Tuesday, June 5, 2018

Ketogenic Diets and Lipedema: Apply Caution

Sculpture by Madeleine-Marie Gautier
Be smart; do your research before jumping on the ketogenic bandwagon
One of the biggest trends in lipedema treatment world right now is the ketogenic diet. Folks in lipedema communities are all a-flutter over it, considering it practically a cure. There are tons of sessions about ketogenic diets at the lipedema conferences and it's being heavily promoted on lipedema websites and support groups.

I have decidedly mixed feelings about this. On the one hand, I'm a big believer in people being in charge of their own healthcare, and if this is something they want to try, it's okay with me. It's good to consider different therapeutic modalities. On the other hand, it bothers me to see people promoting it so strongly online, as if it is a proven therapy, as if it is a cure. It's NOT.

In fact, we have little actual evidence about ketogenic diets for lipedema, mostly just the word of a few doctors and therapists who believe it is "the answer." We have the stories of some people who are in the honeymoon phase of weight loss on the diet. We have no long-term evidence that it helps lipedema.

What is a Ketogenic Diet?

A ketogenic diet is a dietary approach that promotes a high fat intake and a moderate protein intake, while keeping carbohydrate intake to a bare minimum (no more than 50g per day). In other words, you can have plenty of meats, fats, and low-carb vegetables, but grains, fruits, and higher-carb veggies are not allowed. You can have lots of bacon, steak, and nuts but no rice, bread, pasta, peas, corn, apples, grapes, pears, or bananas, etc.

It's a nutritional plan designed to trigger ketosis in your body. Your body uses glucose for energy, which is largely created from the carbs you eat and then stored as glycogen. If you eliminate carbs from your diet, your body uses up its stores of glycogen, runs out of energy, and needs to find a replacement. So it turns to its stores of body fat and starts consuming them. The by-product of this process is ketones.

Ketosis (ketones in your system) results from the burning of fat for energy when the intake of other energy (carbohydrates) is too low to supply the body's needs. To see if you are spilling ketones in your urine, you can buy testing strips from most pharmacies. You pee on them and they will tell you if you are in ketosis and if so, how much. The aim of the diet is to get you into major ketosis territory so your body will hopefully burn up the lipedemic fat.

Ketogenic diets do very well at producing a quick and very strong initial weight loss. Much of it is water weight but muscle and fat is also burned, leading to more weight loss, at least for a while. Some people report feeling marvelous on it, while others report feeling terrible (the "keto flu"). Sometimes this effect is temporary (the first few weeks) and sometimes it never resolves.

Reservations About Ketogenic Diets

When looked at historically, it can be seen that dietary approaches rotate in popularity. Vegetarian, vegan, alkaline, low-fat, low-carb, no grain, no carb, Paleo, eating "clean" ─ all are dieting/weight loss trends that have cycled in and out of popularity over the years. None show any better long-term results than the others.

If you lower calories, your body will initially lose weight for a while, and then it will slowly adapt its metabolism to the new lower intake and the weight loss slows down and stops, then starts reversing. Sometimes you can overcome these plateaus for a while but nearly always the weight eventually returns, often with friends. There are a few people who manage to sustain large weight losses over many years, but they are statistical outliers, and many do it at the price of eating-disordered behaviors around caloric intake and exercise.

Remember that there is NO research proving improvement of lipedema with a ketogenic diet. Nor is there any research proving long-term permanent weight loss with ketogenic diets. The current push for ketogenic diets is the lipedema and medical community pretending to be size-friendly and pro-health but still exhibiting an underlying diet and weight loss mentality. The paradigm is just too ingrained in them to let it go:

  • Sure, we know that lipedema is really not your fault ─ but don't you dare let up on your relentless focus on dieting and exercise or you'll blow up like a balloon! 
  • Sure, it's not just a matter of restricting calories ─ but you really should restrict certain toxic foods. If you don't, you'll make your lipedema worse and you'll end up in a wheelchair!

Caregivers and far too many patients are still stuck in the same old guilt/shame/scare/restrict dieting mode, even if they no longer call it a diet. They may call it a "lifestyle change" but it really is just another diet. 

For a while it was an anti-inflammatory diet that was supposed to lessen the effect of lipedema. Now that has started to go out of fashion and it's all about the ketogenic diet. Pretty soon the ketogenic diet will go out of fashion too and something new will be "the" fix. But whatever the latest trendy approach, it's all still dieting, bottom line.

