At the first of 2013, I was an invalid in my office chair. It hurt to move. It hurt to be still. Everything just hurt with a screaming, burning pain. I felt sure that this was my death and so I began the finals – financials, directives, genealogy, passwords, and letters. One of the things I wanted to do was have the fat pads removed from the girls’ inner knees. I began doing the research and found that someone had typed one odd word on a comment board: lipedema. Even in my pain-filled world, curiosity won. I was off on a Google adventure. It didn’t take long to find out about renegade fat cells, inflammation, canklets, and pictures … lots of pictures that looked like me. In addition, that most heinous group of words kept cropping up: incurable, genetic and progressive.
Hope struck in the strangest way that morning. By researching further, I found the Dercum’s video and the lactic acid leakage explanation. Lactic acid? I knew all about the stuff that ended my running dreams. I had no ability to run distance or sprint without that burning foul, fermenting glucose filling my legs. Was that problem the same as this problem? Realizing that this terrible pain could be lactic acid, a ghostly memory flooded my mind of a woman telling me about this amazing diet that had “cured” her daughter’s epileptic uncontrolled seizures. In a huge moment of revolt from modern and sane medical advice, my next Google adventure began with the word: ketone.
I am not a doctor or have anything to do with the medical profession in even a small way. In fact, until that morning in January there was always one clear item in my educational passage … I hate science. Of all the time spent researching and studying subjects over the years, none were anything related to science or medicine unless forced to do so. It is not that I can’t get good grades or understand the facts/figures of the math and science. I just hate science with medicine running a close second. Now I find myself deep in medical research from around the world studying mouse models, learning the lingo and well, actually, hating science but I continue to read and learn.
Going Keto
Jack Sprat could eat no fat… His wife could eat no lean…
In the ancient past, our ancestors had poor hunting/gathering years, iced over continents, extra-long winters, belching volcanoes, and great migrations. Enduring these difficulties took more than a carb diet-hypothesis. Studied by George F. Cahill, Jr. in his career at Harvard, starvation pathway provides a pathway to survival (PDF). In response to starvation, ketone bodies insured our far distant ancestors’ survival. In our modern times, keto-adapted living provides many benefits to endurance athletes, medical patients, and people with special dietary needs.
Glucose-burner or ketone-burner
A glucose burning body covers all diets from high carb to low carb, which includes the high protein diet and omnivore diet. As a glucose burner the liver, kidneys, and pancreas act to create glucose, burn glucose, balance blood glucose, and store glucose/glycogen. A high-protein, sometimes called a low-carb, diet is a glucose-burner as the pathway, gluconeogenesis (GNG), changes protein to glucose. For a carb burner, the traditional diet consists of vegetables/grains, low fats (monounsaturated), and moderate to low protein along with lower sodium.
In the ketogenic diet, organs have different jobs. The liver produces ketone bodies instead of full-time glycogen/glucose. The kidneys, using gluconeogenesis, create glucose for the brain. The pancreas is up regulating its lipid breakdown enzymes and sparing its insulin. Much of the brain, the heart, and the muscles all now burn the ketones for energy production. For a fat-burner, the diet consists of quality fats (including saturated), adequate protein, and low carbs with much more sodium needed than in a glucose-burning diet.
Keto-adaption vs Ketoacidosis
Every diet must lower something creating an energy gap in order to make the body use its fat stores as fuel. Thus, every diet creates ketone bodies at some level as a by-product of fat burning. In keto-adaptation, the body trains over a period of WEEKS not hours to breaking down saturated fats, burn fats and control adequate storage of fats. Ketoacidosis, when the ketone level and blood glucose level are beyond normal parameters, is a state of imminent danger. Without a functioning pancreas, the production of ketones in the liver is like a nuclear chain reaction with the ketones building up in the blood stream doing incredible damage and ultimate death.
My Research
Phinney and Volek (video), (book); Peter Attia (video, video, blog); Freeman (book); along with bloggers McDonald, Sisson and Jaminet were my important resources. When I had the concept understood that I could eat more fat, and I believed that cholesterol would not kill me, I moved to the actual implementation by calculation.
Calculating my risks
The risk factors I found for not doing well on a keto-living style were weight loss surgery, brittle Type 2 Diabetes, celiac disease, eating disorders, confirmed heart disease, inability to digest fats or fatty acids, being a child/teenager, various chronic stomach illnesses, and probably others that I did not find. As I was clear on the ones I found, I moved into the math.
Calculating my Lean Body Mass (LBM)
Short of having an X-ray, MRI, CT or DXA scan of my lean body mass, the next best seemed to be the Covert Bailey formula (website). This formula measures areas not prone to lipedemic distortion along with the lipedemic-distorted areas. On the lipedemic distorted areas, I pulled the tape as tight as I could stand it in order to get as close to the muscle measurement as possible. For me, the formula calculates a 155-pound core body, which was the size of my body before the lipedemic distortion.
