A guest blog post by Leslyn Keith, OTD, CLT-LANA and Catherine Seo, Ph.D. This is a 7-minute read.

Lipedema, a little known and often misdiagnosed fat disorder, has been traditionally thought to be resistant to diet and exercise. Rigorous efforts by many with lipedema proved futile until recently. Research conducted by author Leslyn Keith, OTD, CLT-LANA in 2015 demonstrated a significant breakthrough for those with lymphatic disorders using a very low carbohydrate, high-fat diet known as ketogenic. This way of eating minimizes the symptoms of lipedema, such as pain and swelling, results in weight loss, and improves the quality of life for women with the condition.

Collaboration Background

The coauthors, Leslyn and Catherine, first met at the National Institutes of Health Symposium, The Third Circulation: Lymphatics as Regulators in Health and Disease, in September 2015. Leslyn presented her research on the ketogenic diet, “Lifestyle Modification Group for Lymphedema and Obesity Results in Significant Outcomes.”

Their conversation began an ongoing collaboration to address this question: Could the ketogenic diet work for women who are struggling with lipedema? Their initial conversation led to a webinar on the possibilities of keto for lipedema, a series of online classes introducing keto as a way of eating, the formation of a private Facebook group to support women in their lifestyle changes, and several online summits interviewing worldwide experts.

n = 1 Becomes n = 8,700+

As lipedema ladies began to experiment with a keto diet and they shared reports of amazing results by posting before and after pictures of themselves, it became more apparent that this way of eating may be effective for managing lipedema. Word spread throughout the community. More and more lipedema ladies adopted keto. More and more shared positive results. As is the case with many word-of-mouth cases, more and more women jumped at the opportunity to try this lifestyle change. 

Lipedema ladies experienced the following benefits from a keto diet:

• Reduced swelling
• Decreased or complete resolution of pain
• Weight loss
• Increase in mental clarity
• Decreased size of the lower body
• Improvement in quality of life
• Improvement in mental/emotional state

Two initial results were commonly seen within the first couple of weeks after adopting keto for lipedema:

1.     Swelling/inflammation decrease. Many lipedema ladies reported experiencing an increase in urination as inflammation and swelling reduced and the body began to come into balance.  

2.     Pain reduction. There can be a significant reduction in the levels and intensity of pain experienced in lipedema limbs. This dramatically improves quality of life. 

Many of the women who were early adopters of a ketogenic lifestyle were so successful, they became mentors for other women who were facing the same challenges. Inspirational success stories were posted, and it became clear that lipedema ladies were seeking additional information and support to make this positive change in their life.

What is a Ketogenic Diet? 

For many women who have lipedema, the first question is: What exactly is a ketogenic diet? Is it the same as a low-carb diet? Is it the same diet a person with diabetes would follow?

A ketogenic diet is very low in carbohydrates and high in healthy fats. When carbohydrate intake is restricted, the body starts using dietary fat, as well as fat stored in adipose tissue, for fuel. A limitation on carbohydrates results in the production of ketones from fat, or ketogenesis.  This shifts the body from a sugar-burning machine to a fat-burning machine. While it is similar to a low-carb diet, a ketogenic diet typically involves consuming an even lower level of carbohydrates (< 20 g per day).

Because a ketogenic way of eating requires you to limit your daily carbohydrate intake to 20 grams/day or less, this means that foods like bread, rice, pasta, and starchy vegetables, such as potatoes, are eliminated from your diet. The focus is on eating real foods that provide protein and fat (essential amino and fatty acids), such as meats, eggs, and non-starchy vegetables.  

Foods that are high in carbohydrates (sugars), even if natural food like honey or fruit, must be severely limited or even avoided completely. Dr. Eric Westman, director of the Duke Lifestyle Medicine Clinic in Durham, North Carolina, terms fruit as “nature’s candy.” Candy is a treat to be indulged very rarely, if at all.

Keto diet recommendations:

• Very Low Carbohydrate: limit to 20 grams of carbohydrates per day or fewer. This is a strict target.
• Moderate Protein: moderate protein intake is 1.5-1.75 g per kg of “ideal” body weight.  For a 150 lb. person (68 kg), this would be 102-119 g of protein. Don’t worry about hitting this target -- let your satiety be your guide.
• High Healthy Fat: healthy fats include highly stable plant- or animal-sourced saturated and monounsaturated fats (olive oil, avocado oil, coconut oil, lard and butter) and omega-3 polyunsaturated fats from marine sources. Fill in with fat for satiation. Do not worry about hitting a target for this nutrient.  
• Avoid Partially Hydrogenated Seed and Vegetable Oils: corn, safflower, sunflower, grapeseed, soy, and peanut oils are high in omega-6 polyunsaturated fats.  Getting too much of this kind of fat can be unhealthy. Additionally, the heating and chemical process necessary to render oil from seeds results in a damaging and inflammatory product. 
• Eliminate Artificial Sweeteners and Sugar Substitutes: artificial sweeteners can result in weight gain or, at the very least, a weight loss stall. Continued reliance on sweetened foods keeps your craving for sugar and carbohydrates alive, can cause an insulin response, and stimulate hunger. You will find that you will feel more satiated and are able to resist high carbohydrate foods much more easily if you don’t use these products.

