Learning

madcapmissadventures

From madcapmissadventures, I have learned I have to keep working at this anti-narcolepsy diet thing. If I slack off my diet (or exercise), my narcolepsy comes back with a vengeance. Thank you Gina for just being out there. We CAN beat narcolepsy!

gluten free + low carb = no narcolepsy

Top Ten Reasons I Will Never (Not) Be Paleo

10.  I feel incredible.  I’m confident that 90% of people would feel 100 times, if not more, better consuming a “paleo”-type diet. I don’t like confining myself to the “gluten-free” or “paleo” movements, but I am both gluten-free and “paleo.” The longer I go without eating processed foods or sugared-alternatives, the more I can feel how food actually affects my body. Whenever I “cheat,” and eat a high glycemic-index meal, I crash and feel like crap for the next day. I don’t like feeling like crap. So I keep eating paleo.

9.  Freedom from food. Sugar is addictive. Bread is addictive. Prior to going gluten free, I noticed NOTHING I ate didn’t have some kind of wheat (or at least food starch) in it. In fact, most times, something starchy was the center of the meal. That’s the American way, right? “Here, honey have a roll.” My sugar addiction began when I was young, craving sweets and cakes, anything I could get my hands on. I’m sure I had it worse than some, but maybe not. As I became older, my sugar addiction spiraled out of control, and I had no idea it was even happening. I had learned in school to stay away from candy, but that grains and bread were the bottom of the food pyramid. I was SUPPOSED to be eating >300 carbs per day! When I moved out on my own, I couldn’t keep chips, candy, sugar, ice cream, or even alchol (it’s just another source of sugar for me) in my house for fear I would overeat… and that’s when I started thinking maybe it was the sugar.

Like most “dieting” women I know, I counted calories and fat (like I was instructed to by the bread-on-the-bottom-food-pyramid-nutritionists) like a mad woman. I took my weight 3 times a day. I obsessed over my clothes-size, how I felt in them, and was self-consious to eat in front of people. I would restrict my eating to point of refractory bingeing. Even if I only skipped lunch, I was trying to devour everything in site come dinner. This was before I found gluten free / paleo.

On gluten free / paleo, I no longer obsess over the calories and sugar I am putting into my body. I have complete freedom from the obsession of food. I eat when I am hungry. I don’t eat when I am not. I don’t worry about the nutritional content of what I’m eating most of the time, because my diet is inherently filled with nutrient-dense foods. Simple as that.

8. No more naps. Mid-afternoon crashes are the worst. On paleo, I don’t get them any more. I remember as a highschooler, coming home and sleeping for 2-3 hours every day. I was so fatigued. I have had a nap twice in the past year. Adding it up, that’s more than 730 hours of gained productivity, which is desperately needed as a hard-working graduate student.

7.  “I’m regular.” I don’t want to delve into the realm of too much information, but prior to Paleo I was incredibly irregular. Irregular cycles, irregular digestion, irregular sleeping habits, irregular moods. More than that, I had never been regular. Many of my earliest memories of childhood were surrounded by GI problems, mood problems, and sleeping problems… but how was I supposed to know they weren’t normal? No one ever really told me how often I was supposed to be going to the bathroom. Anyway, you name it, on a low-fat, high-fiber diet, mine wasn’t normal. By body’s internal clock was just all warped. On paleo, I’m like a machine. Everything is all “regular,” a feeling I haven’t had in my entire life until now.

p.s. – I hardly ever eat fiber.

6. Better cholesterol. I get made a lot of fun of where I work because I love to eat pork rinds. Lots of them. I will eat a bag for lunch without blinking. They are such a common and frequent part of my diet, that it seldom occurs to me that it’s weird, until someone comments that I am so unhealthy for eating them (ironically, I am the skinniest person at my work).  I eat a very high cholesterol diet. I eat red meat once or every other day. I eat about 3 eggs a day. I eat pork rinds to my hearts content (insert pun), and snack on nuts. Sounds like I should have the worlds worst heart, right? Wrong.

I began having my cholesterol monitored after a blood test revealed high LDL and low HDL cholesterol, and high triglycerides.  This was a bit scary for me, having a family history of heart disease.  My abnormal cholesterol test came at 20, while I was doing a low fat, grain-based diet, and running a mile a day.

