Lipedema and Diets

This is a subject that sparks a lot of emotion with Lipedema sufferers. Most of us have spent years being told that what’s wrong with us is that we “just need to lose weight and exercise.” Well, my response is that you can just f*ck right off. Seriously.

The problem is that maybe when and if we are smaller, but presenting Lipedema, we worked our asses off eating very little and saw nearly no results. It’s become a battle we feel we can’t win and it’s a cycle that repeats itself for most of our lives. 

I have another blog that has nothing to do with Lipedema, and it’s riddled with diet-related posts. Scrolling through my Facebook history, you’ll find posts going back to 2008 detailing my many diet journeys. Ugh. 

There are diets that are recommended to help with Lipedema, and I will list those below. But as this is my blog and our journey, I’m going to share my experience with specific diets and Lipedema.

I’ve done almost every fad diet, I think. I’ve paid for one-on-one diet counseling and accountability three times now (all different programs). I’ve done Weight Watchers and others, only a couple have actually resulted in my waistline getting smaller (even if my thighs didn’t). So, without further ado, here they are in order of oldest to present and the results.

Standard American Diet – SAD Diet

Turns out that eating whatever you want, whenever you want, including fast food, snacks, soda, and other crap leads to (surprise) obesity and feeling like sh*t. Sleep apnea, exhaustion, fatigue, migraines, irritability and everything else you can think of that’s lousy seems to get exacerbated by eating this way.

I tried eating more salads and rolled oats (aka oatmeal), and less macaroni and cheese, but portion control seemed meaningless when I weighed myself. I tried eating 6 small meals a day. But you know what happens when you eat 6 small meals of processed crap a day instead of three? You still get fatter and feel awful. I found in the end that additives like food coloring, MSG, and a host of other toxic ingredients commonly found in highly processed foods were literally destroying my health. At my biggest, I was a size 22 and 240 lbs (over 17 stone or just under 190kg) and I was miserable. That’s when I knew I needed to learn how to eat differently.

Traditional and FAD Diets

I think it needs to be said that when I pay for a diet and have to show up, I’m pretty compliant. I can stick to something for the long-haul and only rarely fall off the wagon.

There were a few diets I tried following, and I think the fact that I lost so little weight so slowly (compared to others on the same plan as me) eventually led me to the idea that I needed to find a sustainable way of eating for the rest of my life. That eventually happened for me and once I had that mindset, I did lose weight whether intentionally or otherwise.

Weight Watchers for 3 months and ended up losing very little. I was unhappy, swollen from all the processed meals and undernourished. I’ve heard of people doing well with it, but I do not think it’s right for people with Lipedema because it still allows so many inflammatory foods.

Dr. Cohen’s 1st Personal Diet which is a diet you get after you send in a blood test. It’s supposed to reset your system so your body handles food properly. I did the program diligently for months, but was hungry the whole time and lost very little and it didn’t reset anything.

HCG Diet was a thing years ago. There’s even a story about a woman who sounds like she had Lipedema who successfully did it. You get injections of a pregnancy hormone called HCG that tricks your body so you can eat about 600 calories a day without feeling hungry. So, I did 3 rounds of this over 5 months and lost 18 pounds and went from a size 18 to a size 14/16. I was swollen and hungry the whole time, and in the end, it created a weird imbalance with my thyroid. My best friend did three rounds too and went from a size 18 to a size 6. I was so annoyed, I can’t even… Thanks, Lipedema.

Eventually, I stopped obsessively dieting and started researching. This led me to the first diet I really did longer term and could see as a long time way of eating (WOE).

Whole-Food Plant-Based Vegan Diet

A vegan diet is no animal protein whatsoever. None. No fish. No meat–not even once a week. No dairy. No eggs. No animal protein whatsoever. I ate this way for over 4 years. 

In that whole time, I did not eat any animal protein, I ate minimally processed foods and no sugar. Over the first couple of years, the weight actually started coming off-which was ironic because I wasn’t even trying to lose weight at that point. I was just trying to feel less like I was dying and wanted to heal a body that was not doing well. I watched a documentary called “Forks Over Knives” and jumped right in.

At first my body responded well, and small things resolved and my body felt cleaner. But I would swell so badly in the summers with pitted edema and my legs would feel heavy and ache. Still, I persisted.

In the summer of 2012, my husband and I came back from a one-week cruise where we’d been in the British Virgin Isles on a retreat. My feet were so swollen that I could not wear sandals of any kind. Elevating them didn’t seem to help. Additionally, there was systemic pain that had been all over, but mostly in my legs, along with serious memory gaps and vertigo. This crisis led me to a plant-based medical doctor in Northern California.

That doctor diagnosed me with Dercum’s Disease and put me on a medically supervised water-only fast for a total of 40 days. When we broke the fast and did the slow process of refeeding, I went back onto a solid whole-food plant-based vegan diet with no salt, no oil and no sugar. My mind was sharp after the fast, but the pain was ever-present. 

My husband and I drove home from California to Florida taking a slow sight-seeing road trip, and I continued to swell along the way. I know now that I was experiencing systemic inflammation and this was triggering the Lipedema pain. But I didn’t know that then.

