Ketogenic Diets and Lipedema: Apply Caution

Sculpture by Madeleine-Marie Gautier
Be smart; do your research before jumping on the ketogenic bandwagon

One of the biggest trends in lipedema treatment world right now is the ketogenic diet. Folks in lipedema communities are all a-flutter over it, considering it practically a cure. There are tons of sessions about ketogenic diets at the lipedema conferences and it's being heavily promoted on lipedema websites and support groups.

I have decidedly mixed feelings about this. On the one hand, I'm a big believer in people being in charge of their own healthcare, and if this is something they want to try, it's okay with me. It's good to consider different therapeutic modalities. On the other hand, it bothers me to see people promoting it so strongly online, as if it is a proven therapy, as if it is a cure. It's NOT.

In fact, we have little actual evidence about ketogenic diets for lipedema, mostly just the word of a few doctors and therapists who believe it is "the answer." We have the stories of some people who are in the honeymoon phase of weight loss on the diet. We have no long-term evidence that it helps lipedema.

What is a Ketogenic Diet?

A ketogenic diet is a dietary approach that promotes a high fat intake and a moderate protein intake, while keeping carbohydrate intake to a bare minimum (no more than 50g per day). In other words, you can have plenty of meats, fats, and low-carb vegetables, but grains, fruits, and higher-carb veggies are not allowed. You can have lots of bacon, steak, and nuts but no rice, bread, pasta, peas, corn, apples, grapes, pears, or bananas, etc.

It's a nutritional plan designed to trigger ketosis in your body. Your body uses glucose for energy, which is largely created from the carbs you eat and then stored as glycogen. If you eliminate carbs from your diet, your body uses up its stores of glycogen, runs out of energy, and needs to find a replacement. So it turns to its stores of body fat and starts consuming them. The by-product of this process is ketones.

Ketosis (ketones in your system) results from the burning of fat for energy when the intake of other energy (carbohydrates) is too low to supply the body's needs. To see if you are spilling ketones in your urine, you can buy testing strips from most pharmacies. You pee on them and they will tell you if you are in ketosis and if so, how much. The aim of the diet is to get you into major ketosis territory so your body will hopefully burn up the lipedemic fat.

Ketogenic diets do very well at producing a quick and very strong initial weight loss. Much of it is water weight but muscle and fat is also burned, leading to more weight loss, at least for a while. Some people report feeling marvelous on it, while others report feeling terrible (the "keto flu"). Sometimes this effect is temporary (the first few weeks) and sometimes it never resolves.

Reservations About Ketogenic Diets

When looked at historically, it can be seen that dietary approaches rotate in popularity. Vegetarian, vegan, alkaline, low-fat, low-carb, no grain, no carb, Paleo, eating "clean" ─ all are dieting/weight loss trends that have cycled in and out of popularity over the years. None show any better long-term results than the others.

If you lower calories, your body will initially lose weight for a while, and then it will slowly adapt its metabolism to the new lower intake and the weight loss slows down and stops, then starts reversing. Sometimes you can overcome these plateaus for a while but nearly always the weight eventually returns, often with friends. There are a few people who manage to sustain large weight losses over many years, but they are statistical outliers, and many do it at the price of eating-disordered behaviors around caloric intake and exercise.

Remember that there is NO research proving improvement of lipedema with a ketogenic diet. Nor is there any research proving long-term permanent weight loss with ketogenic diets. The current push for ketogenic diets is the lipedema and medical community pretending to be size-friendly and pro-health but still exhibiting an underlying diet and weight loss mentality. The paradigm is just too ingrained in them to let it go:

• Sure, we know that lipedema is really not your fault ─ but don't you dare let up on your relentless focus on dieting and exercise or you'll blow up like a balloon! 
• Sure, it's not just a matter of restricting calories ─ but you really should restrict certain toxic foods. If you don't, you'll make your lipedema worse and you'll end up in a wheelchair!

Caregivers and far too many patients are still stuck in the same old guilt/shame/scare/restrict dieting mode, even if they no longer call it a diet. They may call it a "lifestyle change" but it really is just another diet. 

For a while it was an anti-inflammatory diet that was supposed to lessen the effect of lipedema. Now that has started to go out of fashion and it's all about the ketogenic diet. Pretty soon the ketogenic diet will go out of fashion too and something new will be "the" fix. But whatever the latest trendy approach, it's all still dieting, bottom line.

That's not to say that you should just "let yourself go." There's nothing wrong with focusing on healthy habits and nutrient-dense foods. No one is saying that people with lipedema should pay no attention to their health. You don't want to exacerbate the lipedema. But we do need to be cautious not to let that care become part of the Diet Fixation that is so prevalent in our society.

Be especially leery of nutritional approaches that take out entire food groups, that are highly restrictive in intake, that cast foods into "good" and "bad" categories. Foods aren't moral or immoral; they have no value judgment. Some are healthier for you than others, some work better with your particular body than others, but everyone is an individual. Sweeping dietary restrictions don't generally work very well for groups. Moderation and variety seems to be the best keys.

Remember the profit motive of this latest trendy diet. Although the "keto experts" are well-meaning, the patient often ends up paying hefty amounts for advice. And the so-called experts usually spin their approach into a whole cottage industry that makes them all kinds of money. Keto lifestyle coaches abound online these days and have many "packages" available for lifestyle advice. All of it is for a profit. It colors everything they say. Even caregivers who consider themselves neutral often have financial interests in the weight loss industry that influence their views. View everything with a giant grain of salt.

Look beyond the salesmanship, the scare tactics, and the short-term personal testimonials. Ask what real evidence we have on ketogenic diets. Keep asking about this on lipedema groups promoting ketogenic diets and listen to the deafening silence or culture of denial. It's very revealing.

What Does the Research Say?

Bottom line, there does not seem to be any studies on ketogenic diets and lipedema. 

All the claims online about how effective ketogenic diets are for lipedema seem to come from anecdotal stories. A few isolated case reports exist, which are essentially anecdotal evidence too. Although we should not dismiss anecdotal evidence out of hand, neither should we consider such a therapy proven. It's not proven at all.

The ketogenic diet does have some uses in fields other than lipedema. It's important not to dismiss it completely. It was first used in 1920 to help people with epilepsy. It has been shown to be extremely helpful in children and adults who experience chronic severe seizures ─ but perhaps at a price. There seems to be some cognitive decline in young children on a ketogenic diet, but whether that's worsened because of the repeated seizures or whether a combination of repeated seizures and a ketogenic diet makes things worse is unknown.

The ketogenic diet has also been shown in some limited research to be helpful against certain types of brain tumors (glioblastoma). It's not a cure, but it may help at least delay progression. However, although there is lots of speculation and pressure for its use with other cancers, there is no conclusive proof of its utility on other cancers at this time.

A low-to-moderate carbohydrate diet has been shown to improve certain cardiac risk factors in newly diagnosed diabetics, but follow-up is generally only about a year, not long enough to judge its long-term usefulness. Still, it may well lower insulin levels long-term, so that is potentially a benefit to some.

However, while ketogenic diets typically improve triglycerides, HDL cholesterol, and blood sugar temporarily, some data suggests they may worsen LDL cholesterol. Whether that is truly risky or not is unclear.

Furthermore, many people report significant G.I. issues like nausea, vomiting, and constipation with a ketogenic diet. Other potential risks may include kidney stones or other kidney problems, electrolyte imbalances, dehydration, vitamin deficiencies, muscle loss, leg cramps, and decreased bone density. Bad breath, fatigue, and sleep problems have also been reported. While a ketogenic diet is probably not super-risky, neither is it without harm in the literature. Many dieticians recommend against it.

Ketogenic diets get good buzz because there are often significant drops in weight in the first few weeks of the diet. This is largely due to fluid loss, not fat loss. Since women with lipedema often retain serious fluid in their bodies, they can experience really big drops in weight ─ at first. But will it last? As two dietitians note in an article on the keto diet:

"As you limit carbohydrates, your body produces less insulin, and glycogen stores (how carbs are stored) in the muscles and liver are depleted. For every 1 gram of glycogen that's depleted, you lose about 3 grams of water." This causes the kidneys to flush out more water, and along with it, electrolytes your body needs like magnesium, calcium, sodium, and potassium. "Imbalanced electrolytes can lead to muscle cramps, irregular heartbeat, fatigue, cognitive distortions, and lack of body temperature control," Turoff says...

"I wish people knew that the weight loss they will initially experience on this diet is largely due to water loss," Brown says. That means you're most likely not actually losing fat in the first couple of weeks, but instead losing water that will come back in the form of glycogen stores if and when you start eating carbs again.

As far as weight loss goes, a meta-analysis of a number of studies found that ketogenic diets resulted in greater weight loss than low-fat diets ─ but a review of this meta-analysis noted that the difference was only about 1 kg (2.2 pounds), and once the participants reached the 24 month mark, any significant difference between groups disappeared. Not exactly impressive results.

This is typical of nearly all weight loss research. There is an initial period of significant weight loss, lasting anywhere from a few months to around 1-2 years, and then the weight is slowly regained. Often the person regains to a higher weight than their starting weight. The question becomes whether people are better off for having lost the weight and regained it, or if they would have been better off being stable at a higher weight.

Reviews note over and over that a ketogenic diet is generally quite difficult to sustain long-term. Many "long-term" ketogenic studies actually only last 6 months to a year. Drop-out rates are extremely high because it is such a hard diet to follow, and this makes it difficult to interpret what data there is.