Since going “paleo,” my LDL is normal and my triglycerides are down. I still haven’t been able to raise my HDL, despite maintaining very frequent cardio exercise (>5/miles of running per day), but I think this may just be true genetics at play.

5. I’m thinner and more tone.  I have never not felt fat. Even when I was thin and severely calorie-restricting, I always felt fat on a grain-based diet. In addition, as I entered late adolescence/early adulthood, I actually started becoming fat, peaking at 150 (quite large for my small 5’3 frame) while in college. I became fat because I was eating the recommended diet of low-fat, whole grain. In addition to becoming fat, I also became sick. On paleo I maintain a healthy and fit 115 no matter how much I exercise or how many bags of pork rinds I eat.

4. I’m happy. All the time. This seems like a weird statement, but, I’m always happy. Literally. I remember struggling with depression as young as Kindergarten. My grandmother told me in my teenage years, when I battled daily with manic depression and fatigue, “sometimes as a child you just looked so sad.” It broke my heart to realize that my family had noticed my sadness at such a young age. On a low-fat, whole-grain diet I cried, screamed, had emotional outbursts, resented, and surfed the lowest-of-lows and highest-of-highs. On paleo, I’m simply happy. That’s it.

3. No more pain. As a young girl, I remember my mother struggling with chronic headaches and backpain. I never knew her agony until I was about 17 years old, when I began having chronic headaches and migranes with auras.  I had also had joint pain (primarily knee and back) for most of my life (the doctor’s decided I had “growing pains,” which is code for, “it’s all in your head.”) I dealt with the chronic headache and low-grade aches and pains by taking 800mg of ibuprofen every day. For years. After going gluten free, my chronic pains and headaches subsided, but the auras persisted. When I went fully paleo, the frequency of auras (without pain) reduced from once or twice a day to once every two months or so. They still happen randomly every once in a while, but not nearly with the frequency they used to, and their usually triggered by taking a hot shower. I now take Advil once a month for cramps, but some months I don’t need it at all.

2. Paleo (nearly) cured my narcolepsy. I first became gluten free about a year after I was diagnosed with narcolepsy, and became full paleo about a year after that. Before deciding to become gluten free, I realized I was getting tired after eating, and if I went all day without eating, I was less tired. I went searching and found a truly incredible blog called The Zombie Research Institute. A woman whose brain clearly worked like mine did, who cured her narcolepsy with gluten free? It sounded ridiculous, but I was desperate for anything to work. I tried it. Very strict. And it worked. Gluten free combated narcoleptic attacks and hypnogogic hallucinations, but I feel my most awake and alert by excluding all refined sugars and grains and adhering to a paleo diet.

1. Paleo saved my lifeThis might seem like an inflammatory statement (another pun), but it’s not a joke. I believe going gluten free (and later paleo) literally saved my life.  Throughout my childhood, adolescence, and young-adult years I was only sick and sad. There were many many days where I was quite sure that I wouldn’t make it past 40. I had physically struggled for so long, that I didn’t want to make it past 40. I couldn’t bear the thought of living another 20 years in tiredness and pain.  Now, I am exited to age in health and grace; and, actually look forward to tomorrow.

In addition to posting these reasons that I “do paleo,” the new fat-diet of the day, quite proudly, I would also like to take a moment to respond directly to some of the “points” raised in the original post “Top 10 Reasons I’m Not Paleo” by Cheeseslave.

1. To first answer Cheeseslave’s question:

But honestly, if you’ve been eating paleo for any length of time, don’t you miss grilled cheese sandwiches? Quesadillas? Pizza?

 

Sure. Yes. I miss pizza, pudding, ice cream, M&M’s, and especially peanut butter. I miss sugar the way a 3-pack-a-day smoker misses a cigarette. There is a twinge of pain everytime I see someone eating a doughnut in part because I hate wheat, but also in part because I WANT THAT DAMN DOUGHNUT.

That said, I miss the narcolepsy less than I miss the doughnut.

2. In response to:

Is the modern epidemic of “gluten intolerance” really caused by eating wheat? Or is it possible that something else is causing gluten intolerance?

