Lipedema & Lymphedema: Is There a Food Plan That Can Make a Difference?

Catherine Seo presented at the Lipedema Conference in Oslo, Norway in Oct 2016. There was a lot of interest generated about treatment and specifically conservative treatment through Low Carb High Fat (LCHF) Keto Way of Eating. Catherine and Leslyn Keith are writing a series of articles for the Norwegian publication, Lymfeposten.

This is the first in the series titled Lipedema & Lymphedema: Is There a Food Plan That Can Make a Difference?

This article is translated into Norwegian above. The English version is below.

You may have read and even personally experienced that lipedema is “resistant to diet and exercise” (Langendoen et al., 2009). Most of us have tried various diets and rigorous exercise programs with little if any long-term results. When Katrina Slagle Harris, a woman with lipedema and obesity, successfully lost 200 lbs/90 kg/14 stone during a 2 year period by following a ketogenic way of eating (WOE), we followed her progress with much interest and hope. She spoke about her food plan and weight loss at the Lipedema Worldwide Summit last summer. Her interview, along with that of ketogenic researcher Leslyn Keith, sparked great interest worldwide in the lipedema community. They both provided an alternative way of thinking about diet and suggestions for treatment of symptoms accompanying lipedema.

Ketogenic WOE and Lymphedema

In an unpublished pilot study performed in the United States by Leslyn Keith in 2015, participants were able to achieve significant change in body weight, waist circumference, skill performance, and quality of life if they adhered to a ketogenic WOE. Twelve participants enrolled in a 3-month lifestyle modification program that encouraged a ketogenic WOE and other lifestyle changes. Those participants who adopted the diet were able to achieve a mean decrease of 18 lbs. (8.2 kg) as well as significant volume reduction in limbs affected by lymphedema. In contrast, those who did not adopt the diet did not achieve any significant outcomes.

The overlap of characteristics of lymphedema and lipedema led us to question if the ketogenic WOE may also benefit women with lipedema. Both conditions have lymphatic disruption that results in edema (Bilancini et al., 1995; Forner-Corero et al., 2012). It is also fairly common in both lymphedema and lipedema to have co-morbidity of obesity (Okhovat & Alavi, 2015; Pillar, 2016). A recent case report showed that weight loss in a woman with lipedema resulted in a reduction in limb volume in her affected lower body (Hodson & Eaton, 2013). If lipedema, like obesity, is a metabolic disorder, then it made sense that a ketogenic WOE would be effective.

What is Low Carbohydrate Dieting?

Misunderstood and misrepresented observational epidemiological data from diet studies in the 1950’s and 60’s (Keys, et al., 1966) have resulted in a faulty recommendation to reduce dietary fat intake (Teicholz, 2014). This led some to adopt a diet plan of severe fat restriction. As we learned more about diabetes, carbohydrate restriction was also added to the mix, resulting in a very low-calorie diet. This was certainly effective in the short term, but because many low carbohydrates, low-fat dieters were left hungry, tired, irritable, and in a brain fog, it was unsustainable for the long term.

Despite over 100 years of documented success from combining low carbohydrate with high-fat consumption for the treatment of obesity (Banting, 1864) and epilepsy (Helmolz & Goldstein, 1938), Dr. Robert Atkins was considered a pariah when he introduced his Atkins Diet in the 1970’s (Atkins, 1972). Since 2002, over 50 randomized controlled trials with human subjects have shown that Dr. Atkins was correct: reducing dietary carbohydrate and increasing dietary fat is a healthy, sustainable, and enjoyable way to manage weight and other health conditions.

What is Ketogenic WOE?

A ketogenic diet consists of very low carbohydrate, moderate protein, and high fat. Dr. Andreas Enfeldt, known as the Diet Doctor http://DietDoctor.com) has defined it in this way, “A ketogenic diet (keto) is a very low-carb diet, which turns the body into a fat-burning machine….similar to other strict low-carb diets…designed specifically to result in ketosis. It’s possible to measure and adapt to reach optimal ketone levels for health, weight loss, or for physical and mental performance.”

Lipedema & Keto: Testing the Waters

Based on the promise of research with a ketogenic WOE for lymphedema, The Lipedema Project conducted a pilot online class led by Katrina Slagle Harris and Leslyn Keith during September-October 2016. Results have been promising enough that a Feasibility Study has commenced for December 2016 – May 2017. For now, reports are anecdotal but impressive and promising.

One woman from Canada reported:

“Today is one month for me. I am thrilled with my results so far. I am down 10.2 pounds and 14 1/2 inches! The majority of my lipedema is from my waist to my knees and that is where I lost the inches. I am down at least an inch on every measurement from under my breasts to my knees!”