Conclusion

One of the trendiest things in lipedema care these days is the ketogenic diet. It is routinely being promoted as a "must try" fix. Physically, it rewards participants with a large quick weight loss, and emotionally, it gives a feeling of control over the uncontrollable. People are glad to at least be doing something in hopes that it will help. It's understandable that it's so appealing to many and has caught on so quickly. But the reality is that it's just another unproven diet fad, cycling around for another turn on the Diet Wheel of Frustration.

That's not to say that the ketogenic diet is never useful. Clearly, it has been very useful in those with serious seizure disorders. But for lipedema? That is completely unproven at this point.

But I'm not going to tell you to not do this diet. You control your own body and your own healthcare decisions. I'm not the Diet Mafia. If you want to do the ketogenic diet, go right ahead. My advice if you try it is to avoid extremism, consult a dietitian so you do it more wisely, take supplements, drink lots of water, and stay flexible. Give it your best shot but don't feel bad if you find it difficult to sustain this diet or if you don't get the long-term results you were hoping for. Lots of other people have had similar issues.

Many people try the ketogenic diet for a while, lose fairly significant amounts of weight pretty quickly, sometimes even from the legs ─ then find the weight comes back no matter what they do. Or they simply cannot live with the extremes of the diet and stop following it after a while because it is so difficult to sustain long-term.

That was pretty much my experience with the ketogenic diet, years ago as a young adult when I was still riding the diet merry-go-round. I lost 50 lbs. on it in six months, but in the end began gaining weight uncontrollably even while still on the diet. Eventually I found it to be simply unsustainable and stopped. I found that after my ketogenic diet, I actually had more lipedemic fat (though I didn't know what to call it then) than when I started, particularly around my belly. That really turned me off of it. It had good initial results but they didn't last any better than any other diet or "lifestyle change" I did. In fact, it made things worse in the long run.

That was my last really big diet. After that, I turned to the Health At Every Size approach and stopped yo-yo dieting. I found I was so much healthier in my food choices, my lab numbers improved, my weight stabilized, and I just FELT so much better, both physically and emotionally. I tried to emphasize more exercise and eat moderately but didn't guilt myself too much about it. Everything in moderation ─ including moderation ─ became my motto.

Some people swear by the ketogenic diet, and if it works long-term for you, more power to you. But stop promoting it as if it has been proven to be a cure for lipedema. It hasn't. It hasn't been shown to result in long-term weight loss either. You can mention to others that you are trying it, you can talk about the pluses and minuses, you can share your experience with it, but please refrain from making unproven claims and stop pressuring other people to try it.

Intuitive Eating and Postpartum Weight

There is intense pressure from some care providers to lose pregnancy weight gain after the baby is born. This is because many women do retain weight from pregnancy long-term and never go back to their pre-pregnancy weight, resulting in a permanent net gain.

However, the best way to return to pre-pregnancy weight is hotly debated. This study finds that Intuitive Eating works better than rigid dieting rules. This is very compatible with Health At Every Size® practices and a much more sane way to live, especially for new mothers.



Reference

Matern Child Health J. 2017 Feb 7. doi: 10.1007/s10995-017-2281-4. [Epub ahead of print] The Relationship Between Intuitive Eating and Postpartum Weight Loss.Leahy K, Berlin KS, Banks  GG, Bachman J. PMID: 28176035 DOI: 10.1007/s10995-017-2281-4

Objective Postpartum weight loss is challenging for new mothers who report limited time and difficulties following traditional weight loss methods. Intuitive eating (IE) is a behavior that includes eating based on physical hunger and fullness and may have a role in encouraging weight loss. The purpose of this study was to examine the relationship between IE and postpartum weight loss. Methods Women 12-18 months postpartum completed a questionnaire regarding weight changes surrounding pregnancy, exercise, breastfeeding and intuitive eating using the Intuitive Eating Scale. Latent growth curve modeling was utilized to determine the relationship between IE, breastfeeding, weight gain during pregnancy, and postpartum weight trajectories. Results Participants (n = 50) were 28.5 ± 4.9 years old, had an average pre-pregnancy BMI of 26.4 ± 6.8 and the majority were married, and non-Hispanic white. The conditional model revealed that more intuitive eating practices predicted greater postpartum BMI decreases (Est. = -0.10, p < .05) when controlling for breastfeeding duration, exercise duration, and initial BMI and pregnancy BMI changes. Greater pregnancy BMI increases were associated with more rapid postpartum BMI decreases (Est. = -0.34, p < .001) while breastfeeding duration, exercise and initial BMI were not related. Conclusions for Practice Postpartum weight retention is a challenge for many women. Following a more intuitive eating approach to food consumption may encourage postpartum weight loss without the required weighing, measuring, recording and assessing dietary intake that is required of traditional weight loss programs. IE could offer an alternative approach that may be less arduous for new mothers.

Common Sense Prenatal Weight Gain Recommendations for "Obese" Women

The 2009 IOM Guidelines for Prenatal Weight Gain

Coming up with official prenatal weight gain guidelines is difficult. There's always a trade-off involved ─ too much weight gain increases the risk for large babies, but too little increases the risk for small babies.

(The effects of weight gain on cesarean rates and pre-eclampsia are harder to figure out because of multiple variables that influence outcomes, so we will limit our discussion for a moment to the influence of weight gain on fetal outcomes.)

This weight gain trade-off has been particularly difficult to figure out in women of size. We tend to have larger babies on average and a very big weight gain seems to increase fetal size particularly strongly in high-BMI women. Nor do we need to gain extra fat reserves for pregnancy and breastfeeding. As a result, the Institute of Medicine (IOM) recommends less weight gain on average for "obese" women (see chart above).

While I don't hate these recommendations, I do have some concerns with them, particularly for women in the borderline categories (see discussion below). Women in these categories may be particularly at risk for poor outcomes, yet they are given the same stringent guidelines (and are often told to gain even less than the guidelines).

I also question how much control women really have over gestational weight gains. Sure, we have control over how much we eat and exercise, but that impact on gain is fairly minimal. There have been many trials of interventions to help obese women keep their weight gains lower; some have had minimal success (about 5 lbs. difference), but many have made little difference in weight gain and do little to improve other outcomes. Even with the best support, many women of size gain above the guidelines ─ not because they are lazy or out of control, but because the guidelines aren't particularly realistic for them.

I am also concerned about harassment and over-intervention in the pregnancies of women who gain above these recommended ranges. I have heard many stories of women of size who are harassed or even punished with early inductions or planned cesareans because they "gained too much."

So while I agree in general with the IOM that obese women don't need to gain as much weight in pregnancy as other women, I do have some reservations about the IOM guidelines and in particular about how they are implemented. But sadly, even these guidelines are not stringent enough for some providers.

Taking The 2009 Guidelines Even Further

Some caregivers believe the 2009 IOM weight gain goals didn't go far enough for obese women. In recent years, unofficial prenatal weight gain advice has gotten progressively more extreme. I call this the "anorexation" of pregnancy weight gain guidelines.

The following are real-life headlines from media articles over the years. Notice how the headlines have changed. They have gone from "obese women should gain LESS weight".....

...to "obese women should gain NO weight"

....to "obese women should LOSE weight" during pregnancy.

Disturbingly, many experts have taken an extremist tone in the media and sold these draconian measures as a public health imperative, which alarms me greatly. Many news articles have pushed this weight restriction agenda, assuring us that very little gain was perfectly safe and even healthier for the plus-sized mother and her baby. Here are just a couple of examples.

One article about the IOM recommendations prominently featured the following quotes promoting even lower gains in high-BMI women:

"I think 11 to 20 pounds is way too much for an obese woman," said Dr. Thomas Myles, a professor of obstetrics and gynecology at Saint Louis University School of Medicine who was not involved in the current recommendations. "I usually tell my [obese] patients that gaining less than 10 pounds and even losing up to 10 pounds is appropriate, whereas for overweight women, gaining 10 to 15 and even up to 20 pounds is appropriate," Myles said. 

Gaining a little less weight than the recommended amount, especially for overweight and obese women, might be better, [Associate Professor, Dr. Emily] Oken [of Harvard University] said.

Another article promoting zero weight gain in obese women featured the following quote from one of its leading investigators in its study's press release (my emphasis):

It may seem counterintuitive to suggest that women control their weight during pregnancy, but these women are already carrying between 50 and 100 extra pounds — and for them any more weight gain could be very dangerous,” said Vic Stevens, PhD, principal investigator who has studied weight loss and weight maintenance for more than 30 years.

Another recent article quoted Dr. Sigal Klipstein, Chair of the American College of Obstetricians and Gynecologists committee on Medical ethics. Even as she discussed the importance of treating obese women humanely during pregnancy, Dr. Klipstein stated:

Although women should not to try to lose weight during pregnancy, “a woman who weighs 300 pounds shouldn’t gain at all,” Klipstein said. “This is not harmful to the fetus.”

But is it really true that very small or non-existent gains are not harmful?

Risks of Too-Small Gains

Those who suggest that gaining little or no weight is optimal for women of size are ignoring all the contrary research.

A significant amount of research has shown that very low weight gains and/or weight loss during pregnancy in women of size carries real risks, including

• prematurity (Dietz 2006, Potti 2010, Hasegawa 2012)
• too-small babies (Vesco 2011, Catalano 2014)
• more need for intensive care in the NICU (Potti 2010)

Tellingly, virtually NO media articles acknowledge that low weight gains have risks or cite the research that shows this. That there are so many articles promoting restricted gain in obese women while completely ignoring the potential harms of such a policy suggests a health agenda that places ideology over evidence.