There is a theory that antibiotic drugs cause an imbalance of gut flora and cause prevent the digestive tract from secreting enzymes that enable us to break down complex proteins such as gluten. Sounds a lot more plausible than the idea that wheat suddenly started causing gluten intolerance out of nowhere.

In the first place, the alternative theory isn’t bad. I agree that something other than gluten could be causing gluten intolerance. Genetics, a changing gut microbiome, antibiotics, sugar, birth control. Alternative theories are fine and dandy, but gluten is a very good candidate, as the protein has been demonstrated to be inflammatory and barrier-compromising to the intestinal tract all on it’s own. It also stimulates antigen presenting cells to be “preactivated” among “normal” healthy individuals without celiac disease or gluten sensitivity. Here’s another one demonstrating positive benefits of gluten-removal from IBS patients who did not have clinical celiac diseaseBut a different cause for gluten intolerance, doesn’t justify continuing to eat it. It would still be a gluten intolerance; wheat’s fault, or not. 

In the second place, gluten isn’t the only thing found in wheat. Wheat germ agglutinin (WGA) is a lectin found in wheat and has been demonstrated to have antinutritive effects irrespective of gluten intolerance and celiac disease. Concentrations of WGA are higher in the seed and young shoots of wheat, to protect it from predation from fungus, insects, and animals. In fungus and insects WGA binds to the chitin. Chitin is found in the cell wall and intestinal system of fungi and insects, respectively.  In animals and in humans, it binds strongly to sialic acid on intestinal cells, where it is internalized, and can also agglutinate bacteria and red blood cells. Because it is stable at low pH (i.e. poorly digested) and resistant to gut proteases, it is gaining widespread attention and research to be utilized as a carrier for drug delivery.  Once inside epithelial cells of the digestive tract, it accumulates in lysosomes and resists degradation. It alters intestinal permeability, allowing for the passage of small molecules across the intestinal barrier. In addition, in sufficient concentrations, it stimulates proinflammatory cytokine release as well as affecting the activation of immune cells in the gut, and can cause pancreatic hypertrophy.  It should be mentioned here that lectins are not only found in wheat (but wheat has among the highest lectin concentrations and is the most prevalent plant lectin), and their entrance into the blood stream and implications on systemic health has yet to be widely investigated. For another good review, go here.  How is that for “antimicrobial” theory?

I struggle with anger towards my mom for not figuring out that I was tired after I ate.  Because of food, I was sick and sad for most of my life. If only my mother had known or realized that food could affect how you feel SO MUCH, I know she would have changed my diet at a young age and not let me have dessert at all (or, made a nice paleo alternative).

In contrast, I know I will be the most-hated parent on the block when my child realizes that Oreos exist. But, to me, if I were to allow my child to indulge in sugar, I might as well put vodka in their bottle, and a joint in their hand. Sugar is a drug. It works the same on the brain. And I’m sure little Johnny will sneak away to Billy’s house to eat ice cream on the weekends. But I refuse to allow my children to become addicted to sugar and food in the same way that I was. And they sure as heck won’t be sad, sick, or worse for the pie that I put on their plate. 

 

 

3 Day Fast Experiment

In a previous post, Starving Yourself Awake, I wrote on the eating = asleep phenomenon (i.e. postprandial somnolence) experienced by many people, including those with narcolepsy.

In conducting research for the article, I discovered several key links between orexin activity (orexin expression and orexin receptor expression) and fasting.  A few of the important connections are summarized below:

1) Orexins stimulate arousal and wakefulness.

2) Orexins are found in the hypothalamus as well as the gut, and are up regulated during starvation/fasting, and inhibited during feeding (particularly in response to glucose).

3) Women with anorexia have been demonstrated to have higher levels of circulating orexin, while narcoleptics (with cataplexy) have little to no orexin in their CSF.

In addition to the specific effects of fasting on orexin and orexin receptor expression in the brain, fasting has been demonstrated to be effective in management of other autoimmune diseases, including MS, rheumatoid arthritis, and lupus (SLE). To my knowledge, no one has yet scientifically demonstrated this effect in narcoleptic patients. 