Calculating my ideal weight
I needed to add my healthy adipose (HA) in weight to my LBM. “Healthy adipose” is not an oxymoronic phrase, strange alien term, or fodder for comedians. A healthy adipose system is a key to having a good immune system, good skin, continuous energy, long endurance, correct hormones, wonderful lungs, functioning brain, and good general health. How much “fat” is correct? Women need 21% – 36% (website), with men’s numbers being lower. I am targeting the 36% mark because of my age and body shape. My formula looks like: 155 *times* 1.36 for ~210 pounds of healthy mass/weight. This is my ideal weight but it does not meet the approval of the AMA.
Calculating my body composition
As a point of fact, I will always weigh more than anyone’s ideal amount because I have lipedemic distortion/accumulation of—I am guessing low—around 20 lbs. Adding that into the mix, 210 + 20 makes me need 230 pounds.
I vowed to never sacrifice the actual amount of LBM and healthy adipose tissue I NEED for health to the inflammation/lymphedema/ lipedema weight I carry in order to make the scales in the doctor’s office look good. When I make this sacrifice, I am robbing my health and future.
But, is it fat?
If is it not burring away with diet and exercise, logic says probably not. Lipedema is lipo (fat) and edema (swelling). Fat: no one knows why it is strange and seeming stuck in storage mode so I had to ignore that—for now. Swelling: we know a lot about that and between inflammations from food allergies, toxins, other adipose tissue, lymphedema, and generic edema there are many points to attack. I chose to fight the inflammation and it was time to put the eating action plan together.
Calculating my protein
How much protein one should have in a day is a hotly debated subject. The truism of 25 grams per day is true and adequate for living – but barely. I follow Dr. Rosedale’s formula and picked low (.5) because of my age and known cancers in my family history. 155*.5 = 77 so I aim for between 75 and 100 g of protein each day from various sources to capture as many amino acids as possible.
Choosing my carbohydrate amount
Carbs are not essential but are nutrient rich. Primal Blueprint has the chart that most low-carbers follow; however, Volek and Phinney have re-introduced the concept of “Carbohydrate Intolerance”. Everyone probably has a personal set point where below that amount of carbs we can keto-adapt and above that amount we cannot keto-adapt. Physical clues are a large belly, general obesity, and other signs of metabolic challenge. Another factor to consider is high triglycerides with low HDL (paper). My choice was to eat a VERY low carb intake of zero carbs with the top end being around 30 carbs daily, which necessitated a good vitamin supplement plan. While I get my glucose from protein through gluconeogenesis (GNG), low glycemic veggies are an excellent choice as well as carriers of need micronutrients.
Calculating my fat intake
How much fat? Answer: The protein grams I selected + the carbohydrate amount I selected will be found in X amount of calories. Calculate: Protein*4 = kCal-p and glucose*4 = kCal-c. Add those totals together. ALL other calories need to come from fat—either dietary or stored—in a range above 60% of total intake. NOTE: Once I keto-adapted, calories are not important. Do zero math.
EH?
Instead of counting, I shift percentages of the macronutrients—carbs, fat, protein—to my needs.
• If I want to lose healthy, burnable lipid from the adipose tissue (lipedemic tissue is not burnable yet) I eat the same carbs, the same protein, and less fat. By creating this gap in the fuel system, the body will need to cannibalize its lipids in the adipose tissue because as keto-adapted system it will not want look for glucose.
• If I am at a good realistic-weight and only have that lipedemic fat hanging around, I need to eat the amount of fat to keep cannibalization from happening by making NO gaps in the fat consumption. Mostly, especially with lipedema, if the brain cannot see it has fat it will move on to muscles and that is never good. How would I know if the muscle was being burnt and I needed to eat more fat? One very wise person said my feet would smell of tomcat urine. I agree.
• If I need to gain muscle, I need exercise and an increase in protein in the ratio of 1 gram for every 1 pound.
• If I need to gain fat mass, I probably need to switch out to carb storage again by eating carbs to raise my insulin.
Keeping track over time
Once I had my totals for macronutrients, I used a multipage Excel spreadsheet system but apps like My Fitness Pal would work just fine without the headaches.
Keto-adaption
My basic training time to adapt was 8-ish weeks and I remained strict with my diet. The Keto-flu is a long dragging feeling as the body goes from being on this sugar rush to its more natural state. I keep a basic ratio of 2:1. An easy way to do this is add the protein grams to the carb grams. On a 1:1 ratio I would eat that many fat grams. On a 2:1, I need to multiply by 2. For a 3:1, multiply by 3 and so forth. Phinney likes to say when in doubt, eat more fat. My go-to for most deficits is good grass-fed organic butter, cultured grass-fed butter, homemade ghee, or MCT (coconut) oil. Absolute measures were not necessary I gained a new appreciation of how my body handles energy balance.
