What is Lipedema?
Although many haven’t heard of lipedema, it’s by no means a rare disease. Lipedema is a disorder impacting both fat and the lymphatic system (which removes excess fluid from the tissues), and almost exclusively occurs in women. There’s currently no concrete number of women affected by lipedema, as it’s often misdiagnosed as simple obesity. However, some estimates suggest as many as 1 in 9 women have the condition.
Poorly managed lipedema is chronic and progressive, and the effect of the disorder is multifold. Someone with lipedema may experience fat that is typically disproportionately gained on the lower body -such as the hips, buttocks, thighs, and calves – which is often tender and painful, especially when pressure is applied, as well as easy bruising in body areas affected by lipedema.
Once this “lipedemic” fat is gained, it can then become scarred. This results in nodules which causes a distinct grainy, or lumpy texture in the fat. Lipedema fat is also characteristically very difficult to lose from typical weight loss methods like calorie restriction and bariatric surgery, even if fat in other areas (like the torso) is lost easily.
The Difference Between Lipedema and Lymphedema
Because lipedema can cause swelling of the legs, it may also be misdiagnosed as a condition called lymphedema, a disorder that causes the lymphatic system to struggle with the removal of fluid from the tissues, causing swelling. This confusion can be exacerbated by the fact that lymphedema can also occur in the legs of those with more advanced cases of lipedema (called lipolymphedema). Although one can be mistaken for another, lymphedema is a separate disorder that primarily results from improper growth or damage to lymphatic nodes or vessels.
The two conditions can be differentiated by looking at how they affect the body. Lymphedema, for example, often affects only one limb, or if in both legs may affect one more than the other. If only lipedema is present, however, it occurs on both sides of the body and is symmetrical. Lipedema also causes painful fat and easy bruising in the affected areas, whereas lymphedema does not. Additionally, lymphedema causes pitting edema – meaning when a swollen area is pressed into it leaves a lasting dent, and if present in the legs, it may not be possible to pinch the skin on top of the feet (called a positive Stemmer sign). Lipedema alone, however, causes non-pitting edema – no dent is left when pressing into a swollen area because it immediately refills with fluid, and the Stemmer sign is negative as the feet are not affected.
Unfortunately, women with lipedema, if not properly diagnosed, may receive inappropriate or inadequate treatment. They may just be told that large legs run in their family, that they are not trying hard enough to lose weight, or that the pain they experience – such as when a pet or child sits in their lap – is imagined. These often-debilitating symptoms of lipedema, combined with a lack of support and understanding from those around them, potentially including their own doctor, may lead to anxiety, depression, or even eating disorders when typical methods do not reduce the lipedema-related fat. This makes the accurate diagnosis of lipedema all the more important, especially in the early stages.
What Causes Lipedema?
Currently, the causes of lipedema are unknown. However, an underlying genetic cause is suspected due to lipedema often being found in multiple family members, although no “lipedema gene” has yet been identified. Additionally, it is speculated that there is a sex hormone component to lipedema, due to it nearly exclusively occurring in women and because symptoms often first occur during hormonal changes – puberty, pregnancy, and menopause. Some researchers also theorize that lipedema may be a connective tissue disorder, due to multiple abnormalities in connective tissue being observed in those with lipedema.
Treatment Options for Lipedema
Although there is currently no cure for lipedema, there are treatment options to help address the symptoms, improve quality of life, and slow progression. Because lipedema results in swelling, strategies to reduce the amount of fluid in the legs can be beneficial. This can include the use of specialized compression garments (like compression stockings) or pneumatic pumps, lymphatic massage, and regular exercise or activity to help push fluid out of the tissues. Liposuction to reduce the amount of fatty tissue or lipedemic fat, or lipedema reduction surgery to manually remove the lipedema nodules, can also be implemented to help with mobility and body image. Other strategies can include a supportive community and psychological interventions to help those with lipedema manage living with a chronic condition, deal with anti-fat bias, or other difficulties that may come with having the condition.