In light of these findings, I am conducting a 3 day fast to determine it’s effects on wakefulness and energy levels. The last time I ate was 9:00 PM 6/17/2012, and I slept 7 hours last night with no memorable sleep disturbances or hypnogogic hallucinations. I will post daily with reports on energy levels and wakefulness, and hope to provide anecdotal evidence to support (or refute) the use of fasting in narcolepsy.
——–UPDATE – 38 hours———

I have now been fasting for 38 hours. So far so good.

I do not have any remarkable changes in mood or energy level, as of yet. Last night I was less sleepy than I normally am upon laying down, but I didn’t have any trouble falling asleep. Only have had 2 short (less than 5 minute) periods of hunger (complete with tummy grumblings), but otherwise have not felt hungry.

I am hoping to see changes in energy levels and beginning about the 48/60 hour mark. My goal is to do a complete 3 day (72 hour) fast, but would be happy to make it to 48 hours. More updates tomorrow!

—–Update 48 hours——

Because I didn’t see any remarkable changes in energy level or alertness, I broke my fast at 48 hours.

I promptly went to sleep, and have been sleepy since breaking my fast.

That said, becomming sleepy after eating doesn’t really account for the fact that I didn’t feel dramatically more awake on the fast, as I had expected. Now, I did have coffee during the fast – maybe that was what kept me from feeling any better than I did?

Most people who fast for autoimmune therapies do a water only fast, and also may fast for up to two weeks! Especially because I was so dramatically tired after breaking my fast, I would like to reattempt the fast, this time for longer and to do a complete water fast.

I also think that a ketogenic diet (i.e. a diet from only fat and protein) may be more beneficial to narcolepsy than by fasting alone. 

In the first place, the benefits of fasting arise from your body’s ability to use fat and protein stores for fuel; carbohydrate metabolism (other than those arising from gluconeogeneis) are not utilized. Secondly, it was recently demonstrated that a diet of amino acids activates orexin producing neurons, and that the excitatory effect of dietary amino acids outweighed the inhibitory effect of glucose.

The best dietary “prescription” to be then would seem to be a gluten-free (benefits covered in other posts), low-carbohydrate ketogenic diet, coupled with bouts of intermittent fasting.

Anyone out there with fasting experience and narcolepsy? Or other low-carbers? What about for the treatment of other autoimmune diseases?

 

Starving yourself awake

One day when I was in college, about my second year, I suddenly realized I felt awake. At the time, I had just been diagnosed with narcolepsy, and hadn’t yet discovered gluten free, so to feel actually awake was mind-blowing. After a few days of thinking about it, I realized I was feeling awake because I wasn’t eating. Not only that, but I found several other people talking about not being able to eat without going to sleep, too.  Apparently it was a common experience for some of us.

There is a good blog article documenting this, as well as comments from many other sufferers at N is for Narcolepsy.  While the author describes the opposite of what I previously stated (eating = asleep vs. no eating = awake), the concept is exactly the same.  There’s something about eating that makes many of us tired. Maybe it has to do with glycemic control, carbohydrate content, insulin spikes, and maybe it is a food intolerance, but the it is clear that the orexin/hypocrein system plays a role in controlling postprandial somnolence.

All of this brings me to these four articles:

  1. Sleepiness after glucose in Narcolepsy,
  2. Widespread Distribution of Orexin in Rat Brain and Its Regulation upon Fasting
  3. Differential distribution and regulation of OX1 and OX2 orexin/hypocretin receptor messenger RNA in the brain upon fasting, and
  4. Plasma levels of leptin and orexin A in the restrictive type of anorexia nervosa.

In the first paper, Sleepiness after glucose in narcolepsy, the authors investigated the anecdotal claim (such as those from N is for Narcolepsy shown above), that narcoleptic patients were more tired after ingesting glucose. In this study, they gave 12 narcoleptics (and 12 controls) an additional 50g of glucose in a punch just before allowing them to take a nap.  Overall, they found that narcoleptic patients who ingested glucose had increased sleepiness and decreased wake duration. Additionally, 11 of 12 demonstrated increased REM. This also corroborates the effect of low-carbohydrate diets on sleepiness in narcolepsy demonstrated by Husain et al. covered elsewhere on Autoimmune Patient.com. So, in response to N is for Narcolepsy, I would say that there is good evidence that eating (especially sugar and carbohydrates) makes us narcos sleepy. 