While I did eat grains, I tried to stick to sprouted grains and organic. I wasn’t specifically gluten-free and do wonder if that may have kindled the inflammation. There is other research I’ve found that talks about plant toxins and which plant-based foods can cause inflammation, but I didn’t know about any of that back then. All I knew was that my body hurt, and it seemed that the better I ate, the worse I felt.

Whole-Food Plant-Based Vegetarian Diet

(some dairy and eggs)

After I was diagnosed by Dr. Herbst in 2013 with Lipedema (and not Dercum’s Disease), I went to Bavaria, Germany and had 3 surgeries. While in Bavaria, I found it difficult to find vegan-friendly food that wasn’t just salads or bland veggies. Rural Germans do love their dairy and eggs! So, we added those to my whole-food plant-based diet, along with a little bit of sugar. 

After the surgeries, I had even more clarity and the crippling Lipedema pain was reduced to a dull whisper. I continued eating a vegetarian diet over the next couple years and did okay in terms of Lipedema pain, but I didn’t feel well, and I didn’t feel rested. I continued to swell and couldn’t sit for long periods of time.

By 2015, I noticed a deepening throbbing pain in my thighs when I had my period. I told one friend only. It was in a moment of panic, and I cried because I was afraid that my Lipedema was returning.

It would be another year before I’d tell my husband-though he had already suspected it when he observed me absently rubbing my legs in an effort to soothe them. And by then, my fogginess was enough that I was struggling with people’s names again. 

Random Eating Diet

(fixing the cells and healing through random foods or something like that)

In my never-ending quest to feel anything remotely close to what I imagine “normal” is, I kept searching. I talked to a friend who had recently fixed some serious problems with the help of a nutritionist. Not just any nutritionist though, a Cellular Nutritionist learned in microbiology.

In June I contacted this guy and started a long-term program to heal my body. I ate a series of different ways over 6 months under his guidance in an effort to help me fix my body from the cellular level up. I should have journaled this part better because some of it was very very good. 

I’ll share the parts I do remember.

Every morning, first thing, I weighed myself naked after eliminating. I texted my weight along with any information on how I was doing, and a detailed list of whatever I ate the day before. He would respond with critiques and direction based on my statistics and information. Here’s roughly how it rolled out…

For the first few days, I drank water with Himalayan Salt and fresh lime juice. This was so that I could get some much-needed hydration with some natural electrolytes. He did not have me change my diet at all during this time.

The next week, he had me walk barefoot on the beach every evening (around sunset) for at least 15 minutes. If we hadn’t lived near the beach, he’d have had me walk outside on the grass or Earth barefoot. This is called Earthing or Grounding and is an incredible method of healing and reducing inflammation. 

Then, I ate nothing but fruit for a week. That was weird and I didn’t care for it after the first couple days even though I had been vegan for many years. He also had me go out and lay in the sun for 15 minutes each day at around 4pm.

The next couple of weeks, I ate copious amounts of organic berries. Strawberries, blueberries, blackberries, raspberries all day every day. THIS made me super sleepy. He explained that in flooding the body with nutrients and antioxidants, and that it was allowing the body to heal at a cellular level and basically “scrubbing” cells and making them clean and new so sleep was just my body’s way of saying it needed a break to heal. So, I napped whenever I needed to.

I think he had me switch my breakfast to scrambled eggs over raw baby spinach after that. Just two eggs with extra virgin olive oil on the salad part. For lunch and dinner, he had me eat spinach greens and blueberries. That’s all. No variety whatsoever. That went on for a couple of weeks and was difficult near the end.

It was at the end of this phase that he had me reintroduce red meat to my diet. Weirdly, I had been craving it for a couple of days and never even mentioned it when he asked me if I would be willing to add it. I said yes and the next day replaced the blueberries with 2oz of grass-fed, grass-finished beef to my salads twice daily. 

My weight dropped and I settled into a good rhythm for the next three months, eating the same thing day in and day out. I didn’t tire of it particularly, and I experienced a sense of clarity and reduction of pain that I hadn’t felt in ages. Like truly. My husband and I built two outdoor picnic tables at this time. I launched a blog I’d been dreaming of. I painted and created, wrote like mad, uncluttered my home and started living again. In fact, I remembered that on Christmas Day, I was struck by the fact that for the first time in a long time, I was completely in the moment and not distracted by constant nagging pain. My memory was sharp and I felt whole. 

Sadly, he changed it up again for the “next phase” and added different foods and some supplements. I didn’t physically respond well to this and I had difficulty following his logic on why. This made it harder for me to comply as I just didn’t feel well, and so I eventually quit. 

Dirty Keto

Back on my own, I decided to go back to some form of how I was eating when I was last doing well. That would be the ketogenic part, I decided to get back to that on my own. I ate keto but had berries and whipped cream, a little almond and/or coconut flour keto treats, fat bombs, avocado and daily fat coffee or fat tea (with butter, MCT oil, and heavy cream). The change was immediate even though I wasn’t as strict. But, it’s hard to eat such a rigid diet without someone to answer to. This helped me maintain a stable weight for the most part even though I was by no means perfect. But I had very little swelling, didn’t gain much weight, and felt overall pretty good.

