Starving yourself is not the answer

By Tatjana van der Krabben

Starving yourself, starvation, fasting: these words seem to pop up everywhere these days in relation to lipedema. And not just with respect to lipedema. There’s talk of ‘starving tumors’, resetting and/or cleansing your body by fasting, skipping meals like a caveman etc. The emphasis is shifting to what is not ingested, instead of what you should or could ingest. Before you know it the (presumed) science behind these tools is translated into numbers of calories and ways to cut calories, as we are all drilled with the low-calorie myth.

With doctors still (!) recommending gastric surgery for lipedema, the fad of the hCG diet which was paired with extremely low calorie food plans, the popularity of juice detox-fasting and the presumed beneficial effects of (intermitted) fasting, the extreme low calorie theories as somehow being beneficial for lipedema after all keep creeping into conversation. I don’t buy that. Plus, this line of reasoning is creeping me out. It creeps me out because it’s a slippery slope: if you don’t lose weight at, say, 1500 calories a day, they drop the recommendation to 1200, then 1000. Where does it end? With hCG they dropped to 600 calories. That’s incredibly low, to put it mildly. Just because we need to fit the calories in and calories out myth.

Weight-loss is not simply about calories in and calories out. Yes, a lot of doctors still say that, but that’s because they didn’t keep up with research on this topic since medical school. A frustrating example in my own household: my son has to eat like crazy just to maintain a healthy weight, my husband was the same and can still eat an insane amount of calories without showing it, but my daughter and I have to really watch what we eat. There is no general standard in metabolism which you can quantify with a number of calories per day, even though this is being done anyway. We simply are all different and don’t process food alike.

On top of that, lipedema is not caused by overeating. It can be aggravated by overeating, but that’s another story. As lipedema is not caused by overeating, it seems farfetched that eating (extremely) little could fix it. I know many of you are familiar with the images of women with anorexia, who still displayed clear signs of lipedema. Sadly, these women prove that point.

Starving yourself is not the answer. Food is not the enemy. Good food provides nutrients, the stuff that keeps you strong and healthy. You can’t build muscles on air. You can’t maintain strong bones and teeth, and have enough energy to face your day by limiting yourself to a few mouths-full of food day in day out. Food is sustenance.

Moreover, lipedema appears to coincide with deficiencies in essential vitamins and minerals. Vitamin B12 and D deficiency is notorious among lipedema patients, as low levels further undermine energy levels. Some say it’s because we already tend to eat too little as it is. Others speculate it’s something in our metabolism. I don’t know what it is, as lipedema metabolism has never been studied. I only know that if you’re already prone to deficiencies it’s not particularly helpful to deprive yourself of sufficient quantities of foods containing essential vitamins and minerals.

There’s no nice way to put it. Lipedema in itself already can already affect quality of life. Deficiencies only make you feel worse. It’s a sign your body doesn’t get enough of what it needs to keep the system running smoothly. It’s not just a matter of discomfort: deprivation leads to health problems and in the long run to permanent health damage.

I know many of us have to use supplements or get for instance B12 shots to compensate regardless, but access to supplements cannot justify deprivation. My two cents: even if modest (!) fasting or throwing in a liquids-only day is said to be beneficial, it should be nothing but a tool in the bigger picture, never a goal in itself.

Losing circumference and weight with lipedema legs

By Tatjana van der Krabben

Losing weight from your legs and losing circumference on your legs. Despite having lipedema. Can it be done? Many say no. Some say yes. Now, what is it? It’s individual, that’s what it is. It’s always individual cases of people saying they managed to lose weight and they do it with very personal, customized regimes.

But what makes weight-loss in lipedema legs possible for some?

There are 3 factors that we know of. If you’re lucky one or more of these factors could help you reduce mass on your legs (and lipedema arms).

Inflammation

Although still not broadly supported, and certainly not in literature, it is believed that lipedema flares up with inflammation. With inflammation not only comes pain and fatigue, but also swelling. If you manage to reduce inflammation, you may be able to reduce the swelling. You’ll mostly shift water weight and toxins, but as a big added bonus you’ll feel better for it, too.

We don’t respond all alike to inflammatory factors. Some of us have cut out so many foods, additives and allergens they are clueless what else could possibly be causing the remaining inflammation. Others drop bread and sugar to a degree and shed pounds instantly. No, fairness is not on the table in the lipedema world.

An untreated serious edema component

If you have lipo-lymphedema or a strong edema component with your lipedema for another reason and you haven’t started treatment for that, there’s a lot to gain. Or to lose, actually. The more edema you have, the more water weight could be shifted.

Could, because the edema component is there for a reason. If you’re prone to swelling, it won’t magically disappear with (self) management. Or perhaps you can’t afford treatment or don’t have access to proper treatment. It takes hard work and more so dedication, but with untreated edema there’s usually margin for improvement there.

Amount of lipedema tissue in your legs

The top two factors I was aware of. But this one was an eye opener:

We don’t all have the same amount of lipedema tissue in our limbs.

As explained to me in a presentation by a therapist specialized in lipedema: some of us are lucky and still have a good amount of normal fat cells in their legs. That would be good news since normal fat cells do what the fat police wants: they do respond to diet and exercise. And there’s your personal margin for improvement. Assuming your thyroid is on top of his game and you’re physically able to exercise and, and…

Unfortunately all these factors are highly individual. This makes good results with diet, exercise, supplements and what not also highly individual. “Because I did it” is not proof you can lose lipedema weight. Most likely, if you have lost weight, you lost water weight and/or normal, unaffected fat, which is great, of course. Even if you don’t care too much about your size, dragging less weight around with you is always easier. It also may very well be a sign you are not only managing your weight, but also your lipedema in a way you experience less symptoms.

