch thighs too, but that’s [crosstalk 00:38:12]-

Carole Freeman: A diet that you can stick with for three years and maintain the weight loss and keep going, yeah, doesn’t sound like a fat to me.

Gillian Szollos: Exactly. And I think that’s what’s really important. The other thing is, keto is going to be different for everybody, and there is such a broad discussion around that. And I think it’s important to have the questions, you know, what does it look like for you because it’s not going to look the same for me as it does for other people. I think that changes over time. Does keto work for weight loss? 100% absolutely yes. I can’t tell you how many amazing transformations stories I have seen and amazing people I have talked to, who tell me that with the weight that they lost, they also gained mental clarity, emotional stability, mental stability, lost anxiety and depression symptoms. There is a lot that ties into that and I think there is so much more about that gut brain access that we still really don’t know about. I think part of what keto does is really lower that inflammatory response in the body and enable healing.

That said, there are some people who don’t seem to respond well to it from a biochemical perspective. Their blood [inaudible 00:39:31] doesn’t look awesome and that’s a whole another discussion. But there are still questions that need to be asked and one that cholesterol test does not necessarily mean that keto I not for you, but is definitely something that needs to be discussed with how professionals who get it. And that’s part of the issue, is that health professionals don’t always get it. I know my own doctor when I went to her and I said, “I want an NMR [inaudible 00:39:58].” As you in your [inaudible 00:40:01] probably know, an NMR [inaudible 00:40:02] profile looks at particle signs as well as particle number within the greater liquid profile pane that most people have done.

The first time I asked her she said, “But I can’t do that.” And I said, “Why not?” She said, “Because I don’t know how to interpret it.” “But I do, so I can teach you,” and she said, “No, no, no, I’m going to have to send you to a [inaudible 00:40:27] for that test.” And I said, “I’m not wasting tax payer’s money for that.” And I went to my endocrinologist and said, “Could you please put it on?” You know, my hormone work up, and she did. And then I check the NMR profile to my family profile and said, “So, here it is. As you can see, everything is golden, and by the way, jut understand case you ever have someone starting keto who has cholesterol levels you’re not happy with, that’s when you run your NMR.

This year when I asked her for my repeat NMR she said, “Sure, no problem.” That was not-

Carole Freeman: I’ll just insert in here though. I’m going to put a link in the show notes to Dave Feldman’s website, cholesterol code, because what we think we know, even about the NMR isn’t what we think we know. There is a lot more, even if somebody is doing keto and they’ve got an NMR panel that they’re not happy with, that doesn’t necessarily mean that this isn’t working for them as well. We’ll just put that teaser in there, look it in the show notes if you want to know more about how dynamic the cholesterol system is. The link will be down there … Yeah.

Gillian Szollos: [crosstalk 00:41:36] as well, he is got a lot of really-

Carole Freeman: Oh, yeah. The fat [inaudible 00:41:40], okay, we’ll put that.

Gillian Szollos: He had a great talk at keto corner as well and it just really, really interesting. Every time I hear him talk I learn something new and [crosstalk 00:41:51], it’s learning and. And we’re each individually, we have our own level of metabolic damage, and we have our own story. I think that’s an important note, is that keto needs to be individualized. It’s not one size fit all, and one macro is going to fit for everybody.

I get sad actually when I look at some of the stuff online and I see people hating on individuals for pursuing a particular path or saying it’s always calories, bottom line, bottom line, bottom line. It’s just so much for a [inaudible 00:42:30]. And I really think that individuals need to act for themselves. I encourage everybody to read, read, red, watch YouTube videos, listen to what speaks to you and if you’re not finding success, just keep digging because there is a path and you may require some really serious tweaking when it comes to [inaudible 00:42:53] foods or foods that you have sensitivities to that are really preventing you from achieving the health goals that you want.