That's not to say that you should just "let yourself go." There's nothing wrong with focusing on healthy habits and nutrient-dense foods. No one is saying that people with lipedema should pay no attention to their health. You don't want to exacerbate the lipedema. But we do need to be cautious not to let that care become part of the Diet Fixation that is so prevalent in our society.

Be especially leery of nutritional approaches that take out entire food groups, that are highly restrictive in intake, that cast foods into "good" and "bad" categories. Foods aren't moral or immoral; they have no value judgment. Some are healthier for you than others, some work better with your particular body than others, but everyone is an individual. Sweeping dietary restrictions don't generally work very well for groups. Moderation and variety seems to be the best keys.

Remember the profit motive of this latest trendy diet. Although the "keto experts" are well-meaning, the patient often ends up paying hefty amounts for advice. And the so-called experts usually spin their approach into a whole cottage industry that makes them all kinds of money. Keto lifestyle coaches abound online these days and have many "packages" available for lifestyle advice. All of it is for a profit. It colors everything they say. Even caregivers who consider themselves neutral often have financial interests in the weight loss industry that influence their views. View everything with a giant grain of salt.

Look beyond the salesmanship, the scare tactics, and the short-term personal testimonials. Ask what real evidence we have on ketogenic diets. Keep asking about this on lipedema groups promoting ketogenic diets and listen to the deafening silence or culture of denial. It's very revealing.

What Does the Research Say?

Bottom line, there does not seem to be any studies on ketogenic diets and lipedema. 

All the claims online about how effective ketogenic diets are for lipedema seem to come from anecdotal stories. A few isolated case reports exist, which are essentially anecdotal evidence too. Although we should not dismiss anecdotal evidence out of hand, neither should we consider such a therapy proven. It's not proven at all.

The ketogenic diet does have some uses in fields other than lipedema. It's important not to dismiss it completely. It was first used in 1920 to help people with epilepsy. It has been shown to be extremely helpful in children and adults who experience chronic severe seizures ─ but perhaps at a price. There seems to be some cognitive decline in young children on a ketogenic diet, but whether that's worsened because of the repeated seizures or whether a combination of repeated seizures and a ketogenic diet makes things worse is unknown.

The ketogenic diet has also been shown in some limited research to be helpful against certain types of brain tumors (glioblastoma). It's not a cure, but it may help at least delay progression. However, although there is lots of speculation and pressure for its use with other cancers, there is no conclusive proof of its utility on other cancers at this time.

A low-to-moderate carbohydrate diet has been shown to improve certain cardiac risk factors in newly diagnosed diabetics, but follow-up is generally only about a year, not long enough to judge its long-term usefulness. Still, it may well lower insulin levels long-term, so that is potentially a benefit to some.

However, while ketogenic diets typically improve triglycerides, HDL cholesterol, and blood sugar temporarily, some data suggests they may worsen LDL cholesterol. Whether that is truly risky or not is unclear.

Furthermore, many people report significant G.I. issues like nausea, vomiting, and constipation with a ketogenic diet. Other potential risks may include kidney stones or other kidney problems, electrolyte imbalances, dehydration, vitamin deficiencies, muscle loss, leg cramps, and decreased bone density. Bad breath, fatigue, and sleep problems have also been reported. While a ketogenic diet is probably not super-risky, neither is it without harm in the literature. Many dieticians recommend against it.

Ketogenic diets get good buzz because there are often significant drops in weight in the first few weeks of the diet. This is largely due to fluid loss, not fat loss. Since women with lipedema often retain serious fluid in their bodies, they can experience really big drops in weight ─ at first. But will it last? As two dietitians note in an article on the keto diet:
"As you limit carbohydrates, your body produces less insulin, and glycogen stores (how carbs are stored) in the muscles and liver are depleted. For every 1 gram of glycogen that's depleted, you lose about 3 grams of water." This causes the kidneys to flush out more water, and along with it, electrolytes your body needs like magnesium, calcium, sodium, and potassium. "Imbalanced electrolytes can lead to muscle cramps, irregular heartbeat, fatigue, cognitive distortions, and lack of body temperature control," Turoff says...
"I wish people knew that the weight loss they will initially experience on this diet is largely due to water loss," Brown says. That means you're most likely not actually losing fat in the first couple of weeks, but instead losing water that will come back in the form of glycogen stores if and when you start eating carbs again.
As far as weight loss goes, a meta-analysis of a number of studies found that ketogenic diets resulted in greater weight loss than low-fat diets ─ but a review of this meta-analysis noted that the difference was only about 1 kg (2.2 pounds), and once the participants reached the 24 month mark, any significant difference between groups disappeared. Not exactly impressive results.