I would say (self) management of lipedema matters always. Whether you manage to drop weight or not. There are other things to gain from lipedema management: less discomfort, less pain, less fatigue and improved mobility. As I get older I must say I value these factors more than that number on my scales.

The thing with lipedema diets

By Tatjana van der Krabben

Recently I read a blog by The Well-Rounded Mama with a very accessible overview of lipedema symptoms. Something in her introduction resounded with me:

"However, when I have tried to research the condition, I've been turned off by many lipedema websites. Some pay lip service to being size-friendly but when you dig deeper, there is a whole lot of food neuroses and weight-loss rhetoric" – The Well-Rounded Mama

She was referring to websites, but truthfully you see this in support groups as well. We say you can’t diet it off and then talk about diet, recommend diet, compare diets. What is that?

We are all size-conscious

Society demands we are size-conscious. We were raised to be. Our doctors insist we are, because supposedly our size defines our health. Selected role models on TV and in films and magazines rub it in. Clothes stores pick sides and stock for either the slim or the plus-size, hardly ever for both. Even when they do, they direct you to separate floors.

You’re in or you’re out. And if you’re out, you can always conform by losing weight: this is popular belief and sadly, it doesn’t apply to reality. Not to lipedema, not to lymphedema, not to slow metabolism and…and…and… Not to mention the fact women are still largely being judged on looks. We evaluate what female role models outside the beauty industry wear or their new haircut – like that really matters or as if we would scrutinize the looks of their male counterparts like that.

Is talk of diet wrong?

Not all diet (talk) is bad, I think. Because although we tend to link the word ‘diet’ to ‘weight loss’, there’s more to it.
This is what the dictionary has to say on the subject (source: thefreedictionary.com):

diet   (dī′ĭt)

n.

1.  The usual food and drink of a person or animal.

2.  A regulated selection of foods, as for medical reasons or cosmetic weight loss.

3.  Something used, enjoyed, or provided regularly: subsisted on a diet of detective novels during his vacation.

‘The usual food and drink of a person’. That doesn’t sound so bad. We all got to eat, and drink for that matter.
‘A regulated selection of foods, as for medical reasons’. This could be us. This is how I see ‘diet’. Not some thing you deal with for a couple of weeks or months in attempt to reach some goal and leave it, but rather a lifestyle.

Managing lipedema through diet

‘A regulated selection of foods, as for medical reasons’. I see lipedema diet as something like a diet for diabetes or a slow working thyroid. It’s not like you can cure diabetes by following a diet or fix that thyroid, but it does help you manage the condition.

Manage, how? Through Lipese we get a lot of questions regarding diet and specifically what to eat to lose that dreaded lipedema fat. We always answer the same: change your diet and you won’t lose weight per se. With an underlying medical condition that affects your weight it definitely won’t be easy and perhaps it won’t happen at all. This is a disappointing message and not easy to convey, but this is where we currently are with lipedema treatment.

Is there still a point to it, then? What else would there be to ‘manage’? There’s mobility and strength. You can’t exercise and build muscle without proper nutrition. Trying to stop gaining can be a thing. Also very valid: pain management. By attempting to reduce inflammation, you could be able to reduce pain and become less prone to swelling.

Perhaps, trying, attempting, could: we’re all reaching. Preferably for the stars. But it’s far from easy. It requires getting to know your body and figuring out a diet plan that is right for YOU. For some stupid reason (venting some personal frustration here) we can’t make a list of do’s and don’ts we could ALL benefit from. Sadly, with lipedema it doesn’t work like with diabetes, where you can measure a concrete value and adjust accordingly then and there (that’s a bit simplified, of course). Yes, (contradicting) food lists do exist for lipedema, but it doesn’t work for all. Also, there is no research regarding diet or metabolism in lipedema.

Guess what happens next? We swap…dietary theories and suggestions.

Just as long it comes from a good heart and a healthy curiosity, I personally don’t see the harm. Have you found something that works for you? Congratulations! But be aware that the key to your success is yours and doesn’t necessarily work for others. Share & care. We are all in this lipedema boat together.

Is lipedema hereditary?

By Tatjana van der Krabben

Is lipedema hereditary? Interesting question. For starters, that is not proven. Yet? Another interesting question. If you ask me to speculate I wouldn’t go with hereditary full stop. And here is why.

Despite it often being quoted, lipedema is not a proven hereditary or genetic condition. Read the fine print; papers mostly say something like ‘possibly hereditary’ or ‘in part’. With family members displaying symptoms, one generation after another, going against the hypothesis of it being hereditary seems rather futile. Also, I can hear you gritting your teeth from here: “Is she implying I brought this on myself?!” Rest assured, I’m doing no such thing. But here’s some food for thought.

Regarding lipedema there are many assumptions going around. About percentages and numbers of women having it. Mostly 1 in 10 or 1 in 11 is mentioned to state the urgency of the matter. Sometimes in relation to a country or continent or even the world. Again, not proven. Worse, that’s just one estimate. Child et al (2009) came up with a minimum estimate of prevalence of 1 in 72.000. Those estimates are worlds apart. In a recent lecture dr. Damstra, a Dutch specialist, mentioned its occurrence in Asia is genuinely rare. So 1 in 10 in the world can’t be right. 1 in 72.000 sounds way to conservative to me; on an average summer day on a beach or in a theme park I encounter several ladies with lipedema. My point? Keep an open mind!

Am I playing it down? No. I believe the matter is actually getting more urgent. This is why. I’m coming from observation and am just hypothesizing, but the generation before me usually didn’t experience serious issues until menopause or a hysterectomy, often despite multiple pregnancies. As in, of course in retrospect there were some signs before, but their functioning was hindered only so much until then. My generation mblmmmb (read: forty-ish) experienced undeniable symptoms when pregnant. I now see girls still in their teens with stage 3. I also hear of more and more men getting diagnosed.