So what do I eat?
I tweaked Peter Attia’s eating plan for my tastes (here). I enhanced low-carb recipes by adding fat to keep the 2:1 ratio going. I reworked some of my favorites to create new comfort foods.
Other food tricks
Fat is a toxin holder—remember to find as many clean, chemical-free, hormone-free sources as possible. Eating out generally consists of eating before we leave and then just enjoying a coffee and chatting while we are out. Vacation was tricky but grocery stores became my fast food stops. When I get in a situation of carbs for miles and miles, I wait until I will get home to refill the fatty acid and the protein pools because hunger and eating every 2 hours no longer drives me.
Results!
One year ago, I was 335 pounds and now 255 leaving 25 pounds to resolve before I am at the 230 pound goal. Most of those pounds were inflammation. The rate of “weight” loss did not match my activity level. At times, I would have had to be at a 200% positive metabolic rate—just no way. Pain: the burning pain of fermentation is gone. Attitude about myself: I no longer try to destroy the healthy adipose tissue but am constantly building it up. The healthier it gets, the healthier I get.
The Future
A.) I will be testing cholesterol on a higher level using either VAP or NMR profile. B.) DXA scan. C.) Heart health screening. D.) Relaxation and meditation focuses for cortisol reduction. E.) Maybe an exercise program.
This not written for DIY parent to feed a child for either epilepsy or obesity. Children are very precious and they do not deserve any DIY fixes for their beautiful unfinished lives. Children can be lost to death very quickly eating this way through improper hydration, micro-nutrition deficiency or wasting. Get them real professional help.
Is it THE diet that cures lipedema? Probably, no. Until we get more people in the medical community looking at all of us - men and women - with that critical research eye, we can't be sure what we need to attack which makes me cautious about the word:cure.
ReplyDeleteCan everyone do this lifestyle? Probably, no. Your health and your health goals should always come before my opinion.
Great article. A lot to digest. I have been doing this and kind of just winging it. Thanks for all the resources so I can educate myself better about this. I have heard recently that if you eat to much fat your body will use what you eat first and not go looking for the stored adipose. Im wondering if this is where excercise might come in to play.
ReplyDeleteOh Darlene, if we could put you in a bottle and dispense you. I was in the choir, shaking my head yes today. One thing you did here for me was put words to my altered expectations. When I am on low-carb, the weight flies off, and then I stop, and then I have one more great loss, and then I hit the magic 204. In my mind, I have 40 pounds to go bit now I realize I was at my ideal weight. POW! Thank you!
ReplyDeleteThe question came up as to why I decided on 1.36. Since I was looking for an ideal weight for me, I did a value added method (like adding taxes to purchases) IF you have an ideal weight in your mind, you would do the opposite and take the ideal weight a divide it into what body composition you would like it to be according to your goal weight and personal health outcomes. Example: 200 pounds and you wish to be 25% adipose (fat). 200 pounds divides into 150 pounds LBM and 50 pounds adipose. Note: the BMI number tells you about a weight to height ratio. It does not tell you the composition of the weight.
ReplyDeleteThe theory in a fat-burning body is that by raising and lowering only the fat intake you would lose or gain weight. Personally, I think it is a bit more complicated than that because everyone's body is unique.
ReplyDeleteEdit - again: Under Calculating my protein, it needs to read ...
ReplyDeleteHow much protein one should have in a day is a hotly debated subject. The truism of 25 grams per day is true and adequate for living – but barely. I follow Dr. Rosedale’s formula.
On the longer 5000 word version, I compared my Keto totals to my husbands low carb protein totals. When we were editing it down, we missed the scramble of words. Here is MY calculation: 235 ideal weight calculates to around 95 grams of protein. 155 pounds of LBM calculates to around 63 grams of protein. Therefore, my range is between 63 and 95 grams of protein. I am not exercising to build muscle and have a family riddled with cancer. I have chosen to drop to the lower side of my range or some days slightly under the range. I know it sounds like a small amount but that could be the difference of staying in keto or going to the low-carb side.
Thanks for sharing your thoughts on called bad fats.
ReplyDeleteRegards
I am very happy to read this. This is the kind of manual that needs to be given and not the random misinformation that
ReplyDeleteis at the other blogs. Appreciate your sharing this best doc.
Excellent post however I was wondering if you could write
ReplyDeletea litte more on this subject? I'd be very
grateful if you could elaborate a little bit further.
Bless you!