And now there is even more research suggesting that very low gains may be risky.

A very recent study (Durst 2016) showed that weight gains below the IOM recommendations in obese women led to increased rates of  small-for-gestational-age ("SGA") babies and pre-term births. Another recent study (Cox Bauer 2016) found that gestational weight loss (GWL) was associated with low-birth weight babies. These are a concern because too-small babies are more at risk for future health problems like metabolic syndrome and insulin resistance.

Still another recent study (Hannaford 2016) shows that too-low weight gains, even in obese women, more than doubled the risk for too-small babies. The authors suggested that there may need to be a threshold of a minimum weight gain, even for very high-BMI women, which is a pretty radical suggestion given how many doctors are calling for zero gain or weight loss in this group.

But these new studies are far from the first to find reasons for concern. A brand-new meta-analysis (Xu 2017) of studies on weight gain below the 2009 guidelines in obese mothers found that low weight gain was associated with SGA babies in all obesity categories, not just in the borderline categories.

Yet another meta-analysis (Kapadia 2015) of studies on weight gain in obese pregnant women concluded that, because of its consistent association with too-small babies,

Gestational weight gain below the guidelines cannot be routinely recommended.

Too-small babies and prematurity may not be the only risks of very low weight gains; they may also be implicated in infant deaths.

A recent study (Bodnar 2016) found that weight loss and very low weight gains in Class I and II obese women were associated with a higher risk of infant death.

This is particularly important because research is very clear that SGA babies have a higher risk for stillbirth and neonatal mortality. In addition, some past research (Salihu 2009) shows that SGA babies of obese women are at particular risk for stillbirth.

Sorry, but SGA babies, prematurity, and infant death are pretty significant concerns. People like Dr. Myles, Dr. Oken, Dr. Stevens, and Dr.Klipstein who have been recommending weight gains well below the IOM recommendations have been playing Russian Roulette with the babies of their patients of size.

This is a common problem in medicine ─ taking a recommendation to extreme lengths without adequately studying its safety first.

Obese women as a group may benefit from gaining less weight on average than other women, but it does NOT automatically follow that even less is better. 

Sadly, while now there are years of data suggesting harms with very low gains and/or gestational weight loss, many experts are STILL telling women of size and their providers that "any weight gain in overweight and obese patients is detrimental to pregnancy outcome." Any weight gain, really?

This bias towards ever-lowered weight gain goals is so ingrained that it continues to deny the existence of any contrary evidence. The 2013 article quoted above advises OB-GYNs:

Weight maintenance and even weight reduction have not proven harmful in obese pregnant patients according to studies in the recent literature

Not proven harmful? This statement completely ignores numerous studies published before 2013 pointing out safety concerns with this advice (Bayerlein 2011, Bodnar 2010, Blomberg 2011, Vesco 2011, Dietz 2006, Potti 2010, Hasegawa 2012).

And now we have EVEN MORE studies showing that there are safety concerns, yet this low/no gain/weight loss advice continues to be given routinely by many providers who assure their patients falsely that there is no reason to worry.

But What About....?

Critics will undoubtedly point out that some of these same studies show benefits of lower gains such as a modestly lower cesarean rate or lower rates of pre-eclampsia. These are valid points. However, that's a whole different discussion because multiple variables influence these complications and it's difficult to tease out a causal relationship.

For example, caregivers are not blinded to their patients' gains. A bigger gain may mean a bigger baby. Fear of a big baby can strongly influence the perception of when a cesarean is "needed" and how many interventions like induction are used. Research shows that women with larger weight gains are induced at higher rates. Therefore it may not be weight gain that's the issue, but rather how the caregiver responds to the gain.

Pre-eclampsia is another situation where you can't jump to conclusions about weight gain. Women with pre-eclampsia typically have a lot of swelling, which means a higher weight gain. As Nohr 2008 states:

Any causal interpretation of the association between total weight gain and these complications is limited. For preeclampsia, high total gain most likely reflects pathologic fluid retention as part of the disease.

In other words, a higher weight gain doesn't necessarily cause pre-eclampsia, but rather it often results from pre-eclampsia. It certainly doesn't mean that a lower weight gain will prevent pre-eclampsia. We just don't know if deliberately restricting weight gain will lower the rate of pre-eclampsia in obese women.

However, it must be acknowledged that too much weight gain is probably also not ideal. Prenatal weight gain clearly influences fetal size, and higher gains seem particularly particularly potent for larger fetal size in high-BMI women. Postpartum, a larger gain may also be difficult to lose; multiple pregnancies with large gains can result in a net overall weight increase that might possibly affect the mother's health. So doctors have to find a balance between the very real risk/benefit trade-offs of too much or too little gain in pregnancy.

That's not easy, and I acknowledge that. But it seems to me that the debate is still very unbalanced, with too many experts still not willing to acknowledge the very real risks of too-small gains.

Deliberately ignoring contrary research is not an evidence-based approach. It smacks of a weight restriction agenda instead of a reasoned approach to best practices.

Summary

For too long, "experts" have been waging a campaign to lower the 2009 IOM guidelines even further for obese women. As a result, many care providers have used draconian pressure on women of size to gain very little or even to lose weight in pregnancy. But there are significant safety concerns with this approach, concerns that these so-called experts are conveniently ignoring.

The research makes several things clear:

1. Very low weight gain or weight loss is extremely consistent with too-small babies in multiple studies 
2. Too-small babies are at increased risk for adulthood diseases
3. Weight loss and very low weight gains may also be associated with a higher risk for infant death and prematurity 

These concerns means it's time for caregivers to STOP promoting extreme weight gain limits and to START acknowledging that very low gains also carry risks. 

Now, it may be that in time, different weight gains will be recommended for different levels of obesity. That seems like a possibility that is worthy of further consideration.

For example, "overweight" women (BMI 25-29) and women with Class I obesity (BMI 30-35) seem to be the most negatively affected by very small weight gains, whereas some research shows that women with Class III obesity (BMI 40-50) and Class IV obesity (BMI 50+) are less affected on average by very low gains.

So there may be some gradations in recommendations in the future, and I welcome discussions about this possibility ─ but given the established risks and the meta-analysis of studies that showed increased SGA risks across all class sizes of obesity, it would still behoove us to be very cautious about recommending very low weight gain even in women with Class III and IV obesity. We simply cannot assume that restricting gains is harmless even there.

Common Sense Recommendations

To me, what's missing from prenatal weight gain recommendations for obese women is nuance. It's time to pull back from prenatal weight gain extremism and show some common sense. Here are the things I think caregivers should take into account when discussing pregnancy weight gain with women of size.

Women of size should be informed in a neutral way of the IOM weight gain recommendations and why they were made. A neutral discussion, with research citations as appropriate, goes a lot further to helping women make informed and empowered decisions. A decision about weight gain goals that comes from the woman herself, rather than being imposed by external forces, is a lot more likely to result in reasonable gains.

How the message is communicated is important. Women should be given reasonable nutritional advice and strongly encouraged to exercise, but risks should not be exaggerated. Lecturing, scare tactics, and condescension means that people will simply tune out recommendations. Treat women as competent partners in their own care and avoid judgment. Emphasize healthy habits rather than numbers on the scale.

Consider tailoring recommendations by BMI. Women in the borderline BMI classes are the most at risk for poor outcomes with very low gains; they should be encouraged to gain nearer to the top of the IOM recommendations. It may even be that women with Class I obesity (BMI 30-35) do best with slightly more gain (15-25 lbs.). Women in Class III (BMI over 40) and Class IV obesity (BMI over 50) can be encouraged to gain towards the lower end of the recommendations or even slightly lower (5-15 lbs.) but great care should be taken that this message does not translate into pressure for restricted intake or extreme measures. Do not assume that very high BMI women have adequate nutritional reserves to make up for a lack of gain; good nutrition is always the priority.

Do not promote actively losing weight in pregnancy. Research shows there are too many potential harms to recommend pursuing gestational weight loss. Some women of size lose without trying; this is not a cause for panic as long as intake is adequate and the baby is growing well. But actively encouraging women to aim for weight loss during pregnancy is different than coincidental weight loss, is likely to result in restrictive behaviors, and probably has far greater risk.

Consider patterns of gestational weight gain. Has the weight gain pattern been relatively smooth? Was there a very large gain in the beginning? At the end? Different patterns may indicate different concerns. Also, don't forget to take pre-conception weight into account; many obese women lose weight in the first trimester and slowly gain that back to a small overall gain. If the initial loss is not counted, it looks like the woman has gained more weight than she actually has. Look at the whole picture.

Do not harass women about weight gain. Weight-related harassment is obnoxious and inappropriate, but it is sadly all too common. Women should not feel afraid to step on the scale at appointments, yet they often experience harassment. Medical assistants should record weight without comment. Care providers can ask neutrally about gains and can work with women on monitoring nutrition and troubleshooting worrisome trends, but judgment and belittling will only backfire. If a woman gains outside of guidelines despite good nutrition and regular exercise, consider other possible variables. Assume that a woman's body will gain what it needs for a healthy pregnancy.