My generation did without junk food to mention of until our twenties. Soda bottles were made of glass until I was fifteen-ish and snacks and treats were limited to weekends and parties. I feel like we are the transitional generation in this picture. Of course in part this is the same debate as with autism and ADD etc.; is it getting more common or are more people seeking and getting help/diagnosis? No doubt more people seeking medical help has something to do with it. Something, but not all. I honestly see lipedema getting worse faster and faster.

Fact: the population as a whole is getting bigger. Fact: we get less exercise then we did in my grandmother’s day. Fact: our diet has changed tremendously from seasonally limited options and whole foods to mostly processed supermarket ‘food’. And here’s the thing we all know: let the average girl switch to granny’s whole foods and some exercise and her fat will melt away and with us not so much. Well, definitely not all of it. Also, we tend to gain faster eating the same type of food in the same portions. So, I’m leaning towards part circumstance and part predisposition. That would also explain how some manage to get virtually symptom-free by changing their lifestyle. If it’s genetics only, that would be rather strange, to say the least.

I’m not pulling a rabbit out of a hat here. Several researchers are hypothesizing along the same lines. This theory is telling me two things:

1. We run the risk of having an explosion of lipedema with young teens taking birth control already, supermarkets being the main food source for most which offers little whole foods and the increased digestion of xeno and phyto estrogens.
2. There’s a point to looking at circumstance and lifestyle. Change for the better what you can. Reduce inflammation, keep moving. Many are already travelling down that road with (some) success.

So, no, you are not to blame for developing lipedema. We all get caught by surprise, but please stay pro-active. It’s about quality of life. We all want it to be the best it can be. Right?

Lifestyle changes with lipedema – do or don’t?

By Tatjana van der Krabben

Here at Lipese we speak of hope and leaving no stone unturned on the road to recovery. This upbeat message isn’t necessarily welcomed. We come across countless reasons to stay clear of lifestyle changes:

- It’s genetic
- It’s progressive
- It’s incurable
- If lifestyle works, my family will blame me all over again for being overweight
- My doctors says low carb and going wheat-free and sugar-free is not proven
- My doctor says birth control with hormones can’t affect my legs
- Exercise hurts

We get it. Of course we do! We, too, are in this boat. Frustrating isn’t it? Having lipedema, getting mixed signals, being told time and again that there’s no research to support claims. Conservative treatment is compression, manual lymphatic drainage and the piece of advice to ‘watch your weight’. Frankly, that’s not a whole lot to go on, especially combined with the ‘lipedema is progressive and incurable’ message. I got this speech as well from my dermatologist when I got diagnosed.

I always get an itch I can’t scratch when I hear the word ‘incurable’. Don’t you? Lots of conditions were incurable at some point. ‘Incurable’ is so negative. How are you supposed to derive any motivation from that? And how does that mean ‘nothing will help’? Many beg to differ.

Lipedema need not be progressive. You could possibly even reverse some of the symptoms. There. I said it. Do I hold the magic ingredients to a potion or something? No. Still, lifestyle changes have stopped the previously experienced progressive nature of lipedema in its tracks for a growing number of patients. It takes searching and tweaking and trying and effort. Lots of effort. But you DO have options.

With people sharing their experiences online through social media, you get an idea of what is driving people. There is no single diet that will work, unfortunately. Women report different triggers for sudden weight gain and/or sore legs, but also variations in the extend in which they cut out grains and carbs. I was asking around which doctors now recommend going wheat-free and sugar-free; giving up both tends to yield results for all involved. I abandoned that idea and this is why. Truthfully, you could still dismiss me for lack of scientific substantiating, for the absence of any and all medical trials, either pro or con for leaving out certain food items or incorporating certain exercise. You could argue that for the lipedema specialists that recommend leaving out certain foods, there are at least as many doctors, if not more, recommending something along the lines of the food pyramid, calorie counting or gastric surgery. It’s all out there and they are all considered to be lipedema specialists. True. But if you’ll indulge me one minute on the soapbox? Just one minute. I promise.

Sugar

Sugar is not really food. It’s a sweetener. You don’t actually need it. More so, it’s unhealthy. Regardless what a doctor specializes in, he or she will not frown upon you for leaving out sugar. There’s nothing wild and crazy about quitting sugar. It won’t lead to nutritional deficiencies. So, if there is a little fiber of hope left in you, after all the dietary disappointments you probably had, that something could work, think sugar. Here’s the actual challenge: don’t substitute the sugar for artificial sweeteners. Unfortunately more and more evidence suggests that’s at least as bad if not worse than sugar.

My minute is up. I’ll get off the soap box as promised. Should you give it a try for a couple of weeks, will you let us know how it went?

Taking Care of Us

By Christina Routon

Anyone who's ever flown on an airplane with a child knows that if the oxygen mask falls the adult is supposed to put theirs on first. If we don't, we're likely to pass out and won't be able to help our children our ourselves.

Women in general are caretakers and tend to put others first - their husband's careers, their children's activities, even their friends. But when is it our turn to be cared for?

This isn't about being selfish. I completely agree with being a partner, being a mother, being a daughter, being a best friend. I know all the sayings like "The world doesn't revolve around you," or "It's not all about you." But sometimes it should be.

As women with lipedema we can't afford to NOT take care of ourselves. If we don't watch our diet, do some form of moderate exercise, buy the compression hose (and WEAR them!), take our supplements and meet with our doctors what could happen?

Worst case scenario:

Our lipedema could get even more out of control - more weight gain, loss of mobility, loss of energy, more health concerns.

Then who will care for our children, partner with our spouse, visit with our friends?

We all need to take some time for self-care. It doesn't have to be a long amount of time and it doesn't need to cost a lot of money, but it needs to be a priority if we're going to beat this disorder and live our lives to the fullest.

So what can you do to take care of yourself?