Recently, a ketogenic diet has emerged as an exciting new treatment option for lipedema. Initial research and many anecdotes suggest the potential for significant benefit of ketogenic nutrition for those with the condition. When used in conjunction with existing treatment options, ketogenic diets may provide a significant step up in lipedema care beyond what has been available previously.
How Does the Ketogenic Diet Help Lipedema?
Traditionally, it was believed that “diets don’t work” for lipedema, based on limited positive outcomes from bariatric surgery, calorie-restricted diets, and even starvation in those with lipedema. The typical outcome of these extreme approaches would be meager fat loss from areas impacted by lipedema, even if fat was lost from the upper body and face. This would only serve to accentuate the body disproportion and cause the intervention to be abandoned.
However, emerging research suggests that ketogenic diets may be helpful for those with lipedema – not only resulting in weight loss in some who haven’t found success with other methods, but also notably reducing other lipedema symptoms. For example, a recent case study discussed the results of nearly two years of a ketogenic diet in a 32-year-old woman with lipedema. She not only lost 90 pounds – she also saw improvements in blood markers, experienced less lipedema-related pain, and saw improvements in her quality of life. In other words, this woman found a ketogenic diet profoundly beneficial for managing symptoms of lipedema.
A pilot study examining the impact of ketogenic diets on women with lipedema found similar results. Like the case study, participants lost weight, experienced less pain, and improved their quality of life. Interestingly, after the ketogenic phase of the experiment, participants were put back on a higher carb diet. Although they didn’t regain the weight they had lost, their pain did return to pre-keto levels within a few weeks. This result suggests that the pain relief from a ketogenic diet may not have been due to weight loss in itself.
Although more research needs to be done with larger groups of women, these initial results, combined with numerous anecdotes, suggest ketogenic diets may be uniquely beneficial for those with lipedema as part of a well-rounded treatment plan. However, this does open a question as to why ketogenic diets may be helpful if the positive results are not just a result of weight loss alone.
One paper exploring why ketogenic diets may be useful for lipedema suggested several potential reasons. One reason given was that ketogenic diets have been shown to be an effective tool for weight loss in those who are overweight or obese, which may be useful for managing the progression of lipedema as well. It was also suggested that pain reduction may be due to a decreased level of inflammation in the body when eating ketogenically. This is supported by reductions in both pain and inflammation noted in a study of the effect of a ketogenic diet on chronic pain. Alongside these and other reasons, it was suggested that keto may help reduce swelling as has been seen in those with lymphedema.
It is also possible that some benefits of a ketogenic diet for those with lipedema may be directly caused by the ketones produced by the diet. One such benefit may be related to signs of oxygen being at unhealthy low levels in lipedemic fat, a problem called tissue hypoxia. Hypoxia can cause damage and contribute to the scarring of the fat. Because ketones have been found to be protective against damage caused by hypoxia in other situations, they may be beneficial for lipedema-related hypoxia as well. Beyond possibly providing some protection from hypoxia, research in mice has also found that ketones encourage the growth of lymphatic vessels. Because one function of the lymphatic system is to move fluid out of tissues, lymphatic vessel proliferation may directly help to reduce inflammation. If these effects also occur in humans, they may contribute to the reduction in swelling and pain seen in those with lipedema who follow a ketogenic diet.
What Women are Saying About Using Keto to Manage Lipedema
There are over 14,000 women with lipedema in the Keto Lifestyle for Lipedema Facebook group and the numerous virtual courses offered by the Lipedema Project και Lipedema Simplified. From these women, anecdotal reports of how a ketogenic eating plan favorably manages lipedema symptoms abound. Here are some of their comments:
“I’ve lost 74 pounds since I began last March and feel better at 40 than I have in my entire life. I’ve got more energy, and no aches or pains. I’m thankful every day that I found Keto.”
“I just took the Keto [for lipedema] course… I had a doctor’s appointment last Wednesday. And he said that I could start walking around the house without my walker or without my cane. You know, it’s one I’ve been working towards for so long that I thought I’d never be able to walk again. And here I am, I’m walking. I mean, it’s, it’s indescribable how incredible it is.”