Avoid food extremism. Women of size should not be pressured to strongly restrict calories or to eliminate entire food groups. They should be encouraged to eat reasonable amounts from a wide variety of foods. Nutritional advice should be evidence-based, not from unproven diet trends. Caregivers need to find a way to talk to clients about nutrition and weight gain concerns without condescension or judgment. Work with women and listen to their feedback about their needs.

Individualize care according to the woman's needs. People of size are not all alike. Some fit stereotypical images of fast food consumption and binge eating, others have very healthy habits, and many fall somewhere in between. Ask them respectfully about their habits and concerns; don't make assumptions. Believe what they tell you and advise them accordingly. If habits need improvement, encourage small and reasonable steps and recognize positive achievements.

Remember that weight gains among high-BMI women are highly variable. Research shows that weight gains in pregnancy are less predictable in larger women. Some have very large gains, some have very small gains, and some lose weight without trying. Often the women who gain the most are those who have recently lost weight or who are chronic dieters/weight cyclers, those with lipedema, or those who have swelling with pre-eclampsia. Many factors influence gestational weight gain besides the habits of the women. Acknowledge that some weight gain may be out of their control.

Look more at how the mother and baby are doing than at the scale. Guidelines are more for groups than individuals. While research shows that very high or very low gains are generally best avoided on average, some obese women gain more or less than recommended and have perfectly healthy babies. Some gain a lot and have average-sized babies; some gain almost nothing and have big babies; some lose weight with no obvious harmful effect. Gaining outside the recommendations is not necessarily a cause for alarm, as long as the mother's intake is normal and baby is growing well.

Women should not be subjected to extra interventions if they exceed their providers' weight gain goals. Some fat women are being consciously punished for "too much weight gain" by being subjected to extra interventions like inductions or planned cesareans. However, some of these interventions may occur because of providers' underlying fears about big babies. Care providers must actively examine their own biases so that they do not unconsciously use increased interventions on those who gain more.

Most importantly, focus on nutrition rather than on the scale. Too many providers use weight gain as a marker of pregnancy status and ignore nutrition altogether. What a woman is eating matters more than how much weight she has gained. Women can be given a weight gain goal range, nutritional advice, and exercise opportunities, but nutrition should not be manipulated in order to achieve an arbitrary number. The scale is a poor predictor of outcome and should not be used as a surrogate for nutritional adequacy or fetal status. Focus more on nutrition and concrete signs of how the mother/baby dyad is doing than on numbers on a scale.

Care providers need to bring common sense back into prenatal weight gain guidelines and take a more nuanced approach with women of size.


References

Very Low Gain and Too-Small Infants (Latest Studies)

Am J Perinatol. 2016 Jun 29. [Epub ahead of print] Gestational Weight Gain: Association with Adverse Pregnancy Outcomes. Hannaford KE1, Tuuli MG, Odibo L, Macones GA, Odibo AO. PMID: 27355980 DOI: 10.1055/s-0036-1584583

...OBJECTIVES: We investigated how weight gain outside the IOM's recommendations affects the risks of adverse pregnancy outcomes. STUDY DESIGN: We performed a secondary analysis of a prospective cohort study including singleton, nonanomalous fetuses. The risks of small for gestational age (SGA), macrosomia, preeclampsia, cesarean delivery, gestational diabetes, or preterm birth were calculated for patients who gained weight below or above the IOM's recommendations based on body mass index category....Women who gained weight below recommendations were 2.5 times more likely to deliver SGA and twice as likely to deliver preterm...Obese patients who gained inadequate weight were 2.5 times more likely to deliver SGA. CONCLUSIONS: ...Among obese patients, a minimum weight gain requirement may prevent SGA infants.

Am J Perinatol. 2016 Jul;33(9):849-55. doi: 10.1055/s-0036-1579650. Epub 2016 Mar 9. Impact of Gestational Weight Gain on Perinatal Outcomes in Obese Women. Durst JK, Sutton AL, Cliver SP, Tita AT, Biggio JR. PMID: 2696070

...STUDY DESIGN: A retrospective cohort of perinatal outcomes in obese women who gained below, within, or above the 2009 Institute of Medicine guidelines and delivered ≥ 36 weeks. Additionally, outcomes, according to the rate of GWG (kg/week; minimal [< 0.16], moderate [0.16-0.49], or excessive [> 0.49]) were compared among women delivering preterm. RESULTS: Overall, 5,651 obese women delivered ≥ 36 weeks. GWG above guidelines was associated with increased cesarean section (adjusted odds ratio [aOR]: 1.44, 95% confidence interval [CI]: 1.21-1.72), gestational hypertension (aOR: 1.58, 95% CI: 1.21-2.06), and macrosomia (birth weight ≥ 4,000 g) (aOR: 2.08, 95% CI: 1.62-2.67). GWG below recommendations was associated with less large for gestational age infants (aOR: 0.60, 95% CI: 0.47-0.75)...Minimal weekly GWG was associated with increased spontaneous preterm birth (aOR: 1.56, 95% CI: 1.23-1.98) and more small for gestational age (SGA) infants (aOR: 1.55, 95% CI: 1.19-2.01). Excessive weekly GWG was associated with increased indicated preterm birth (aOR: 1.61, 95% CI: 1.29-2.01), cesarean section (aOR: 1.39, 95% CI: 1.20-1.61), preeclampsia (aOR: 1.83, 95% CI: 1.49-2.26), neonatal intensive care unit admission (aOR: 1.33, 95% CI: 1.08-1.63), and macrosomia (aOR: 2.40, 95% CI: 1.94-2.96).CONCLUSIONS: Obese women with excessive GWG had worse outcomes than women with GWG within recommendations. Limited GWG was associated with increased spontaneous preterm birth and SGA infants.

J Perinatol. 2016 Apr;36(4):278-83. doi: 10.1038/jp.2015.202. Epub 2016 Jan 7. Maternal and neonatal outcomes in obese women who lose weight during pregnancy. Cox Bauer CM, Bernhard KA, Greer DM, Merrill DC. PMID: 26741574

OBJECTIVE: To evaluate neonatal and maternal outcomes in obese pregnant women whose weight gain differed from the Institute of Medicine (IOM) recommendations. STUDY DESIGN: Maternal and neonatal outcomes associated with weight change in pregnancy were retrospectively investigated in women with obesity (body mass index (BMI) ⩾30 kg m(-2); N=10734) who gave birth at 12 hospitals...RESULT: Compared with IOM recommendations, weight loss was associated with twofold greater odds of low birth weight infants and a mean decrease in estimated blood loss of 30 ml; excessive weight gain was associated with doubled odds of gestational hypertension or preeclampsia, fourfold greater odds of macrosomia and a mean decrease in 5-min APGAR of 0.09....

J Matern Fetal Neonatal Med. 2017 Feb;30(3):357-367. Epub 2016 Apr 28. Inadequate weight gain in obese women and the risk of small for gestational age (SGA): a systematic review and meta-analysis. Xu Z, Wen Z, Zhou Y, Li D, Luo Z. PMID: 27033234

...We conducted a meta-analysis of original researches with sufficient information about inadequate GWG in obese women stratified by obesity classes. SGA as the chief outcome was extracted and assessed in our analysis...13 studies (437 512 obese women) were included. Obese women who gained weight below the guidelines had higher risks of SGA than those who gained weight within the guidelines (OR 1.28; 95% CI 1.14-1.43). The same conclusions were also confirmed in Class I, Class II and Class III of obese women: Class I (OR 1.37; 95% CI 1.22-1.54); Class II (OR 1.38; 95% CI 1.24-1.54); Class III (OR 1.25; 95% CI 1.14-1.36). CONCLUSIONS: From our analysis, the guidelines of IOM can be applied to all the classes of obesity. More accurate boundaries for each obesity class should be established to evaluate the maternal and fetal risks. Diverse populations are thus necessary for more studies in the future.

Low Weight Gain/SGA and Risk for Infant Death 

Obesity (Silver Spring). 2016 Feb;24(2):490-8. doi: 10.1002/oby.21335. Epub 2015 Nov 17. Maternal obesity and gestational weight gain are risk factors for infant death. Bodnar LM, Siminerio LL, Himes KP, Hutcheon JA, Lash TL, Parisi SM, Abrams B. PMID: 26572932

OBJECTIVE: Assessment of the joint and independent relationships of gestational weight gain and prepregnancy body mass index (BMI) on risk of infant mortality was performed. METHODS: This study used Pennsylvania linked birth-infant death records (2003-2011) from infants without anomalies born to mothers with prepregnancy BMI categorized as underweight (n = 58,973), normal weight (n = 610,118), overweight (n = 296,630), grade 1 obesity (n = 147,608), grade 2 obesity (n = 71,740), and grade 3 obesity (n = 47,277)...For all BMI groups except for grade 3 obesity, there were U-shaped associations between gestational weight gain and risk of infant death. Weight loss and very low weight gain among women with grades 1 and 2 obesity were associated with high risks of infant mortality....