1. Ask For Help. Discuss your needs with your spouse. What can they help you with around the house or with the children. If you're a single parent, meet with other single parents through your church or a community event or check out the Meetup website and see what's out there. Single parents can help each other. If you're a single person, discuss your needs with a friend or family member or see if there's a community program to help you with housework, transportation and other issues. There's nothing wrong with asking for help.

2. Support. I love our Facebook groups so much! There's a lot of support for just everyday life. Even though the group is online, I feel so many of these special ladies are my friends. Several ladies just met in person at the first lipedema conference held in Arizona. So make it a point to find support and advice, whether online or in person.

3. Eat right and exercise. I'm guilty of not doing this enough. Before I found out about lipedema I was at the gym every day for two years, living on chicken and broccoli, and got so discouraged with my results. Now that I know about lipedema and how the lymph fluid needs activity in order to move, I know this is important. That's why I'm making a new commitment to eating healthy (my choice is paleo / primal) and exercising 30 minutes every day. The difference is that instead of exercising looking for the end result (weight loss and, truthfully, wanting to look hot!) my goals are to gain strength and slow the progression of the disorder.

Let's make a commitment, today, right now, not next week or next month or next year, to putting these steps in practice and not finding the time but MAKING the time to take care of ourselves.

If you don't take care of yourself, who will?

Yvonne van Stigt researches how to defeat lipedema

By Tatjana van der Krabben

October 2012 I attended a conference on lipedema. A very energetic lady delivered a lecture with a fellow researcher. I struggled to follow her on the topic of the leaky gut – then an only vaguely familiar concept to me. She got me when she mentioned low-grade inflammation related to lipedema. Bam! Yes, everyone, less than a year ago that was still news and at Lipese we were searching high and low for more information on the subject. And there was Yvonne van Stigt, not only on board with that, but also touching upon a sore point as how to fight the inflammation: with food - our enemy, our Nemesis. Van Stigt is a Paleo advocate, but a change of diet is only part of what she has to say. I recently had the honor of interviewing her on her views and plans.

Van Stigt has firsthand experience with lipedema
Yvonne van Stigt, specialized in clinical psycho neuro immunology, has an interesting history. She had, as she puts it, lipedema and started to study clinical psycho neuro immunology to help heal herself, as she couldn’t find the help she felt she needed in the traditional medical field. Unfortunately, her claim to have healed from lipedema sometimes yields adverse reactions. It is, however, not as controversial as it seems. She is currently free of symptoms. She described her legs as pain-free, no longer swollen, of a more modest size, but hardly perfect. Being symptom-free does not equal killer legs, unfortunately. I’ve met others coming pretty darn close to being free of symptoms. So her claim doesn’t offend me. More so, I find it inspirational.

Clinical psycho neuro immunology
Clinical psycho neuro immunology is described by Van Stigt as ‘system thinking’. Finding a correlation does not suffice: clinical psycho neuro immunology seeks to understand the underlying processes. When you hear her string her theories it’s like listening to someone describing domino chain reactions, one stone after the other going, coming full circle in the end.

When treating patients she lets them fill out a questionnaire first. During the initial session she observes people and goes over the questionnaire. She provides them with a set of rules regarding diet and exercise. Generally, the younger people change their habits, the faster and the better the result. In case of persisting health issues there may be (some) irreversible damage. She also says 75% can be sufficiently helped with these guidelines only. About 25 percent needs additional tests. A blood test seems like the next step, but Van Stigt isn’t necessarily keen on standard blood tests. “For instance: just because the blood has high levels of a vitamin, doesn’t mean there is no shortage on a cellular level. A blood test doesn’t tell that.” Instead, Van Stigt also uses urine tests or, when testing blood, zooms in on the red blood cell.

Thinking outside the box
Although she continuously speaks of causes for lipedema and doing something about it, she acknowledges it’s genetic. “A good genetic package would have left you with a solid foundation of muscle, naturally capable of burning fat. When you have lipedema, you lack these genetic benefits, making it challenging to burn fat.”

She doesn’t believe it’s hormones only. Like many of us already experienced, the early onset can predate puberty. Van Stigt identifies three triggers: stress, hormones and the immune system. Which one will tip you over the edge and will bring on obvious lipedema signs, is personal. Which triggers will continue to haunt you with symptoms is personal as well. This rules out a standard approach for each and all. “After the balance is gone and your poor genetic package is becoming a factor, your body reacts with a survival strategy,” explains Van Stigt. “This could be, for instance, diabetes, fibromyalgia or lipedema.” Lipedema here qualifies as a survival strategy, because the body is looking for a way to cope with the lack of balance. In case of lipedema, the body has issues disposing of toxicity. The lymph shutting down is a strategy of the body to prevent toxins from reaching vital organs via the lymph circulation, but it shutting down also hinders the disposing of the toxins. This also explains why, when reducing toxicity levels, the lymph start to function better, unlike for those with lymphedema. Technically, the lymph can do the job, provided it hasn’t gotten damaged over time.

As for treatment, Van Stigt works closely with a gynecologist who tests hormone levels. Bio-identical hormones are recommended when deficiencies turn up. To state the obvious: that would not be a deficiency of estrogen. Mostly, in case of lipedema, there’s estrogen dominance. As for the immune system – it’s often under pressure because of a poor diet. “Modern eating habits are poor eating habits by definition”, she says. Van Stigt, being a Paleo advocate, does sympathize with those dreading the transition to a different lifestyle, although she wouldn’t want it any other way for herself, knowing the consequences. “Commonly it takes 7-10 days to adjust to the changes. After that, you already start experiencing the benefits, which usually acts as a great incentive.”

Although not focusing exclusively on lipedema, it’s obvious she’s passionate when it comes to fighting this condition. She now has her heart set on a 10 day therapeutic retreat for lipedema patients coming winter. Van Stigt wants to give people all the tools and help them to learn to eat differently, safely start up with special exercise and stimulate the lymph through osteopathy, among other. She’s eager to prove that’s all it takes to get properly started with the rest of a better, more comfortable life.