I followed this way of eating through September 2016. That’s when my husband and I embarked on an adventure that started in Greece and ended in the UK.  

Regular Food – All. Bets. Are. Off.

(I don’t recommend this at all)

From October 2016 to early 2019, we did a LOT of travel. We went to Greece where my son had a destination wedding, then spent three weeks exploring Greece and Italy and eating whatever as travelers. Then we landed in the UK in November and had scones and cream, tea, cookies, and chocolate. I tried to rein it in and started eating smaller meals like eggs and bacon for breakfast, healthy fats like avocado, and very little sugar or junk food, but some grains or rice when dining out. However, we did a lot of dining out. We came back home to Florida in June of 2017, and just kind of kept eating the way we’d eaten abroad.

This turned out to be awful for my body. Between the end of 2017 and early 2019, my husband and I logged over 120,000 miles in air travel. I never wore compression, nor did I realize I needed to. My Lippy pain grew, along with the swelling and constant discomfort. 

It didn’t look like the travel would be slowing down any time soon, and I was feeling pretty awful, so I tried to recall when I was last doing my best. We were staying with friends in South Africa who were heavily into the Ketogenic Diet, so it was like everything came together.

The Ketogenic Diet

Full disclosure, I have not followed keto like I did on that earlier program where I was relatively pain-free and thriving. On that program, it was eggs in the morning with avocado on a bed of greens with olive oil. Then 2oz grass-fed steak on a spinach salad with olive oil and avocado. The same again at dinner. No dairy whatsoever was on that plan. No keto treats. No almond/coconut flour. Just greens and steak and good fats like avocados and olive oil. 

I have, however, lost 20 pounds over the past several months without being perfect. 

I consume dairy now in my tea, when I cook, some cheese, etc. and I think that it’s actually my undoing. I still feel achy and have pretty significant lippy pain, and I read from other Lipedema Warriors that removing dairy is the big one. I’ve also recently discovered that seed oils can cause significant inflammation, so that’s a new thing to consider.

However, I have to say that something significant occurred despite the dairy.  Almost no more swelling. Not even when I fly across the country. Suddenly, my ankles are more visible. I still feel achy, and for sure the flying has taken its toll. Especially the international flights, but it’s vastly improved since switching to keto.

For whatever reason, this way of eating seems to help with the edema significantly for me. I’ve decided to dial it back to eating healthy keto and generally skipping the processed keto treats and flours, eliminate dairy, and see where this takes me.

Conclusion

And I have to say that the conclusion I’ve come to is simple: eat foods that reduce inflammation and do not cause inflammation. Period. 

Recommended Lipedema Diets

The Keto Diet

Short for the Ketogenic Diet. This is a diet that stresses getting the body into a state of ketosis where the body switches from running on Glucose to running on Fat or Ketones (a by-product of burning fat). Stressing good quality protein, healthy fats (avocado, extra virgin olive oil (EVOO), coconut oil, butter, fatty fish, some nuts), and good carbs such as non-starchy vegetables (think greens), and some berries.

My favorite keto expert is Ben Azadi because he focuses on cellular health and reducing inflammation instead of only focusing on weight loss, and he has the simplest keto guide to get started (and it’s free).

Keto with Intermittent Fasting

One way to counteract inflammation and insulin resistance is through low carbs and intermittent fasting. It can be as simple as eating the last meal at 6pm and eating the next day at 11am, and no snacking between meals. Or eating two meals a day instead of 3 (my personal fav). There is a lot of information on doing these properly.

Honestly, Dr. Herbst even stated in 2020 that the most effective plan she’s observed is low carb/keto and IF (intermittent fasting). I’ve personally observed more success in the lipedema arena with that combination.

Again, my favorite keto expert is Ben Azadi because he focuses on cellular health and reducing inflammation instead of only focusing on weight loss, and he has the simplest keto guide to get started (and it’s free). He discusses IF and the best way to do it, and has developed a method called Keto Flexing.

LCHF (Low Carb High Fat)

Similar to keto, but not necessarily trying to be in a ketogenic state. This is exactly what it sounds like: Low carbs (mostly fruit and veg and/or high fiber resistant carbs), High Fat (good fats only please). Here’s a great link to a website I love and used after I completed my Random Eating Program. DietDoctor.com

RAD (Rare Adipose Disorder) Diet 

This diet was designed by Dr. Karen Herbst and other specialists some years ago. It eliminates inflammatory foods and mostly recommends organic fruits and veggies, pasture-raised/organic chicken, and other healthier lower-fat protein sources. No dairy or wheat or gluten.

Auto-Immunity Protocol aka AIP

You know how I kept banging on about inflammation? Yeah. So, I still feel that way.

Chronic inflammation is a problem with serious long-term consequences not just with Lipedema, but in life. The thing is that different foods can trigger inflammation in different people. This makes it difficult to find the culprit that may be preventing weight loss or pain relief.

This is a pretty straightforward protocol that takes all the foods that by scientifically proven research create inflammation most commonly in people and removes them.