Am J Perinatol. 2016 Aug 17. [Epub ahead of print] Morbidity and Mortality in Small-for-Gestational-Age Infants: A Secondary Analysis of Nine MFMU Network Studies. Mendez-Figueroa H1, Truong VT2, Pedroza C2, Chauhan SP1. PMID: 27533102

...Data from nine Maternal-Fetal Medicine Units Network studies were used and included nonanomalous singletons at 24 weeks or more and birth weight < 90% for EGA...Among SGA, the likelihood of stillbirth (8.8 vs. 2.5 per 1,000 births; adjusted odds ratio [aOR] 3.98, 95% confidence interval [CI]: 2.92-5.42) and neonatal mortality (14.0 vs. 5.5 per 1,000 births; aOR 3.18, 95% CI: 2.55-3.95) was threefold higher compared with AGA. For the subgroup of newborns of EGA of 32 weeks or more, SGA, compared with AGA, had significantly higher risk of stillbirth (aOR 3.32, 95% CI: 2.16-5.12) and neonatal mortality (aOR 2.50; 95% CI: 1.38-4.54). From 35 weeks onward, the risk of stillbirth among SGA is almost four times higher than for AGA. CONCLUSION: The risk of stillbirth and neonatal mortality is significantly higher with SGA than with AGA. Modification in practice or new management schema may be warranted.

Obstet Gynecol. 2009 Aug;114(2 Pt 1):333-9. Success of programming fetal growth phenotypes among obese women. Salihu HM, Mbah AK, Alio AP, Kornosky JL, Bruder K, Belogolovkin V. PMID: 19622995

...METHODS: This was a retrospective cohort study using the Missouri maternally linked cohort files (years 1978-1997)...Fetal growth phenotypes were defined as large for gestational age (LGA), appropriate for gestational age (AGA), and small for gestational age (SGA)...Neonatal mortality among LGA infants was similar for obese...and normal...weight mothers (OR 1.05, 95% confidence interval [CI] 0.75-1.48) and regardless of obesity subtype. By contrast, SGA and AGA infants programmed by obese mothers experienced greater neonatal mortality as compared with those born to normal weight mothers (AGA OR 1.45, 95% CI 1.32-1.59; SGA OR 1.72, 95% CI 1.49-1.98). CONCLUSION: Compared with normal weight mothers, obese women are least successful at programming SGA, less successful at programming AGA, and equally as successful at programming LGA infants.

Low Weight Gain and Risk for Prematurity

Obesity (Silver Spring). 2013 Dec;21(12):E770-4. doi: 10.1002/oby.20490. Epub 2013 Jul 5. Gestational weight loss and perinatal outcomes in overweight and obese women subsequent to diagnosis of gestational diabetes mellitus. Yee LM, Cheng YW, Inturrisi M, Caughey AB. PMID: 23613187

...Retrospective cohort study of 26,205 overweight and obese gestational diabetic women enrolled in the California Diabetes and Pregnancy Program. Women with GWL [Gestational Weight Loss] during program enrollment were compared to those with weight gain...RESULTS: About 5.2% of women experienced GWL. GWL was associated with decreased odds of macrosomia (aOR 0.63, 95% CI 0.52-0.77), NICU admission (aOR 0.51, 95% CI 0.27-0.95), and cesarean delivery (aOR 0.81, 95% CI 0.68-0.97). Odds of SGA status (aOR 1.69, 95% CI 1.32-2.17) and preterm delivery <34 weeks (aOR 1.71, 95% CI 1.23-2.37) were increased. CONCLUSIONS: In overweight and obese women with GDM, third trimester weight loss is associated with some improved maternal and neonatal outcomes, although this effect is lessened by increased odds of SGA status and preterm delivery. Further research on weight loss and interventions to improve adherence to weight guidelines in this population is recommended.

BJOG. 2011 Jan;118(1):55-61. doi: 10.1111/j.1471-0528.2010.02761.x. Epub 2010 Nov 4. Associations of gestational weight loss with birth-related outcome: a retrospective cohort study. Beyerlein A, Schiessl B, Lack N, von Kries R. PMID: 21054761

...DESIGN: Retrospective cohort study. SETTING AND POPULATION: Data on 709 575 singleton deliveries in Bavarian obstetric units from 2000-2007 were extracted from a standard dataset for which data are regularly collected for the national benchmarking of obstetric units...RESULTS: GWL was associated with a decreased risk of pregnancy complications, such as pre-eclampsia and nonelective caesarean section, in overweight and obese women [e.g. OR = 0.65 (95% confidence interval: 0.51, 0.83) for nonelective caesarean section in obese class I women]. The risks of preterm delivery and SGA births, by contrast, were significantly higher in overweight and obese class I/II mothers [e.g. OR = 1.68 (95% confidence interval: 1.37, 2.06) for SGA in obese class I women]. In obese class III women, no significantly increased risks of poor outcomes for infants were observed. CONCLUSIONS: The association of GWL with a decreased risk of pregnancy complications appears to be outweighed by increased risks of prematurity and SGA in all but obese class III mothers.

Epidemiology. 2006 Mar;17(2):170-7. Combined effects of prepregnancy body mass index and weight gain during pregnancy on the risk of preterm delivery. Dietz PM, Callaghan WM, Cogswell ME, Morrow B, Ferre C, Schieve LA. PMID: 16477257

...METHODS: Using data from the Pregnancy Risk Assessment Monitoring System in 21 states, we estimated the risk of very (20-31 weeks) and moderately (32-36 weeks) preterm delivery associated with a combination of prepregnancy body mass index (BMI) and gestational weight gain among 113,019 women who delivered a singleton infant during 1996-2001...RESULTS: There was a strong association between very low weight gain and very preterm delivery that varied by prepregnancy BMI, with the strongest association among underweight women (adjusted odds ratio = 9.8; 95% confidence interval = 7.0-13.8) and the weakest among very obese women (2.3; 1.8-3.1)...Women with very high weight gain had approximately twice the odds of very preterm delivery, regardless of prepregnancy BMI. CONCLUSIONS: This study supports concerns about very low weight gain during pregnancy, even among overweight and obese women, and also suggests that high weight gain, regardless of prepregnancy BMI, deserves further investigation.

J Matern Fetal Neonatal Med. 2012 Oct;25(10):1909-12. doi: 10.3109/14767058.2012.664666. Epub 2012 Mar 12. Gestational weight loss has adverse effects on placental development. Hasegawa J1, Nakamura M, Hamada S, Okuyama A, Matsuoka R, Ichizuka K, Sekizawa A, Okai T. PMID: 22348351

OBJECTIVE: To clarify whether mothers with gestational weight loss (GWL) were likely to have adverse effects on the placenta. STUDY DESIGN: Subjects who delivered viable singleton infants after 24 weeks of gestation were enrolled. A retrospective analysis to evaluate cases of GWL in association with the findings of the placenta and amniotic membrane after delivery was conducted. After consideration of confounders, a case-control study with matched pairs (1:2) was performed. RESULTS: Of all subjects (5551 cases), 83 cases (1.5%) with GWL were found. Since the pre-pregnancy maternal body mass index (BMI) was significantly higher in cases, 166 controls with a matched BMI were selected. The neonatal birth weights, placental weights and the umbilical cord length in cases were significantly smaller than in controls (p < 0.05). Preterm delivery and small for gestational age (SGA) infants were more frequently observed in cases compared with controls [odds ratio (OR) 6.3; 95% confidence interval (CI) 3.3, 12.1, OR 4.3; 95% CI 1.9, 9.9]. pPROM were observed in 10.8% of the cases and 1.8% of the control (OR 6.6; 95% CI 1.7, 25.1). However, the frequencies of chorioamnionitis and the cervical length at second trimester were not different between the two groups. CONCLUSION: GWL is associated with SGA, small placenta, short umbilical cord length, preterm delivery and pPROM.

Lipedema, Part 4: Possible Causes and Associated Conditions

You can read the story of this mother
and daughter with lipedema here.

We have been talking about Lipedema (also spelled Lipoedema, as to the left), sometimes known as "painful fat syndrome," as part of Lipedema Awareness Month.

In this condition, an abnormal overgrowth of fat cells occurs in the legs and lower trunk, sometimes also including the arms or upper body as well.

Lipedema is rarely recognized by doctors. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.

In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

In Part Two of the series, we discussed how it progresses, the different Stages of progression, and why it's so important to be aware of lipedema

In Part Three of the series, we discussed the different Types of fat distribution patterns, looked at some pictures to illustrate Type and Stage of lipedema, and detailed how lipedema is diagnosed.

Today we discuss the various theories of what might cause lipedema, as well as conditions that are often associated with it.

In later installments, we will discuss treatment options, as well as practical suggestions on how to deal with lipedema.

What Causes Lipedema?

No one knows what causes lipedema, but there are several theories floating around. More than one of these theories is probably involved.

Hormonal

Since lipedema is diagnosed almost exclusively in women and usually gets worse starting around puberty, most researchers assume it is hormonal:

As lipedema appears to be expressed most commonly at puberty, it is reasonable to assume that hormonal influence underlies the marked female limitation shown in our studies to date

Since lipedema often gets worse during times of major hormonal shifts, like puberty, pregnancy, and perimenopause, many researchers suspect that estrogen somehow plays a role in its development.

The estrogen connection is logical because usually only women are affected. However, occasional case reports of males can be found in the medical literature, usually secondary to other causes like liver issues.

On the other hand, some people with lipedema believe that males are also affected by lipedema but its presentation in males simply goes under-recognized because it does not have the classic pear shape that women get. It might be that male sufferers instead have an increased tendency towards weight gain or lymphedema but avoid the pear shape or extreme leg size that women tend to get.

It is also conceivable that males might merely be carriers of the traits, even if they don't present with symptoms themselves. Either way, it would be revealing to look in more detail at the close male relatives of women with lipedema.