I was jumping on my seat when I found out. I can’t make it on this trip, but someone out there wants to do something that could be the closest thing to a clinical trial that we currently have regarding lipedema, exercise and diet. To be continued!

Obviously, I’ve given a very brief and incomplete description of Yvonne van Stigt’s work. Her new book, which will describe her theories and findings regarding lipedema in great detail, is due mid-November in the Netherlands. An English translation will follow. I’ll keep you posted.

 

Is a high protein diet adding to lymph problems?

By Tatjana van der Krabben
In our efforts to manage our weight, we eventually leaned towards high-protein, low-carb. We are also picky about the protein: low in or, if possible, free of toxins and from organically raised and/or grass-fed animals. Polluted foods only lead to inflammation. But sometimes we also hear advice against a high-protein diet. It supposedly adds to the buildup of protein in the lymph fluid, further hindering the lymph flow.

I had to expand my search a little and found more information through lymphedema. We do have a thing or two in common, like lymph fluid high in protein.

Dr. Vodder’s Manual Lymph Drainage: A Practical Guide by H. Wittlinger, D. Wittlinger, A. Wittlinger and M. Wittlinger (2011) talks elaborately about nutrients being stored in our connective tissue. The short version, as quoted from Vodder (2005) is this: “All protein molecules leave the bloodstream within 24-48 hours, enter the connective tissue, and most of them are returned to the bloodstream via the lymphathic vascular system, so the term “protein circulation” is justified.”

Wittlinger et al continue to explain the problem with high levels of protein: “..the protein circulation needs a properly functioning lymphatic vascular system: otherwise there will be blockages and build-ups in the connective tissue, that is, the concentration of protein in the tissue will rise. This will lead to chronic inflammation, which in its turn will result in cell proliferation (fibrosis).”

Protein in your diet is blamed as a contributing factor: “If the blood protein concentration is too high, e.g., due to a protein-rich meal, various mechanisms of the endothelial cells of the blood capillaries will cause the protein to be released into the tissue in order to maintain homeostasis.”

By implying that molecules of the protein you digest go to the connective tissue via the bloodstream and are next absorbed by the lymphatic system, I get that some warn against high-protein diets.

There are two sides here. The other side being that the protein you digest does not become part of your lymphatic fluid:

Ray (2004) says this on the subject: “Although lymph fluid is high in protein, the protein is derived from the blood, not directly from the diet. Consuming less protein does not affect lymphedema and can have serious health consequences.” (http://www.amylhwilliams.com/Lymphedema.pdf)

Cornely (2006) quoting Földi and Földi says: “Lymphatic edema is rich in protein and arises from the reduced transport capacity of the lymphatic system despite normal protein load.” And: “Lymph transported from the periphery to the center in this semicircular system essentially consists of products which cannot be transported via the venous system. Among these products plasma proteins represent the main protein load.” (http://link.springer.com/content/pdf/10.1007/3-540-28043-X_3.pdf#page-1)

Two views and a need for useful advice on protein-intake
The Recommended Dietary Allowance (RDA) for protein for the average, sedentary adult is at 0.8 grams per kilogram of body weight. Recommended amounts found online vary greatly. Depending on age, gender and lifestyle (bodybuilding, attempting weight loss, Paleo, food pyramid etc.). So, your recommended protein-intake, when assuming this element of your diet does not interfere with your lymphatic system, depends on the health or diet guru of your choice.

When assuming dr. Vodder and those who follow his teachings, Wittlinger et al, are correct, this does have potential implications for your protein-intake. When you look at what the Wittlinger Lymphedema Clinic does recommend, you find a food pyramid style plan: http://www.lymphedema-clinic.com/oedemarten/5-saeulen-der-behandlung/ernaehrung.html
The base is fruit and veg and second are sources of protein. Yes, second. The single largest source of nutrition would have to be protein-based.

The Wittlinger Lymphedema Clinic even speaks of a minimum protein demand of 0,6 grams per kilogram of body weight. Their example of a 65 kilogram or 143,3 pound woman states she should have 39 grams of protein minimum. Since weighing 143 pounds would be something many of us can’t image ever weighing (again) and the sum of 0,6 grams per kilogram would add up unrealistically for many, I’ve contacted the Wittlinger Lymphedema Clinic to elaborate on their recommended diet.

Dr. Christine Heim, Director of the Dr. Vodder Akademie Walchsee, was kind enough to explain in more detail.

The 0,6 grams of protein per kilogram is related to a normal body weight. For your point of reference it is best to calculate from a normal height: you don’t add up 0,6 grams per kilogram indefinitely. That would imply that if you are a bit taller than average you would need more than the 39 grams from the example.

To my question what the maximum protein-intake should be, she replied that would be 1 gram per kilogram of body weight, related to a normal body weight. This allows for a substantial protein-intake.

So, whether you do or do not believe your diet contributes to your blood protein levels, it takes a lot before your protein intake is too high. It also doesn’t hurt to take a peek at the base of their pyramid: fresh veggies and fruit. Fruit has issues with (blood) sugar, but it’s also the thought that counts here. Grains and even more really starchy foods and sweets should be consumed in smallest quantities in comparison. First and foremost you need to work on your veg (and fruit) and protein intake. A modern perspective that doesn’t clash with the average dietary recommendations going round among lipedema patients. That’s reassuring.

Some have translated the potential impact of protein-intake into a low-protein recommendation. As you can read above, this is not what those following Vodder imply.  A word of caution: Dawson and Pillar (2011) state that low-protein diets are dangerous and quote Mahan and Escott-Stump (2007): “Proteinaceous foods are high in amino acids that are essential for the body. If protein is not acquired in the diet, the body begins to catabolise its own protein stores, resulting in muscle wastage and malnourishment.”