I’m not going to review the second paper, but allow it to serve as a segway to the third paper (Differential distribution and regulation of OX1 and OX2 orexin/hypocretin receptor messenger RNA in the brain upon fasting). In it, the authors examined expression of the orexin 1 and orexin 2 receptor subtypes (OX1R and OX2R; i.e.  receptors for orexin) in the brain. They looked at where the receptors were, and if they were upregulated in different areas of the brain in response to fasting. It should be noted here that OX1R has a moderate specificity for Orexin A, and OX2R can respond probably equally well to both Orexin A and B. Overall, the found that the different receptors had different distribution patterns, but they had some overlapping areas in their expression as well.  I’ve uploaded a graphic below summarizing where the receptors were found and in which areas of the brain.

The importance of differential expression of orexin receptors in different structures of the brain suggests that they play novel roles in multiple circuits, each of which do different things.

For example, expression of these receptors in the lateral hypothalamic and dosomedial hypothalamic regions implicates orexin involvement in feeding behavior, circadian activity, and body-weight regulation.  

Expression in the hippocampal regions suggest orexins are also involved in regulating the monoaminergic systems (for example, histamines, dopamine, serotonin, melatonin, norepinephrine, epinephine and others).  These systems are of obvious importance, particularly because this is the only region of the brain which produces histamine. Histamine has been shown to be critical for wakefulness, and ablation of histamine in the CNS results in hypersomnolence, sleep fragmentation, and increased REM. Additionally, low levels of histamine are found in the CSF of narcoleptics, and is also reduced in animal models.

Additionally, expression of these receptors in the amygdala implicates partial orexin-regulation of memory, attention and emotion. 

In addition to the receptors, orexin itself has also been shown to be upregulated during fasting (and, interestingly, also by insulin-induced hypoglycemia).  

In another interesting study that investigated circulating orexinA levels in recovering anorexic women, found that as anorexic women who began a recovery program and gained weight (as shown by an increase in BMI and leptin levels), their circulating levels of orexin decreased significantly at every time point during the course study.

So what does this all mean? In the first place, it means that the sleepiness exhibited by narcoleptics after eating is real. For some, this may mean that not eating all day, in order to maintain wakefulness.  While certainly this doesn’t seem optimally healthy, it may be a legitimate alternative method to controlling daytime sleepiness for some, particularly in younger patients who may still have functioning hypocretin neurons that have not yet been destroyed by autoimmune attack.  In the second place, it means that dietary restriction can modulate expression of orexin/hypocretin and their receptors in the brain (and speculatively in the gut and pancreas as well).

While it is certain that more literature on the gut/brain axis and the role of the enteric nervous system in narcolepsy is sure to come, it is an exciting time to theorize major players of the disease that may extend beyond the hypothalamus, which may also pave the way for novel treatments or palliative care.

 

 

Diet Therapy For Narcolepsy

In 2004, Dr. A. M. Husain published an article in Neurology called “Diet Therapy for Narcolepsy.”  Dr. Husain conducted a study on the effects of a low-carbohydrate ketogenic diet (LCKD) on people with narcolepsy.  Basically, he put a few patients on the Atkins Diet, and asked: “Were they less sleepy?” Over the course of just 2 months, the patients that were able to adhere to the diet noted a significant reduction in their total sleepiness (assessed by a Narcolepsy Symptom Status Questionaire).  Overall, patients reported an 18% reduction in daytime sleepiness.   

So why is this paper interesting?

1. It demonstrates that diet can affect how tired you are.

Food affects how you feel.  Particularly, specific foods may make you more tired, especially if there is an underlying intolerance to a specific food group. By eliminating self-identified foods that seem to make you more tired, it is possible to manage the symptoms of narcolepsy, at least in part, through diet modification.

2. It also points to a group of foods that may be causing the sleepiness in the first place! 

Low-carbohydrate ketogenic diets (LCKD), such as the Atkins and more recently popular Paleo diets, restrict carbohydrates which usually come from grains.  Of these, wheat is the most common source of carbohydrate in the American/Western diet.  By going on a low-carb diet, you are in part severely limiting grain and wheat flour consumption.