However, estrogen can't be the only answer to lipedema because all women go through puberty, most go through pregnancy and menopause, yet only some develop lipedema. And there are lots of women who develop pretty severe lipedema even when they are childless or have not been through menopause yet. There has to be more to the story.

Estrogen-related events may trigger a cascade of reaction that makes lipedema worse, but it seems obvious that there has to be some other underlying issue to be triggered.

Genetics

It seems clear there is a strong hereditary component to lipedema. Anecdotally, it often seems to be handed down from generation to generation. In the research, reports of family history of lipedema ranges from 16% to 45%.

The hereditary link is not 100%, of course. Few things are. Lipedema can occur without a family history of it. But just as a tendency towards certain heights tends to run strongly in families, so does lipedema.

The picture below shows a mother and a daughter with Type III (full leg) lipedema.

The mother looks to be in Stage 3, with orange-peel texture on her skin, large fat pads on the knees, and the classic bracelet of fat at the ankle.

The daughter looks like she is transitioning into Stage 2. Her skin is mostly still smooth but starting to change, she has overgrowth at the hips, and fat pads are just starting at her knees. The beginnings of a bump at the ankle can be seen if you look closely.

Attempts have been made to document the family trees of people affected by lipedema. Although not every woman in family histories is affected by lipedema, there often does seem to be a history of at least a few women with notably big legs, hips, or arms.

This led some researchers to propose that lipedema is "a genetic condition with either X-linked dominant inheritance or more likely, autosomal dominant inheritance with sex limitation."

However, this has not yet been conclusively proven. At this time, no specific genes responsible for developing lipedema have been identified.

Inflammation

Some researchers now believe that inflammation plays a key role in lipedema. This is the trendy theory on many lipedema websites now, with many women promoting "RAD" (Rare Adipose Disorder) anti-inflammatory diets in hopes of halting the progression of lipedema or lessening its symptoms. One lipedema resource states:

Lipedema is...an inflammatory reaction to our environment, processed foods, high carb diets, hormonal events such as pregnancy and menopause and chronic, everyday, or event related stress.

That seems an overstatement of the evidence to me; we do not really know yet if lipedema is caused by an inflammatory reaction. And lots of other people are also exposed to processed foods, a toxic environment, and extreme stress, yet never develop lipedema. So again, there has to be more to the picture.

However, that's not to say that an inflammatory reaction could not be part of the picture. But is it really the main source of lipedema-related issues?

Many women with lipedema report that at times they have experienced a flare, a sudden MAJOR worsening of their lipedema despite no changes in diet or exercise, sometimes also with lymphedema, infection, or a change in skin texture. Some have come to call this an "inflammatory cascade."

If the inflammation theory is true, then people with lipedema may be able to minimize their condition by avoiding foods that tend to be inflammatory (dairy, sugar, and gluten are the usual culprits named), avoiding stress, and avoiding possible environmental triggers like the chemicals in plastics.

On the other hand, the field of nutrition, weight management, and alternative medicine is filled with fad diets and nutritional trends. The anti-inflammatory diet is extremely trendy these days, so it's not surprising to see inflammation proposed as the cause du jour in various diseases. It's far from proven that inflammation is the main culprit behind lipedema flares, though it could be one piece of the puzzle.

Bottom line, we should not jump to too-broad conclusions about inflammation's role without good supporting evidence. Women with lipedema may have prematurely latched on to an anti-inflammatory diet as a "cure" because it gives them a sense of control and a magical totem against the possibility of developing severe disabling complications.

Lipedema experts these days recommend many different diets, not just anti-inflammatory ones. Take the anti-inflammatory buzz with a big grain of salt, but don't dismiss it either. An anti-inflammatory diet is mostly just common sense, and it's probably good for everyone to avoid plastics and highly processed food anyhow. It's unlikely to harm anyone if it is reasonable and moderate. Women with lipedema may want to try a RAD diet ─ not for weight loss, but to see if it helps their symptoms. But don't take it as a guarantee that it will help.

On the other hand, no one is obligated to follow an anti-inflammatory diet just because they have lipedema. Some lipedema groups lay a pretty heavy guilt trip on anyone not following an anti-inflammatory diet, despite the lack of proof of any benefit from it. Remember, at this point, its value is unproven. In the end it may be shown to have some effect, but at this point, it's all conjecture.

Inflammation is an intriguing theory and deserves to be investigated more thoroughly. However, inflammation is an unproven theory, and this must be kept in mind.

Auto-Immune System

Some people also speculate that lipedema may have an auto-immune component. This seems to tie in with the inflammation theory in that the inflammation may be an auto-immune response to insidious environmental cues around us, including food sensitivities, plastics, or estrogen-promoting foods and substances.

Although there is little proof of ANY of these theories at this time, an auto-immune connection is one theory I am inclined to take seriously, since anecdotally, many women with lipedema also report high rates of autoimmune diseases running in their families, such as thyroid issues or lupus.

Of course, the same argument made against the inflammation theory can be made here. Autoimmune is another trendy theory these days, so caution must be applied when considering it too.

Endocrine Issues

Lipedema often seems to be accompanied by endocrine issues, leading some to speculate that this may be the original trigger for the overgrowth of fat cells or inflammation cascades.

One lipedema article states, "90 per cent of...cases have accompanying diagnoses of hormonal disturbance (thyroid, pituitary, or ovarian)." And the new Dutch guidelines on lipedema encourage testing patients for various endocrine issues.

On the other hand, many lipedema resources do not pay much attention to endocrine problems as a possible cause. In my opinion, this is a vastly under-researched aspect of lipedema and I would like to see MUCH more research done on it in the future.

Honestly, lipedema reminds me a bit of acromegaly. It's not the same condition at all, but the process behind it might have some similarities. Acromegaly occurs when a benign pituitary tumor causes too much Growth Hormone to be produced, and as a result the body size increases immensely, though in different ways than lipedema (affecting bones and certain soft tissues rather than fat cells). People with acromegaly grow so much they can end up very tall, with large hands, feet, jaw, prominent forehead bulges, and enlarged organs.

What if there were something similar happening with lipedema? What if the pituitary overproduces (or underproduces!) an important hormone and this causes hypertrophy/hyperplasia of fat cells? Wouldn't that explain why some people have such overgrowth of fat, despite strict diet and exercise? And why so many people with lipedema seem to have other endocrine issues? And why people get lipedema in such differing severities?

It just seems to me that some sort of endocrine issue HAS to be involved somewhere in this condition, and pituitary seems logical since it is the "master gland" controlling the other glands.

However, as with the other theories, there is no proof of any connection between pituitary issues and lipedema, so this idea also has to be taken with a large grain of salt. 

Abnormalities of the Lymph and Vascular System

It's possible that lipedema may only develop in people with underlying abnormalities in the vascular or lymph system, as one resource notes:

Foeldi and Foeldi have proposed that microangiopathy in the area of the affected adipose tissue sets off the condition leading to increased permeability to proteins and increased capillary fragility. 

Dr. Karen Herbst, one of the most pre-eminent specialists in Rare Adipose Disorders, speculates that abnormalities in the way the body transports fluids is at the heart of the problem in lipedema. She notes:

...Fat in lipedema...[shows] copious amounts of watery fluid upon incision of lesions and of ‘free fluid fat’ in biopsy specimens. The increased fluid suggests a basic abnormality in the interstitial transport and exchange of fluid, with resulting disruption of fat and accumulation of fluid due to increased hydrostatic pressure. So this means that fluid is either entering fat at a faster rate or leaving fat at a slower rate. In fact, both are likely to be true. I think lipedema has problems in both lymphatics and blood vessels.

In other words, the capillaries that supply fat cells in lipedema women are fragile and damage easily, resulting in frequent bruising. In addition, they may be more permeable and leak proteins into the spaces around fat cells. These proteins tend to attract lymph fluids and cause swelling. The lymph system itself may also be somewhat defective, and the two of these factors (vascular permeability and lymph fluid transport issues) can add together to make things worse.

Summary

The bottom line is that nobody really knows what causes lipedema, but it's probably a combination of several things. One recent hypothesis proposes:

Lipedema is an estrogen-regulated polygenetic disease, which manifests in parallel with feminine hormonal changes and leads to vasculo- and lymphangiopathy. Inflammation of the peripheral nerves and sympathetic innervation abnormalities of the subcutaneous adipose tissue also involving estrogen may be responsible for neuropathy. Adipocyte hyperproliferation is likely to be a secondary phenomenon maintaining a vicious cycle.

This is more or less saying "all of the above." In all likelihood there is a tendency to inherit lipedema, perhaps through an underlying problem with the lymph or vascular system. Or perhaps it's underlying endocrine or autoimmune issues, with a strong sensitivity to inflammation and estrogen exposure. Or perhaps it's all of these, or something else entirely.

Whatever the combination is, it tends to create overgrowth of fat cells in certain areas. It is not yet known whether this is due to hypertrophy (an increase in size of fat cells) or hyperplasia (an increase in number of fat cells) but it's probably both.

These fatty deposits have particularly fragile capillaries that tend to leak fluids and proteins. These stress the lymph system over time, leading to the secondary development of lymphedema in some cases.

One major question that lingers in my mind is why some women do not progress very severely in their lipedema, yet other women do. Some never go beyond Stage 1 or Stage 2, yet others rapidly develop Stage 4 lipo-lymphedema. Why do some experience such severe manifestations of this condition and others do not?

If we can figure this out, I believe we will find many of our answers about the base cause of lipedema and how to treat it.