Results from my Whole 25

By Christina Routon

I did not complete the Whole 30 challenge. I got through day 25 and I'd had enough.

The Whole 30 is not easy to complete. It wasn't just about giving up the grains and the sugar as I'd already been wheat-free and sugar-free for some time. It was actually harder for me giving up the dairy - the cheese in my eggs, the cream in my coffee. To do this takes planning and preparation, and it seemed the more the month went on it just became more difficult and time consuming.

I learned a lot about myself, and this trumps any results I had with weight loss or inches lost. I learned about emotional attachments I have to food. After a rough day, I wanted pizza and ice cream. The last thing I wanted to do was go home to chicken and vegetables and spend another hour in the kitchen prepping for the next day. However, I know that food will not make me feel better and I believe doing this is helping me break those attachments.

Since going without any type of sugar or sugar substitute for almost a month, now that I can use the sweetener again I find my taste has changed. Before I used about four packets of Splenda in a cup of coffee or tea, trying to mimic the sweet taste of sugar. Now, I may use one and it tastes fine.

I was surprised at how many foods contain sugar, wheat, and other additives. I will definitely continue to read labels and make the best choices possible when buying groceries.

I've learned a new appreciation for vegetables, including vegetables I never would have tried before. My husband makes excellent mashed cauliflower. I love the recipe for jicama home fries and chocolate chili from the cookbook, Well Fed. I've eaten sweet potatoes, butternut and spaghetti squash, broccoli, cauliflower, jicama and so many other vegetables I can't remember. I've learned new ways of cooking and new ways of seasoning food to make it taste good and be interesting every day. I've learned shortcuts such as prepping vegetables ahead of time in containers, pre-cooking ground meat to use in a variety of recipes and using my slow cooker for a roast or chicken. I've made homemade mayo and salad dressing. It was definitely an experience.

As for physical results, I lost two pounds. I'd hoped to lose four or five, but I know lipedema slows weight loss and as I was already wheat-free and sugar-free I didn't expect to lose as much as those going from a typical SAD diet to a Whole 30 plan. I did lose inches, mostly on my arms. I did some exercise, not as much as I'd liked, but I plan to include healthy movement into my days. It may not be a scheduled exercise program, but I am going to do something to move my body and keep it healthy.

I did notice recently my calves feel softer than they did before. I've been using lotion on my legs and for a long time my calves had felt hard. This is important, because lipedema fat on the calves tends to get hard (fibrotic) and lumpy and this affects the way lymphatic fluid moves through the legs. The fact that my calves are softer and actually jiggle (who would have thought I'd be happy to have more jiggly fat?) tells me my body is changing, even if I can't see it.

I'm going to continue a more primal style of diet, predominately paleo but including cheese and butter. This is going to be my diet 95 percent of the time. I'm going to include corn on a limited basis, more in the form of corn tortillas and grits than whole kernal corn, and until Stevia is a bit more affordable I'm going to have to stick with Splenda as a sweetener, if I use one at all. I'm learning more about Omega 3 and Omega 6 fats as well, which I'll share soon, and plan to add more Omega 3 fats to my diet.

I'll probably do another Whole 30 in the fall, maybe around August or September. I'm glad I did it. I learned a lot for my first go round and I'm looking forward to seeing what changes take place as the year progresses.

My first Whole 30 - Week 1

By Christina Routon

For the January Lifestyle Challenge I chose to start a paleo diet. I went all in by following a program called Whole 30. You can find out more about this plan at Whole9Life and check out the following websites for recipes:

The Clothes Make the Girl (I'm also using her cookbook, Well Fed)
Nom Nom Paleo

Whole 30 is an elimination plan (no grains, legumes, dairy (except ghee and eggs), sweeteners of any kind) and it also includes other rules such as:

No "paleo" treats
No "paleo-ifying" regular foods - no "paleo bread", etc.

This means my gluten-free pancakes with sugar-free syrup are out, as well as the corn tortillas and grits, peanut butter, and other things I was still eating. Also, all sweeteners, including stevia, Splenda, Truvia, agave - are out. It's been a learning curve, but I'm doing okay. I'm not having the cravings / headaches other people have talked about during the Whole30 timeline as I'd already gone wheat-free / sugar-free.

Here are a few things I've learned this week. The lessons should apply to any type of plan you're doing.

Plan ahead - This is crucial. I can't just run out and grab something to eat for lunch or toss something together for dinner. There has to be a plan in place and food has to be ready ahead of time.

Keep it simple - Don't try to make meals that consume too much time in the kitchen. It's been a week and I already feel as if I'm in kitchen jail. I do try to cook ahead as Melissa recommends in her book, Well Fed, but I end up cooking for about two days ahead instead of the week. One of my rules for recipes - must include items found in my local grocery store. The only item I bought at a health-food store was Coconut Aminos.

Get family participation - My husband is doing this with me as a show of support. It's always nice to have support and participation. Our son still lives with us, but he's been buying his own food.

It doesn't have to be expensive - Yes, I know a lot of paleo and primal sites want you to buy grass-fed beef and free-range chicken and organic vegetables. I can't afford those at this point in time. I buy what I can, even if it's not perfect. I do check the dirty dozen list to see if the vegetables / fruit should be bought organic, though, and if I can I buy them organic or do without. I started buying ingredients and testing recipes during the weeks leading to Christmas, just to test them out. So far, I've only exceeded my weekly grocery budget twice in about three weeks, and then by $20.

I'm not weighing until the end of January, but I do have my weight and measurements from the end of December to compare. However, I'm not doing this for weight loss. As many of you know, with lipedema we're not really trying to "lose weight". We're trying to fight inflammation. Some of what I'm doing may result in weight loss, but I'm not expecting my legs to change overnight. I'm not expecting to drop a significant amount of weight. My reason for following this plan in January and continuing with the paleo / primal diet is to reduce inflammation I already have and prevent any more from occurring.