“I’m sitting in economy class seating…wearing Levi’s jeans that I bought and never wore (purchased years ago!)….[the] KETO [Way of Eating] is the only way. I did not fit in economy on American Airlines two years ago–had to switch seats….down 21 pounds [in 8 ½ weeks]. I am sooo happy, I could cry.”
“I’m 1 month in today and down 20 lbs. But more importantly, I feel great, [I] have stopped completely my opiate painkillers, no random stomach aches which I used to get lots of, no headaches or migraine[s] which I also had frequently. My leg pain is much better, I don’t feel so stiff, and I have a clear head. Why didn’t I do this sooner!”
“I brought my sister in on the whole effort as well. And we have had so many wonderful successes… We’ve probably cumulatively lost about 60 pounds. Inflammation is wonderful. I mean, [it’s] way down… and the ability to move around — I can cut my own toenails! — and just to be able to be able to walk and to have the energy to do more things has been wonderful.”
“Let me start by saying just a few months ago I thought I was about 2 shakes from being in a wheelchair due [to] lipedema… but because of this way of eating this was my day. I swam for an hour this morning, went to Home Depot, and was in there for about 2 1/2 hours on my feet, and I have been painting the rest of the day… taking a small break, but have more to do. I can’t believe I have been able to do all of this!!”
A Word of Caution
There are certain relatively rare medical conditions, such as a deficiency in enzymes needed for using fat for energy, that would make it dangerous to eat ketogenically for lipedema patients. (See this resource for a list of conditions). Most of these conditions are identified in childhood, but consult with your healthcare provider.
Someone with lipedema may also have other conditions which may benefit from a ketogenic diet, but which require additional medical supervision. It is recommended that individuals be closely watched by their doctor in order to reduce or adjust medication as needed. If not properly monitored, individuals may experience potentially dangerous side effects from over-medication. The most notable of these include:
• Type 1 or 2 Diabetes (or on medication for diabetes)
Why Ketone Levels Matter
Elevated ketone levels may be a key reason why a ketogenic diet can be so effective for managing lipedema symptoms. Even though there are commonalities, each woman experiences lipedema uniquely. By monitoring ketone levels, women with this disorder can begin to learn how various lifestyle factors, such as diet, exercise, and stress, can impact their symptoms. A blood ketone monitor can be a valuable tool in the process of discovering which interventions will work best.
Emerging evidence suggests that ketogenic diets are beneficial for the treatment of lipedema by helping to reduce weight and manage other symptoms. Though there are many possible reasons for this, more research is needed to help clarify why keto is helpful and which mechanisms provide the most benefit. Some possibilities beyond weight loss include helping to reduce the inflammation and swelling that can come with lipedema or simply as a result of the ketones themselves. Although the ‘why’ is still being explored, because lipedema can be such a debilitating disorder with a profoundly negative impact on those who have it, especially if it is poorly managed, ketogenic diets present an exciting development that may offer new hope to the millions of women currently struggling with this condition.
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Leslyn Keith. Leslyn is a certified lymphedema therapist and has been treating lymphatic and fat disorders for over 20 years. She conducted a pilot study while pursuing her doctorate in 2015 that investigated the effectiveness of a lifestyle group that promoted a ketogenic diet for participants with lymphedema and obesity. Since then, she has written two books and published several articles about the effectiveness of a ketogenic diet for lipedema and lymphedema. She currently researches, consults, and lectures on lymphedema, lipedema, and obesity nationally. Leslyn is Director of Research and Board President for The Lipedema Project and an instructor in lymphedema therapy for Klose Training and Consulting.
Siobhan Huggins. Siobhan has been on a ketogenic diet for over five years and was diagnosed with lipedema in 2021, which led her to learn more about the science of nutrition for lipedema management. She has since become the research specialist and board director of the Lipedema Project, where she focuses on ketogenic metabolism, lipedema pathophysiology, and conservative approaches to lipedema. She has been an independent researcher focusing on metabolic disease, ketogenic metabolism, and nutrition for over four years, and has given multiple presentations about the intersection of nutrition and disease with a special focus on ketogenic diets.