That kind of brings you back onto what you were asking from before about the therapeutic versus nutritional. Nutritional ketosis is a lower level of ketosis, if we’re going to follow Stephen [inaudible 00:43:12] sort of guidelines. Anything over 0.5 is considered nutritional ketosis. Another great place to be and people can swing in and out of ketosis as they are meant to be, and be metabolically flexible, and that’s great. I don’t think everybody needs to be in Ketosis, 365 days a year. I really don’t. But it’s great to be able to have the enzymes that allow the flexibility, and that’s how we were designed. I think that’s-

Carole Freeman: Yes, high five, I told you that.

Gillian Szollos: [crosstalk 00:43:42] when it comes to therapeutic ketosis, you’re talking about much higher levels of ketosis. And there is that whole ratio piece, so if your blood sugar and your ketones are roughly on par, then you’re set to be in therapeutic ketosis. That said, to my knowledge, and I’ve read pretty extensively on this subject, there are no studies that correlates specific ketones levels to therapeutic outcomes for anything, whether it’s [crosstalk 00:44:12] epilepsy. I could be super great at 1.2 to three. That’s actually my happy zone. I’m pretty happy there. Anything over three, I don’t feel good. I don’t sleep, I get flashed, you can see my ketones are up now because I actually had a pretty heavy duty [inaudible 00:44:31]. And I don’t feel well over three.

My friend [inaudible 00:44:38] who I also had the privilege of interviewing and writing about, if his ketos got into the range of three he’d be having seizures.

Carole Freeman: Interesting.

Gillian Szollos: He needs to keep them high. And different people are going to have different zones and when you’re looking at your ketone monitor and you say, “Oh, look, I have four.” What does that even mean? Because it doesn’t necessarily mean that you are utilizing your ketones effectively, what it means is that you’re making them and that you have a bunch on storage, but the it doesn’t necessarily mean that you are using them. And one of Patricia [inaudible 00:45:20] slides at her talk in Tampa, was amazing. It was awesome ad really enlightening, because she compared blood [inaudible 00:45:32] ketone levels, which is what I take every single day alongside blood glucose. With Ketonix, acetone exhaled ketone monitors.

Basically you’ve got really high acetone and moderate ketones, what it means is that you’re using them for fuel effectively. But if you have low acetone, and high [inaudible 00:45:57], what I means is that you have an ample supply but you may not be using them very efficiently to actually use as fuel. When you look at those two things in juxtaposition, I love that word, then you can really see some cool stuff happening. When I see people chasing ketones, my answer always comes out how are you feeling, and how are you achieving what you want? Whether that’s seizure freedom, or metastasizing your brain cancer or having relief from Parkinson’s symptoms. How are you feeling? Because if you’re not feeling good, then you need to do more tweaking. It doesn’t mean that it’s not for you, but it mean that there is some more bio hacking that need to happen.

Carole Freeman: Yeah. Very, very cool stuff. So, we might see a day soon where you’ve got both meters going so you can really get or somehow meter that, and the, I don’t how they can do both at the same time. It’s got to be [crosstalk 00:47:01]-

Gillian Szollos: I don’t know [crosstalk 00:47:04] to figure out.

Carole Freeman: Yeah, I’m going to be participating in some research, the dinner that I’m organizing in Seattle next week, we’ve got some researchers there that are going to be comparing the blood ketones and breathe ketones and they are going to be publishing that research soon.

Gillian Szollos: [inaudible 00:47:22].

Carole Freeman: Yeah. So, published research that’s going to be looking at that. I don’t know that they are correlating symptom really for anything more of that. They are just looking at the relationship between those. The other thing that kind of goes back with what we’re talking about earlier, I’ll just plug it in right now because, what percentage of people do you think are out there that probably have some form of epilepsy that a undiagnosed or unaware? The reason I’m asking this is because you and I were talking at dinner at the night we met and I started sharing with you symptom that I have that still lingering from my car accident, where it’s just like a momentary feels like my brain kind of goes off line, I don’t roll over or pass out, nobody even notice.

It’s just a really weird feeling, and I’ve talked to several people about it and you were talking that you were saying like that sounds like it could be an absence seizure. I just really open my mind are eyes or awareness to, I wonder how many other people have something like that. Whether it’s because they been in some kind of head trauma or situation or just something else that isn’t working quite right in there brain. Do you have a sense of percentage of the population is undiagnosed or …?