Benefits of a Ketogenic Diet  

• Insulin Regulation: familiarize yourself with the idea that long-term carbohydrate restriction will lower insulin, the body’s fat-storage hormone.
• Nutrients, Not Fullness: a traditional Western diet distends the stomach, making you feel temporarily full. In the keto diet, you are eating to fulfill your need for nutrients rather than chasing a feeling of fullness.
• Fat Creates Satiety: the consumption of fat creates a feeling of satiety which lasts for long periods. You may find that you need to eat only once or twice a day.
• Inflammation is Reduced: carbohydrates are inflammatory which can create pain and swelling. However, fatty acids and ketones are anti-inflammatory and promote healing.
• Carbohydrate Addiction: eating carbohydrates causes an insulin spike, which results in more hunger. This can result in unrelenting cravings for more high carbohydrate foods, volatile mood swings, grazing behavior, eating disorders, weight gain, and other health issues.

A Note About Conservative Treatment 

We should note that the ketogenic diet can give great results for people with lipedema, but other conservative treatments are required for truly remarkable results. Work with a trained therapist well-versed in lipedema to develop your personal protocol for management. Your protocol may include: compression therapy with a pneumatic compression pump and/or compression stockings, manual lymph drainage, skin care, and exercise. Other complementary treatments may be incorporated into your home program such as vibration plates, acupuncture, and meditation.

Theories and Possible Mechanisms

Why does the ketogenic diet work so well for people with lipedema? There are multiple theories about the mechanisms involved. Here are a few ideas.

Onset and Timing

The onset of lipedema correlates with naturally-occurring times of hyperinsulinemia and insulin resistance, like puberty, pregnancy, menopause. These are natural periods in a woman’s life where she will have a high tendency to increase body fat. Dr. Robert Cywes, specialist in weight management and bariatric surgery for adults and adolescents, suggests that women with lipedema may have an innate hypersensitivity to insulin and/or a tendency toward higher levels of insulin in the blood.  

Lipoprotein Lipase

Paul Mason, MD, Specialist Registrar in the Australasian College of Sports and Exercise Medicine, noted that lipoprotein lipase (LPL) is used in the body to store fat and is stimulated by increased levels of the hormone insulin. Women with lipedema have an increased concentration of LPL in lipedema fat.

Safe Storage

Paula Stewart, MD, Physical Medicine & Rehabilitation Specialist, advanced the notion that women with lipedema are “the mothers of our species” with the ability to store fat in “safer” areas of the body beyond the abdomen. In this theory, women with lipedema are advanced survivors, better able to reproduce and care for their young in times of famine.

Sex Hormone Dominance

Dr. Gabriele Faerber, specialist in phlebology and lymphology, including nutritional medicine, in Germany, noted that since increased insulin leads to increased aromatase activity and increased conversion of sex hormones to estrogens, women with lipedema tend to show estradiol dominance.

Painful Fat

Ben Bikman, PhD, scientist and professor with a special emphasis on the origins and consequences of metabolic disorders, including obesity and diabetes, found that hypertrophy of fat cells leads to insulin resistance and the leaking of fat and inflammatory proteins into the interstitium. Could this be the cause of painful fat?

Famine Response Hypothyroidism

Carol Rowsemitt, PhD, RN, FNP is a Family Nurse Practitioner with a specialty in obesity and thyroid functioning. Her research found that repeated weight loss attempts lead to a type of famine response hypothyroidism that is not detected with traditional testing. It may be revealed that many women with lipedema are hypothyroid, which further limits the ability to lose weight.

For Further Reading

We hope you’ve been inspired by the new information you’ve learned about lipedema and the ketogenic diet. For more information, please take a look at Leslyn’s book, The Ketogenic Solution for Lymphatic Disorders. The primary purpose of this book is to give foundational knowledge to lymphatic professionals who want to incorporate the latest in nutrition science into their practice. It is a compilation of five years of research and study. Many people with lymphatic disorders who are exploring the use of a ketogenic diet have found this book to be a useful guide. It illuminates the idea that nutrition can support the lymphatic system and reminds us all of an important takeaway from all the latest research: fat fuels our lymphatics.

About the authors:

Leslyn Keith, OTD, CLT-LANA completed her Clinical Doctorate in Occupational Therapy in 2015 with an emphasis on lymphedema and obesity. She was certified as a Lymphedema Therapist under Klose Norton Training & Consulting in 2000 and became LANA-certified in 2001. Leslyn has started four lymphedema therapy programs in California, including two in private practice. She is the author of the book The Ketogenic Solution for Lymphatic Disorders and serves as a national speaker on topics including lymphedema, obesity, and private practice issues for clinicians.

Catherine Seo, Ph.D., is a media psychologist who researches obesity’s impact on women's lives. After a long search for answers to her own medical dilemma, including incorrect diagnoses and failed surgery, she connected with lipedema experts and discovered what was happening in her body. She shares this advice for anyone who may have lipedema: “I deeply hope this information can save even one woman from the circuitous, painful and difficult journey that I've navigated. There is hope. And most of all I want you to know: It’s not your fault.”