Possible Associated Conditions

Many women with lipedema also have other conditions, commonly referred to as "co-morbidities." Here are a few that are commonly seen.

Hypothyroidism or Other Endocrine Issues

As noted above, there may be a connection between lipedema and endocrine issues.

Two of the leading experts in the field note that many women with lipedema have thyroid issues. If you think you have lipedema and have not been diagnosed with hypothyroidism, you might want to have your thyroid levels checked periodically.

Please note that it's important to read up on the controversies of thyroid testing before having these labs drawn. Have the Free T3 and Free T4 levels checked as well as the TSH levels.

Get your exact numbers, and know how your lab defines normal and abnormal results.  Compare your results to various cut-off recommendations; don't accept just "normal" or "borderline" from your care provider. Different doctors and labs use different cut-off recommendations; the same reading can get you an "abnormal" flag from one provider and a "normal" flag from another provider.

Although not all "borderline" numbers need treatment, many people with borderline thyroid numbers and symptoms find they benefit significantly from treatment. In my non-professional opinion, the presence of lipedema plus a TSH around 2.5 or more and symptoms of thyroid issues deserves consideration of a careful trial of meds, especially if there is a history of autoimmune issues in your family. You may need to seek out a naturopath, integrative medicine specialist, or other "alternative" practitioner in order to get this treatment, however, as many traditional doctors will not treat unless the TSH number is well above 5.5.

Some women with lipedema also find that they have adrenal issues, especially adrenal fatigue. This seems not uncommon in women with thyroid or other endocrine issues. Some lipedema doctors recommend getting adrenal testing to check adrenal functioning. However, whether adrenal fatigue is real is controversial in some circles.

Again, some speculate there is a connection between lipedema and pituitary issues. Since the pituitary is the "master gland" controlling all the other glands, perhaps that is the real source of the thyroid or adrenal issues, rather than something limited only to those specific glands. 

Polycystic Ovarian Syndrome (PCOS)

PCOS seems to be a common co-condition with lipedema, although many women with PCOS do not have lipedema. Since women with PCOS tend to have an excess of estrogen compared to progesterone, and since lipedema seems to be associated with estrogen-related life changes (puberty, pregnancy, perimenopause), it seems logical that there could be a crossover between PCOS and lipedema.

Typically, women with PCOS have "apple-shaped" bodies (lots of abdominal fat but average-sized legs and hips), which doesn't fit the lipedema body type at all. However, some women with PCOS have more of a pear-shaped body and might want to look at the symptoms of lipedema more closely.

Many women with lipedema have symptoms of PCOS and borderline thyroid levels. It's my own unscientific observation that these women often have fibromyalgia as well.

Not much research has been done on a possible connection between PCOS and lipedema, but this is an area ripe for exploration in the future. Best guess is that many women who have both PCOS and lipedema will benefit from treating their PCOS. It won't make the lipedema go away, but it might help lessen its impact and progression.

Insulin Resistance

Many women with lipedema also have strong insulin resistance, perhaps related to concurrent PCOS.

On the other hand, most doctors would blame the obesity common with lipedema as the reason for insulin resistance. But insulin resistance and obesity is a chicken-and-egg question ─ which causes which? Was there an underlying insulin resistance which predisposed the woman to gain a lot of weight and worsen the lipedema? Or did the person gain a lot of weight first and then develop insulin resistance and worsening lipedema?

Women's experiences suggest that the insulin resistance usually comes first and predisposes to everything else later, but it's hard to prove that. And of course, weight gain may make everything worse in a vicious circle.

Either way, if you have lipedema, you should check your insulin levels. If they are high, it would probably benefit you to try to normalize them. It might not affect the lipedema much, but it might help lessen further weight gain, and it probably would lessen the risk for diabetes, stroke, and heart disease later on.

Nutritional Deficiencies

Some resources note that many women with lipedema have very low levels of Vitamin D, iron, and Vitamin B12. No one is sure why this might be, but there are a couple of theories around.

Vitamin D is fat-soluble, so most doctors assume that extra fat sequesters Vitamin D in the body, making it less available in the blood. However, other doctors point out that there is actually no proof of this theory and it's often promoted as fact when it is really just a theory with no supporting evidence. Whatever the reason, many doctors now believe that high-BMI people need higher doses of Vitamin D supplementation than average-sized people.

Low iron levels (or low ferritin levels, which lead to iron-deficiency anemia) may be associated with hypothyroidism. This may particularly be a problem for women in perimenopause, when some experience very heavy periods before their bodies shut down menstrual cycles altogether.

People with hypothyroidism can tend to have lower stomach acid, which may be one reason why they don't absorb dietary iron or Vitamin B12 very well. Low stomach acid can also predispose to intestinal yeast overgrowth, which may also inhibit absorption of nutrients.

If women with lipedema have higher rates of hypothyroidism, and if hypothyroidism tends to lower stomach acid and make it harder to absorb certain nutrients, then it makes sense that women with lipedema might have more nutritional deficiencies. On top of that, years of restrictive dieting and bariatric surgeries like gastric bypass put some women even more at risk.

Some women with lipedema report improvement with an anti-inflammatory diet, as noted above. This diet often involves leaving out dairy and gluten, among other things. Interestingly enough, people with low stomach acid often report having trouble with dairy and gluten. So perhaps there is a connection.

None of these connections have been proven conclusively, but they certainly are interesting. Perhaps taking out dairy and gluten can help, or perhaps increasing stomach acid levels (via daily apple cider vinegar or Betaine consumption) makes it possible to process those foods more easily and improve levels of ferritin, Vitamin D, and Vitamin B12.

Either way, women with lipedema (especially those with hypothyroidism) should watch for nutritional deficiencies and treat if needed.

Eating Disorders

A number of lipedema resources note the possibility of eating-disorders. One clinic in Germany found that 74% of their patients with lipedema had eating-disordered behaviors.

This is probably an overestimate. Most women with lipedema do not have true eating disorders, but some have flirted with them. Others clearly do have eating disorders, and that must be addressed in order to improve health.

Eating disorders can occur with lipedema because people have spent years being shamed and lectured into trying to lose weight. Yet lipedemic fat is extremely resistant. Often their approaches get more and more extreme as each diet fails. Is it any wonder, then, that some develop eating-disordered behaviors?

Some do truly develop into the binge-eating, housebound stereotype that TV programs love to feature. Some overeat for emotional reasons. Some learn to binge and purge to try and control their weight. Others become fat anorexics, following rigid diet restrictions and extreme over-exercising in a futile effort to control their size. The study from Germany found that 16% of their lipedema patients were actually anorexic in their behaviors, more than were bulimic or binge-eaters.

Although most people with lipedema do not have eating disorders, it's important to recognize that some do, and that this is a recipe for serious difficulties. Care providers shouldn't automatically assume that a woman with lipedema has an eating disorder, but if one exists, it is vitally important that it get treated too.

Immune System

Some resources describe a generally depressed immune system in women with lipedema. This may make you prone to easily getting illnesses and having a hard time healing from them.

Whether this is a function of the lipedema itself or the possible accompanying issues (i.e. hypothyroidism, auto-immune issues, chronic nutritional deficiencies) is not clear, but it is probably a good idea to be very proactive about avoiding illness.

Fibromyalgia

Anecdotally, there seem to be a lot of women with lipedema who also experience fibromyalgia. Since some believe that fibromyalgia is an autoimmune issue, the possibility that lipedema also has autoimmune components might explain a connection.

Fibromyalgia is not the same as lipedema, of course, since fibromyalgia patients have tremendous sensitivity to touch/pressure all over their bodies, and pain is mostly limited to the legs in lipedema.

However, perhaps difficulty with efficient lymph drainage explains similar symptoms. One Manual Lymph Drainage (MLD) therapist notes that many women with fibromyalgia find some relief from their pain levels with MLD therapy. Research does seem to support that MLD can be an effective treatment both for lipedema and for fibromyalgia.

Varicose Veins

Many women with lipedema develop telangiectasias, or spider veins.

In spider veins, small red spidery capillaries are visible just beneath the surface of the skin, spreading out like a spider web. This is not dangerous, but some people are bothered by its looks.

If you look very closely you can see spider veins in the picture to the left. Look just above and to the inside of the knees at the faint red lines. (You can see other pictures of spider veins here.)

Varicose veins and Venous Insufficiency can also be a problem for some people with lipedema. Good blood flow can be impeded by the extra fat deposits and the fragility and permeability issues. This may lead to blood pooling in some areas instead of circulating efficiently.

Hypermobility

Some resources have noted that many women with lipedema tend to be hypermobile, that is, their ligaments tend to be looser than average and therefore the women more flexible, at least in childhood.

This seems to be borne out in anecdotal evidence, though the hypermobility can vary from mild to significant. This can then lead to joint issues later in life.

Fallen Arches

Some lipedema resources report that "flat feet" (a.k.a. fallen arches) is more common in women with lipedema.

Is this just a function of a typically higher weight, or is this related to the lax ligaments and hypermobility that some have noted with lipedema? No one is sure, but it does seem logical that if lipedema women have hypermobility and joint issues, they might also tend to have fallen arches.

Joint Issues

Knee osteoarthritis is another issue common to women with lipedema. One 2009 study found that more than half of their patients diagnosed with lipedema also experienced significant knee pain.