Gillian Szollos: I don’t, to be honest. I can pull a number out of here but it would literally be that. However, I do feel that when you’re talking about diagnosing epilepsy it’s because it’s having an impact on your life and your quality of life. If it is going undiagnosed, then chances are whatever you’re experiencing you’re able to morph into your life and it’s not causing you to have a car accident or preventing you from being able to work.

I think lots of us have that. We all have moments. I certainly noticed that I still do, I won’t say I go offline, but I perceive that I have been locked on to a focal point for more seconds than maybe would normally. That’s one of the things that makes me think, “Mmh, am I feeling okay?’ And then check what I ate and see if maybe got exposed to many curbs by eating out somewhere. But for you, I think if that were the change, if that were to leave its baseline and to last longer or morph in some other way, then I would really recommend going and having an EG.

Now, that said, I’ve had hundreds of EGs, I have never had a seizure on an EEG, even when I’ve taken the portable ones home, even when they kept me in the hospital, I just I don’t, but thankfully we have technology now that allows me to film them when I have these seizures. I was able to do that to show doctors, but nothing was ever captured on EG. I do have epileptic form wavelengths capture on EG. Whenever I get the strobbing or the hyperventilation, they will tell me that I have an abnormal brain rhythm.

But that got better after I started keto, because I actually have my EEGs so they can compare, and the megahertz that they are comparing at actually did improve after I started keto.

Carole Freeman: Mine I did some [inaudible 00:50:40] oxygen therapy that pretty much relieved mine and I that’s one of the things, the more you can do the better. But it’s a very expensive therapy, but covered by insurance for this purpose actually, and so I may go in and do some more of that force some-

Gillian Szollos: In a perfect world, I think [inaudible 00:51:02]oxygen therapy is just on the leading edge too. I think there is some really neat stuff happening there with cancer and prior to radiation treatments. I’ve heard dome personal stories as well, has read some of the research around that and it’s really fascinating.

Carole Freeman: Yeah. I want to ask, so what … Going to talk about your website but I also just want a really quick throw in here like, what are your top tips or recommendations if somebody is listening to this and they are like, “Oh my gosh,” like, “Keto might be the answer for my epilepsy or something else is going on. What are your top tips for … How can they get started or what should they do or …

Gillian Szollos: That’s a great question, and that’s actually one of the reasons I decided to make websites.

Carole Freeman: Okay. Perfect.

Gillian Szollos: It’s under my resources, I have videos, I have books, I have research articles. It is broken down into epilepsy, cancer, Alzheimer’s disease. I haven’t done the weight loss thing yet, because keto for weight loss is everywhere. I mean, anybody has got a cookbook out, has feed information there. Really I was looking to try and support the therapeutic community a little bit more. Definitely the Charlie Foundation and [inaudible 00:52:27] Friends are the very first places I would go for information on starting a ketogenic diet if you have epilepsy.

They were incredibly helpful for me, there is a great support system there, there is a community there, there are online communities of people who use keto for their children or for adults. I found that the majority of them are actually for children because, of course, you can control a child’s diet more easily than adults. But I’ve helped adults and I’ve just said, start, that’s what you have to do . You just have to start. And from that starting point you can do the tweaking. I will always encourage people to start a little bit more on the side of tracking than on the just forget about the calories, forget about macros, just count your curbs and eat lots of green leafy things.

I think that’s a little too simplified, if you’re looking at this from a therapeutic perspective, but that’s just me. That’s what was successful for me and other people may just not even be able to start unless they need to super simplify it and then that’s okay. But if it’s not working, then you might need to tighten up on those curbs a little bit and play it by here. But certainly just start and the Charlie Foundation has phenomenal resources.

Carole Freeman: What’s the name of your website?

Gillian Szollos: My website is ketoalldayeveryday.com.

Carole Freeman: Awesome. We’ll link that down below too. I’ve got a list of things I’m going to be putting in the notes down below.

Gillian Szollos: That’s fantastic.

Carole Freeman: Also be a good resource thing and will lead back to there. So, was there anything else that you were hoping I would ask you about or that you were hoping to share?