Another woman from New Zealand wrote to us:

“6 weeks after I started eating a ketogenic diet (no sugar no starch – high fat, moderate protein, low carbohydrates) I am down 16 kg!!! (35 pounds) I also no longer use my walking sticks because my knee inflammation is hugely reduced, energy levels have increased and my thinking is clearer.”

A woman from the USA who had reportedly been struggling described her experience:

“9 months ago I needed to use a walker. My lipo lymphedema was beyond painful…it was completely debilitating and was stealing my life from me. Today I can jog 3 miles on a treadmill and I’m starting to lift weights this week. I have also lost 30 pounds on keto in 60 days. If I can do this…you likely can too….I have not felt this good in 2 decades.

Efforts Producing Results

While there is an effort in learning and maintaining a ketogenic lifestyle, many have told us that the process is well rewarded. Ketogenic WOE offers the possibility for a reduction in symptoms and weight. It might be worth a try! Over the next year, throughout 2017, we will be presenting additional articles on different aspects of ketogenic WOE including understanding macronutrients, how eating healthy fat can help, and how to manage the successes and challenges of this kind of a diet change. We invite you to join us!

For more information about lipedema – http://lipedemaproject.org

For more information about lipedema & keto – http://keto.lipedemaproject.org

Bios

Catherine Seo, PhD

Catherine Seo, PhD, is co-director of The Lipedema Project, with Mark L. Smith, MD, FACS, Director of the Friedman Center for Lymphedema Research and Treatment and Vice Chair of Surgery at The Center for Advanced Medicine at Northwell Health in New York. The Lipedema Project is a comprehensive transmedia program working to increase awareness and provide education, research and treatment for lipedema. Dr. Seo is a professor and directed/produced the documentary film, Lipedema: The Disease They Call FAT.

Contact: [email protected]

Leslyn Keith, OTD

Leslyn Keith, OTD, OTR/L, 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. Dr. Keith has started four lymphedema therapy programs in California including two in private practice. In addition to treating lymphedema, she currently researches, consults, and lectures on lymphedema, obesity, and private-practice issues nationally and is a lead trainer for Klose Training.

Contact: [email protected]

References

Atkins, RC (1972). Diet Revolution. New York: Bantam Books.

Banting, W (1864). Letter on Corpulence: Addressed to the Public. New York: Mohun, Ebbs & Hough.

Bilancini, S, Lucchi, M, Tucci, S, & Eleuteri, P (1995). Functional lymphatic alterations in patients suffering from lipedema. Angiology, 46(4), 333-339.

Fife, C. E., Maus, E. A., & Carter, M. J. (2010). Lipedema: a frequently misdiagnosed and misunderstood fatty deposition syndrome. Advances in skin & wound care, 23(2), 81-92.

Forner-Cordero, I, Szolnoky, G, Forner-Cordero, A, & Kemeny, L (2012). Lipedema: An overview of its clinical manifestations, diagnosis, and treatment of the disproportional fatty deposition syndrome – systematic review. Clinical Obesity, 2, 86-95.

Helmholz, HF & Goldstein, M (1938). Results of 15 years’ experience with the ketogenic diet in the treatment of epilepsy in children. American Journal of Psychiatry, 94(5), 1205-1214.

Hodson, S & Eaton, S (2013). Lipoedema management: Gaps in our knowledge. Journal of Lymphoedema, 8(1), 30-34.

Langendoen, SI, Habbema, L, Nijsten, TEC, & Neumann, HAM. (2009). Lipoedema: from clinical presentation to therapy. A review of the literature. British Journal of Dermatology, 161(5), 980-986.

Keys A, Aravanis C, Blackburn HW, et al. (1966). Epidemiological studies related to coronary heart disease: characteristics of men aged 40-59 in seven countries. Acta Medica Scandinavica, 460, 1-392.

Okhovat, J-P & Alavi, A (2015). Lipedema: A review of the literature. The International Journal of Lower Extremity Wounds, 14(3), 262-267.

Peled, AW, & Kappos, EA (2016). Lipedema: diagnostic and management challenges. International Journal of Women’s Health, 8, 389.

Pillar, N (2016). Links between BMI and the increasing incidence/prevalece of chronic oedema: What is our future? Journal of Lymphoedema, 11(1), 5-6.

Szél, E, Kemény, L, Groma, G, & Szolnoky, G (2014). Pathophysiological dilemmas of lipedema. Medical hypotheses, 83(5), 599-606.

Teicholz, N (2014). The Big Fat Surprise: Why Butter, Meat, and Cheese Belong in a Healthy Diet. New York: Simon & Schuster.