Starting today, January 7, I'm adding exercise back into my routine as well.

How are you doing on your January challenge?

January Lifestyle Challenge

By Stefanie Gwinn-Vega and Tatjana van der Krabben

January Lifestyle Challenge (http://www.lipese.com/lifestyle-challenge.html) is about putting more thought than usual into your eating habits. What do you like? Could it be you like it because it’s addictive? Are you (already) enjoying healthy food? Does your mood influence your serving sizes? Do you feel like change? What could you change? It’s about aiming for a healthy lifestyle, not a quick, unhealthy diet program that promises miracles.

Below you find a description of a few popular low-carb diets. They are not specifically designed for people with lipedema, but have gained popularity among women with lipedema. Also, research suggests low-carb is recommended in case of lipedema. Low-carb and no sugar are the elements that keep returning in official lipedema diets. The descriptions of the diets are strictly informative and the menu with each serves as an inspiration or perhaps ‘food for thought’. LIPESE does not endorse a specific diet.

If you feel like getting started and would like some support? On Facebook Lipedema/Lipoedema Group of the United States (private group) and Lipedema Unite (open group) have members looking for "buddies" to take on the challenge together. Not on Facebook and still interested in teaming up with someone? Drop us a line via info@lipese.com . We're happy to help you find a buddy.

South Beach Diet

Phase 1 is designed to stabilize your blood-sugar levels and eliminate cravings for sugary foods and refined starches. This phase is for 14 days.
A sample day would look something like this:

Breakfast
6 oz tomato juice
Scrambled eggs with fresh herbs and mushrooms
2 slices of Canadian bacon
Decaffeinated coffee or tea with nonfat milk and sugar substitute

Midmorning snack
1 part-skim mozzarella cheese stick

Lunch
Chicken Caesar salad (no croutons)

Midafternoon snack
½ cup low-fat cottage cheese / Greek yogurt with added veggies

Dinner
Mahi mahi

Oven-roasted vegetables or salad
2 tbsp balsamic vinaigrette or low-sugar prepared dressing

Dessert
Lemon zest ricotta crème

Phase 2 of South Beach Diet you’ll gradually re-introduce nutritious and delicious foods, including fruits, whole grains and some additional vegetables. A sample day would look like this:

Breakfast
1 cup of fresh strawberries
Oatmeal (1/2 cup old-fashioned oatmeal with walnuts)
Decaffeinated coffee or tea

Midmorning snack
1 hardboiled egg

Lunch
Mediterranean chicken salad

Mid-afternoon snack
Fresh pear with Laughing Cow light cheese

Dinner
Spinach-stuffed salmon
Vegetable medley
Tossed salad (mixed greens, cucumbers, green peppers and cherry tomatoes)
Olive oil and vinegar to taste

Dessert
Chocolate-dipped strawberries

Atkins diet
Phase 1 of the Atkins diet is called Induction – it’s where you’ll jumpstart your weight loss program. The main focus is on proteins, healthy fats and veggies. A sample menu may look something like this:

Breakfast

3 eggs with 4 slices of bacon

Midmorning snack
Sugar free jello

Lunch
Cheeseburger with sauteed mushrooms (no bun)

Midafternoon snack
Atkins Induction phase bar or shake

Dinner
Grilled shrimp and steak
Salad

Dessert
Sugar free jello with whipped cream

You stay in Induction phase until you get closer to your goal weight - which is a rather alien concept for us: "goal weight". Next you move on to phase 2 which promises continued weight loss, but at a slower rate. You van add nuts, berries and yogurt in this phase.
Atkins has a free app for Android or Apple that helps you track your progress, get info on food, has daily meal plans etc. Useful for those who can use a constant reminder.

Wheat belly Diet
There's only one phase and you never begin to add carbs back in as many of the other diets do. The basic permis is to try to maintain a consistant blood-sugar level. There's no calorie counting or restriction and it's basically carbohydrate-based, as carbs are responsible for the sugar highs and lows. A sample day may look like this:

Breakfast
Mexican omlet with sausage, peppers, mushrooms, full fat cheese and salsa
Coffee or tea with heavy cream / half & half

Midmorning snack
Almond flax muffin in a minute

Lunch
Grilles chicken salad with cranberries and walnuts

Midafternoon snack
Greek yogurt with a dozen raspberries

Dinner
Pizza with cheese crust, with whatever topping you desire in meat and veggie category

Dessert
Almond flour chocolate chip cookies

Paleo Diet
There are no phases in this diet as they focus on eating from the foodgroups our hunter-gatherer ancestors would have thrived on during the Paleolithic era, the time period from about 2.6 million years ago to the beginning of the agricultural revolution, about 10,000 years ago. These foods include fresh meats (preferably grass-produced or free-ranging beef, pork, lamb, poultry, and game meat if you can get it), fish, seafood, fresh fruits, vegetables, seeds, nuts and healthy oils (olive, coconut, avocado, macademia, walnut and flaxseed). Dairy products, cereal grains, legumes, refined sugar and processed foods were not part of out ancestral menu. A sample menu looks something like this:

Breakfast
Sweet potato hash with bacon

Midmorning snack
Fruit salad

Lunch
Chicken cutlets with olives and tomatoes

Midafternoon snack
Jerky and fruit

Dinner:
Coconut shrimp and basil spinach

Dessert
Paleo pumpkin muffins

Primal diet
Primal is similar to Paleo diet, but they do differ in certain areas. Primal is lower carb as fruit is limited and more seasonal and even "natural sugar" is frowned upon. Dairy products are more accepted on the Primal plan as well. A sample menu would look something like this:

Breakfast:
Omlet loaded with meats and cheese & coffee with cream

Midmorning snack
Almonds

Lunch
Chef's salad

Midafternoon snack
Avocado

Dinner:
Grilled steak with veggie of your choice & a glass of wine

Dessert
Serving of blue berries in cream

Tim Ferris Four Hour Body Diet
This is considered a slow-carb diet rather than a low-carb diet. The rules are simple: avoid white bread, white rice, potatoes and other white carbs, as well as whole grains and steel-cut oats - which are often promoted as healthy carbs due to their high fiber content. His plan outlaws all fruit and dairy (except cottage cheese which he says speeds up fat loss, while other dairy slows it) and involves a one "all-you-can-eat-day" a week. Anything goes on this prescheduled day (however, I personally  would stay away from wheat and sugar as both cause inflammation). Ferris also suggests eating the same small meals over and over again. A menu could look like this:

Breakfast
Spinach quiche

Midmorning snack
Avocado and nuts

Lunch
Chicken and black bean lettuce wraps

Midafternoon snack
Hard boiled eggs

Dinner
Beaf stew with pinto beans and kale

Dessert
Cottage cheese with cinnamon 

Lipedema diets

By Tatjana van der Krabben

Lipedema is not caused by overeating. All the same a diet is mostly recommended. Either because your doctor assumes you’re overeating after all or because of genuine concern the lipedema might cascade. Diets are usually associated with limiting calories. The nasty bit with lipedema is that you can still gain on the areas affected by lipedema despite pretty much starving yourself. Latest insights suggest what you eat is key. This blog touches upon diets and dietary guidelines specifically recommended in case of lipedema by doctors or other experts well informed on lipedema. The trick question is always: will it get me slim ALL OVER, legs included? I’m not giving the following diets a mention for that, since general consensus is that’s not (entirely) possible. The idea is to stop inflammation and further weight gain (and lose a bit if you’re lucky). Many of these diets have a claim related to inflammation. It’s most unlikely that this overview is complete: it’s quite possible other clinics, researchers or doctors have come up with dietary recommendations or a complete program as well.

Probably the most familiar in English speaking parts is the Rare Adipose Disease (RAD) diet. It was developed by dr. Herbst, endocrinologist (University of California, San Diego) and specialized in disorders related to abnormal fat deposits. Its purpose is to reduce inflammation and avoid further weight gain. The essentials are as follows: lower consumption of pasteurized dairy, animal protein, fats, simple sugars, carb, salt and wheat or processed flour products. Focus should be on organic fruits, veg, whole grains and healthy proteins. Foods high in chemicals and additives are also to be avoided. Regular liquid meals are suggested for easy digestion.

Also looked at by lipedema patients is the Diet for Lymphoedema by Juliet George, from the Poppy Lane Lymphoedema Clinic, Australia. It claims to have special focus on stimulating the lymphatic system and the body’s secondary systems with reference to blood circulation and wandering macrophages. This diet does allow for more animal protein as in meat and cottage cheese. Approved food items or ingredients are divided over 2 lists. From the one list you can choose 1 item, from the other 4 to combine all into a meal. This in order to create a 1:4 ratio of acid/alkaline foods.

At the 2012 Nederlandse Lipoedeemdag (Dutch Lipedema Day) the Paleo diet was recommended for lipedema by two researchers (Y. van Stigt  &  H. van Egmond). To state the obvious: the Paleo diet was never specifically designed for lipedema. Paleo, originally promoted by dr. Loren Cordain, blames modern diet for autoimmune disease and encourages people to return to the (unprocessed) food items we used to digest. So, no dairy, grains, processed foods and sugars, legumes, starches or alcohol. But you can have fruits, vegetables, lean meats, seafood, nuts & seeds and healthy fats.  Whether or not lipedema is truly autoimmune is an unanswered question, but the idea to support your immune system through diet is appealing.

Paleo has ways been explained and reinvented in different ways. Some advocates also allow for, for instance, bacon, which doesn’t fall into the lean meat category, or some (raw) dairy. A more well known variation is The Primal Blueprint (Mark Sisson). Guidelines include advice on exercise inspired on cave man lifestyle and getting enough sleep.

I’ve also looked into diet suggestions in Germany. At this point I don’t have much detail. I mostly found a debate on protein: do or don’t? Dr. Weiss, for instance, suggests a complete treatment including a change of diet. It should be limited in both fat and protein, since the lipedema body is already burdened by those. The rest is in a book I don’t have. The Földi Klinik, also informed on lipedema, doesn’t give specifics on their page, but dr. Martin from this clinic explicitly disagrees with that approach on a forum. He insisted the body needs protein. So much for the tip of the German iceberg regarding lipedema diets.

Different diets, different focus and, unfortunately, some contradiction. Yet, the diets I managed to look at in more detail have a few things in common: an aversion to wheat/starchy foods and sugar. They also aim at keeping your blood sugar stable. If you only look at those factors you already get issues with prepackaged off-shelf food, which explains the abundant exchange of recipes on lipedema websites and chat groups.  

None of the diets above were tested on lipedema patients in clinical trials. This blog does not endorse a particular diet, but merely wishes to inform which diets are currently recommended by some medical professionals. Through Lipese we do encourage people with lipedema to put thought into their lifestyle. When continuously gaining, your mobility suffers and literature suggests potentially lower pain levels could be achieved through a change of lifestyle (diet, supplements and exercise). Hence January Lifestyle Challenge (http://www.lipese.com/lifestyle-challenge.html). Starting out can be difficult, but it becomes easier when you know you’re not alone. When considering making a change to your diet, exercise regime and/or considering taking supplements, please contact your healthcare professional first.

The medical information in this blog is provided as an information source only, and is not to be used or relied on for any diagnostic or treatment purposes. This blog should not be used as a substitute for professional diagnosis or treatment. Please consult your healthcare provider before making any healthcare decisions or guidance for a specific medical condition.