Gillian Szollos: Yep. There is one thing. Well, we were in Austin and I had the opportunity to meet with so many wonderful, motivated professionals. I’ve had this idea lingering for a while that the keto community could actually really step up and fund the nutritional studies that we want to see. There is no big farmer that is going to fund nutritional studies in the way that we want to see them. And it came to my mind that, you know what? We all pay five bucks at Starbucks once a week, why wouldn’t the hundreds of thousands of people who are now in the keto community not then together and actually put their money where their mouth is and say, “Yes, I want to see research that is nutritionally focused for specific things that we know this works for but we just don’t have the research to make this happening on a regular basis or make doctors suggesting it on a regular basis.

Out of that, like my dream is to actually have a committee of some of the biggest brands in the world along with some [inaudible 00:55:27] people who can take and research proposals, sort through them, pick the top eight and then put it out there to the keto community and say, “What do you want fund?” And then have a great big drop box where we can dump the money and make this happen a whole lot faster than they are going to happen if they just go through the academic routes.

But Ii thought I had to start somewhere. I couldn’t start with raising a million bucks in the next year, much as I would love to. Maybe that will happen but that’s not where I’m going to start. One of the interviews that I did, and the interviews are all on my website under ‘keto lifers’ and they’ve been up at ketogenic.com, which is another amazing resource if anybody just starting. I highly recommend that you search them out, they’ve got something for everything there and it’s very digestible. It’s not too sciency but it’s all backed in science, which is what I really appreciate about that site.

All of these stories were up there and hopefully they’ll be back again. They are doing some changes on the website at the moment, but you can access them through mine. One of the stories with Barbra [inaudible 00:56:36] whose daughter, [inaudible 00:56:38], has a very rare glycogen storage disease called [inaudible 00:56:42] disease. I knew nothing about this before I started in the keto universe, and sort of happened across Barbra story. And I was just so struck that her beautiful, wonderful, vibrant little nine year old daughter, who spend 11 months in a wheel chair got up and walked to school three days after starting a ketogenic diet. Three days!

You or I take two weeks to get into keto, [inaudible 00:57:11] patients take three days. Right now there is no research on keto and [inaudible 00:57:19]. Absolutely none, and the going recommendation is that these people who cannot convert glycogen in their muscles to glucose for energy, basically drink [inaudible 00:57:31] every day.

Carole Freeman: Yeah, drink [crosstalk 00:57:33] all day long.

Gillian Szollos: … so that they have glucose I their blood the whole time. But that just makes them obese and metabolically seriously challenged, whereas giving them alternate fuel in the form of ketones, changes their life profoundly. And her story made me , and I hope that the way I’ve written it is going to rally be impactful. But, what I want to do is I want to do $70,000 from [inaudible 00:58:00] research that we can go right now. We’ve got the researchers, doctor Stacy recently who has also has [inaudible 00:58:05] herself, Jeremy Michelson, who I believe is and San Diego, he is a researcher. And I’m so excited to say that Ryan Laurie and Jake Wilson, from the [inaudible 00:58:16] in Tampa are also going to collaborate on this project, all we need to do is get them money.

The keto community needs to come out right now, slap 70 grand in that bank account, so that we can start recruiting real people in December and have this published six months later. Can you imagine the impact that that would have? First of all it would be really sexy in the newspapers, second of all the doctors will actually know what ketogenic diet is, because they’ll be able to say, “Oh, yeah, that all kind of makes sense.” And then maybe, just maybe, when people go their doctor and say, “I’m thinking about trying this out,” their doctor will be onboard.

I’ve seen some place for groups had 200,000 pp in them, but if we can all get together or if 1,400 people out there can find another 10 people to put in 10 bucks, we got it done. I think the time is now. I really do. I think the keto community is so passionate, we know the difference it has made to us, it’s time to let that be known from a scientific perspective, and the only way to do that is with human trials and I just really hope the keto community is going to get behind us, because I’m putting it all out there.