This is typical of nearly all weight loss research. There is an initial period of significant weight loss, lasting anywhere from a few months to around 1-2 years, and then the weight is slowly regained. Often the person regains to a higher weight than their starting weight. The question becomes whether people are better off for having lost the weight and regained it, or if they would have been better off being stable at a higher weight.

Reviews note over and over that a ketogenic diet is generally quite difficult to sustain long-term. Many "long-term" ketogenic studies actually only last 6 months to a year. Drop-out rates are extremely high because it is such a hard diet to follow, and this makes it difficult to interpret what data there is.


One of the trendiest things in lipedema care these days is the ketogenic diet. It is routinely being promoted as a "must try" fix. Physically, it rewards participants with a large quick weight loss, and emotionally, it gives a feeling of control over the uncontrollable. People are glad to at least be doing something in hopes that it will help. It's understandable that it's so appealing to many and has caught on so quickly. But the reality is that it's just another unproven diet fad, cycling around for another turn on the Diet Wheel of Frustration.

That's not to say that the ketogenic diet is never useful. Clearly, it has been very useful in those with serious seizure disorders. But for lipedema? That is completely unproven at this point.

But I'm not going to tell you to not do this diet. You control your own body and your own healthcare decisions. I'm not the Diet Mafia. If you want to do the ketogenic diet, go right ahead. My advice if you try it is to avoid extremism, consult a dietitian so you do it more wisely, take supplements, drink lots of water, and stay flexible. Give it your best shot but don't feel bad if you find it difficult to sustain this diet or if you don't get the long-term results you were hoping for. Lots of other people have had similar issues.

Many people try the ketogenic diet for a while, lose fairly significant amounts of weight pretty quickly, sometimes even from the legs ─ then find the weight comes back no matter what they do. Or they simply cannot live with the extremes of the diet and stop following it after a while because it is so difficult to sustain long-term.

That was pretty much my experience with the ketogenic diet, years ago as a young adult when I was still riding the diet merry-go-round. I lost 50 lbs. on it in six months, but in the end began gaining weight uncontrollably even while still on the diet. Eventually I found it to be simply unsustainable and stopped. I found that after my ketogenic diet, I actually had more lipedemic fat (though I didn't know what to call it then) than when I started, particularly around my belly. That really turned me off of it. It had good initial results but they didn't last any better than any other diet or "lifestyle change" I did. In fact, it made things worse in the long run.

That was my last really big diet. After that, I turned to the Health At Every Size approach and stopped yo-yo dieting. I found I was so much healthier in my food choices, my lab numbers improved, my weight stabilized, and I just FELT so much better, both physically and emotionally. I tried to emphasize more exercise and eat moderately but didn't guilt myself too much about it. Everything in moderation ─ including moderation ─ became my motto.

Some people swear by the ketogenic diet, and if it works long-term for you, more power to you. But stop promoting it as if it has been proven to be a cure for lipedema. It hasn't. It hasn't been shown to result in long-term weight loss either. You can mention to others that you are trying it, you can talk about the pluses and minuses, you can share your experience with it, but please refrain from making unproven claims and stop pressuring other people to try it.


Mich said...

Thank you so much for writing about this. I belong to several of the lipedema groups on fb, and they all harp about keto, and on the side for "recommended groups" are more keto groups (in general and for lipedema). I find I enjoy pasta, bread for sandwiches (except gf breads and flours are very expensive), a variety. Just not worrying about the weight has taken the drag off.

Brenda said...

There has been one published study by a professor of Occupational Therapy in the US that shows lymphedema improvement with KD. Since there is often an overlap with lipedema this has been the basis for using the diet with lipedema. There are lips ladies who have achieved normal weight and normal shape who have been on KD for two years.

Well-Rounded Mama said...

Thank you for sharing that. The study on keto for lymphedema doesn't mean that much because although there are similarities, lipedema and lymphedema are NOT the same. The anecdotal stories don't mean much either. I've heard similar things about other diets. While I respect people's experiences, I won't take KD seriously until there's good research that shows long-term results.