Carole Freeman: So, do you have set up the people can donate the that now[crosstalk 00:59:40]-

Gillian Szollos: I do. I have already set up the you-sharing page and it’s up and running. They can donate right through the website, and I’m really hoping that we’ll have all the money raised by, I know it’s crazy to think, but by December, because these scientists would be ready to start recruiting for this project in December. One of the hardships around this is that the [inaudible 01:00:01] community is talking about keto because it really makes such a huge difference to them. We need to find people who’ve just been diagnosed and haven’t started a ketogenic diet. So, the faster we do this, the easier it’s going to be to pull this research together.

And then the next time a child is diagnosed with this disease, then that child is going to actually get the right information right from the get-go instead of saying, “Yeah, you need to start bringing your kid on [inaudible 01:00:31] twice a day.” The community really believes that this is underdiagnosed and that there are a lot of kids who’ve been labeled as lazy and just not liking athletics, who probably have this or some other form of glycogen storage disease. It’s just an underdiagnosed. There is a big potential for some incredible news to be made, lives to be changed profoundly, pain to be prevented and I think we’re the ones to do it.

Carole Freeman: Remarkable. That’s really, really [crosstalk 01:01:11]. Yeah. Making things happen.

Gillian Szollos: Hopefully.

Carole Freeman: Yeah. This is great. You know this is, we’ve experiences as this whole community just comes together and just a loving embrace and we all just want to help everyone we can, with what we know has been so transformative for our own health. I just applaud you for continuing that whole mission and getting more people well.

Gillian Szollos: A lot of thanks, Caroline. The only other piece to my website, which is just in its infancy right now, is a place to call. I know you’ve been to a couple of big conferences before but some of your listeners might not be familiar with what a scientific Posta actually looks like, but what I want to do in my perfect dream world is the gather those anecdotal stories of therapeutic and nutritional ketos as people who lost lots of weight, who’ve really found keto has changed their lives positively and put them in this elegant, simple format where they can all be displayed in this online Posta hall, So researchers can come and they can look at the methods and say, “Wow, all these people are basically eating the same macros and having these amazing results, maybe I should do some research there.

Whether it’s weight loss or bi-polar disorder or [inaudible 01:02:30] or whatever. Anybody out there listening would like to put together a Posta, I have a walk through on the website as to how to do it and I’m happy to help individuals do it as well. I’m just making a simpler template today actually just before we got online. I’m really hoping that that’s going to be a cool thing that will develop over the next year.

Carole Freeman: Fun, cool. It’s like the high school science project only way more powerful.

Gillian Szollos: Yeah, that’s me, your high school science.

Carole Freeman: Well, Gillian, I thank you so much for being here. I just have one final question for you. The meteor is coming to earth today, we all know it’s out last day on the planet, we’re all demise is imminent, what’s going to be your final meal?

Gillian Szollos: Oh my gosh. That’s a really good question. I’m going to have to think about that for a second. My final meal, I think it would have to be keto sushi. Oh, Sushi is so much, Sushi and [inaudible 01:03:33], and with that would have the amazing burning kiln wine that I just brought back from Niagara with my husband, which is so delicious and only three grams of curbs per liter. Very, very low curb and super delicious. I would definitely have the wine. Or maybe a scotch, I’m not sure. The depends, I think it’s the meteor.

Carole Freeman: It’s going to wipe us all out.

Gillian Szollos: Then it will be scotch.

Carole Freeman: Maybe a little bit of both. Well, thank you so much for [crosstalk 01:04:08]

Gillian Szollos: In the morning [crosstalk 01:04:09]-

Carole Freeman: Yeah, it doesn’t matter. Thank you so much for being here, thank you for sharing all this, thank you for all the hard work that you’re doing to spread the healing power or get your message out there. I know this is going to impact so many people by giving your story out there and it helps more people. We’ve got a lot of things in the short notes down below, all the things we’ve been talking about. If you’ve enjoyed this interview give us a thumps up, subscribe if you want to see more. We’ve got more amazing stories of your transformation and other writers out there they are doing really great work in the world. So check out all the other videos we got here on this series. Thanks for watching, that’s all for now. We’ll see you next time. Bye.