Knee osteoarthritis seems to be common as people with lipedema age, and at a fairly early onset compared with the general population. One resource notes "early onset of degenerative joint changes and arthritis" among the symptoms commonly associated with lipedema. 

Of course, some providers question whether knee arthritis is more common simply because women with lipedema tend to be heavier. However, the authors of the 2009 study noted (my emphasis):

Knee pain is a feature of lipedema, but can also be found in simple obesity. Nevertheless, it appears to be a phenotypic feature and is often a complaint in pure lipedema where the BMI is normal.

Doctors think that this increased rate of joint issues is probably because of three different factors. First, because the fat deposits tend to have pockets of fluid around them and because lymph flow is inhibited, this excess fluid will tend to flow to areas of least resistance ─ the joints. This can irritate the joints and cause pain.

Second, as lipedema progresses, fat pads around the knees build up and can alter the mechanics of the knees. The gait may be thrown off and stress the knees.

Third, hypermobility issues may exacerbate joint issues. As women with lipedema age, this hypermobility combines with gait changes and fluid irritation in the knee to result in significant knee pain and rapid development of arthritis, especially in the face of an injury or trauma to the area.

Muscle Weakness

In addition to joint issues, there may be an increased level of muscle weakness, as well as weak connective tissue and joint laxity in those with lipedema.

This is a significant finding because one way to treat knee issues is to strengthen the muscles around the knees. However, if these muscles weaken as lipedema worsens (and do not respond to physical therapy and strengthening exercises), that may be another reason why mobility can be so affected.

Mobility Issues

Between the joint issues, hypermobility, muscle weakness, pain, and lipo-lymphedema, mobility issues often become very significant in people with lipedema as they age. 

Unfortunately, many people with lipedema are denied joint replacement surgery because they have elevated BMIs and doctors refuse to operate on them until they lose weight. But significant weight loss to "acceptable" BMIs is nearly impossible for people with lipedema, so they are never able to get their knees or hips replaced, and their increasing pain levels continues to decrease their mobility. Some end up in wheelchairs or scooters, and this lack of mobility creates even more lymphedema and fat deposits in a vicious feedback loop.

That's why it's so important to stay as active as your circumstances permit. It slows the progression of lipedema and lymphedema, as well as being good for your heart and other systems.

Mobility issues is another reason why it's so important that lipedema becomes more recognized as a medical condition deserving treatment.

At this point, the medical stigma of obesity among many doctors means that this condition often goes undiagnosed, with unrealistic weight loss prescribed when symptoms arise. Sufferers are often denied access to the treatments that do work until they become progressively more disabled and immobile, and then are made fun of in society when they use mobility aids like scooters.

It's only by raising awareness of lipedema and its treatments that more women will get the treatments that will help most and the stigma surrounding this condition will diminish.

Skin Infections

Cellulitis infection with lipo-lymphedema;
notice the foot swelling from secondary lymphedema

Another common problem in the latter stages of lipedema is skin infections.

This is usually not a serious issue until Stage 3 lipedema, or if secondary lymphedema starts to develop. However, sometimes things like bug bites or a seemingly minor cuts or burn can result in serious swelling, redness, and infection, even in the earlier stages of lipedema.

This means that all people with lipedema need to be very vigilant in caring for their legs and watch for minor problems before they develop into major ones.

Erysipelas and cellulitis (bacterial infections of the skin and underlying tissues) are a problem in some people as lipedema becomes severe, and it can be hard to treat because decreased lymph flow inhibits healing.

Infections secondary to lipolymphedema are hard to heal. Many care providers prescribe inadequate dosages of antibiotics in heavier people with skin infections, not realizing that weight-based dosing is needed with some types of antibiotics, or unnecessarily worrying about overloading the person's kidney function.

If not stopped with antibiotics, a skin infection can spread to deeper layers and become necrotizing fasciitis. If it gets into the blood system, a person can get sepsis and even die. Therefore, preventing, watching for and early treatment of any skin infections is an important part of care in people with lipedema, especially in the later stages.

When high BMI people go to the E.R. with cellulitis or other skin infections, they are often under-dosed with antibiotics, even in hospitals that specialize in treating heavier people. 

This is a MAJOR problem. Research shows that high BMI people, especially people with a BMI over 50, are often given an antibiotic dose that does not reach full inhibitory response. This may result in an initial improvement of symptoms, but a drastic relapse later on as the bacteria mutate and adapt to the inadequate dosage of antibiotics.

If you have lipedema and develop a serious skin infection, you may need to be very proactive in advocating for yourself. Ask for a wound infection specialist, ask if the type of antibiotic they are prescribing should have weight-based dosing (some do and some don't).

If the wound does not respond well, ask about more proactive wound care, including IV antibiotics, more frequent dosing, and larger doses, as research shows that proactive care like this can improve outcomes better than traditional care.

Summary

As we have discussed in this series, lipedema is a condition that is often mistaken for simple obesity. Diets and weight loss do not substantially reduce its presence, and lipedema often gets worse as people age, sometimes leading to significant mobility issues and life-threatening infections.

Many fat people with lipedema go undiagnosed for years because physicians either have not been taught about this condition (despite it having been discovered in 1940), or have so much weight stigma that they do not recognize the condition as anything other than obesity. Some even deny it is a real clinical entity, despite the fact that is recognized as one by many groups, including the NHS in the U.K.

Fat disorders are only now beginning to get the research attention needed to expand our knowledge but recognition of this disorder still has a long way to go in many parts of the world. Thus many people with lipedema will likely continue to go undiagnosed for some time to come.

Many women discover their condition via massage therapists or physical therapists rather than doctors because doctors are so under-informed about lipedema. Even today, women are being told that there is "no such thing" as lipedema, that they just need to lose weight, to exercise more, or that they are just making excuses for being fat and lazy.

Others are accused of lying about their food intake or exercise habits. Friends, family, and acquaintances may harass them about their weight and think that "lipedema" is just making excuses for bad habits.

Some lipedema sufferers are diagnosed with lymphedema without any mention of lipedema. Some are only diagnosed with lipedema once significant lipo-lymphedema develops and their condition becomes very severe. The fact that many cases of lipedema are only diagnosed after severe lipo-lymphedema develops is a sad statement about the ignorance of lipedema among most doctors.

Even once a woman has a diagnosis of lipedema, care providers can be very apathetic about managing it, or overly pessimistic about its progression so they don't bother providing much care. Women with lipedema often have to fight for adequate care or insurance coverage of needed treatments.

No one really knows what causes lipedema but it likely is hereditary in many cases. It may involve some sort of endocrine, inflammation, and/or auto-immune disorder, and there may also be underlying abnormalities in the lymph or vascular system. As one resource puts it:

Often mistaken for obesity or unusual weight gain, lipedema is a fat-storage disease that almost exclusively affects women...This chronic disorder affects the legs and arms, causing an abnormal accumulation of fat cells that produce a noticeably disproportionate appearance. There's a genetic component in approximately half of all lipedema cases, and it's not just being overweight or out of shape -- it's truly a disproportion in the affected areas of the body. It's a condition that is not only an overgrowth of fat tissue, but it also has a vascular or lymphatic component with swelling.

In other words, it's really NOT about diet and exercise, but about something we don't completely understand yet. Hopefully, finding and treating the hormone or endocrine issues and/or reducing inflammation as much as possible will help. It likely won't make the lipedema go away, but it might help minimize it or slow the progression.

More care providers need to familiarize themselves with lipedema so women get diagnosed and treated earlier to keep the condition from progressing. Furthermore, if complications such as knee pain, cellulitis, or lymphedema occur, care providers need to know how to treat them appropriately, instead of just telling the patient to lose weight, as so often happens now.

As one research summary notes:

Lipedema is a genetically mediated disorder of fat deposition. It results in a characteristic pattern of lower-extremity enlargement that is resistant to diet and thus very demoralizing. It can eventually lead to lymphedema but should not be mistaken for lymphedema in its early stages...This frustrating genetic disorder of fatty deposition is not particularly rare, but is rarely diagnosed because clinicians fail to recognize it.

Hopefully, once more doctors get past their stigma and prejudices about obesity, more research will be done into how to treat (and hopefully prevent) lipedema.

*Next post: Treatment options

References and Resources

If you think you have lipedema and need help in getting it diagnosed, see this resource. Also print out some of the papers from the links below and take those to your appointment with you. Remind your doctor that this condition is now recognized by the National Health Service in the U.K. and that there is information online about how to diagnose and treat it.

Resources

*Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.

• http://www.curelipedema.org/# - Cure Lipedema 
• http://www.lipomadoc.org/lipedema.html - Website of Karen L. Herbst, PhD, MD, one of the most pre-eminent researchers on lipedema. She is an endocrinologist practicing in Arizona
• http://fatdisorders.org/fat-disorders/lipedema-lipoedema-description - Website of the Fat Disorders Research Society 
• http://www.lipv.nl/Lipedema%20a%20frequently%20misdiagnoseds%20and%20misunderstood%20syndrome.pdf - Educational article on lipedema for care providers, good but technical in parts. (Not size-friendly; advocates "rigorous" weight control and suggests bariatric surgery)
• http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3309375/ - United States National Library of Medicine, National Institutes of Health 
• http://en.wikipedia.org/wiki/Lipedema - Wikipedia article on lipedema
• http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx - United Kingdom's NHS website page on Lipedema 
• http://www.lymphedema-therapy.com/Lipedema.htm - Lymphedema Therapy website 
• http://www.hanse-klinik.de/englisch/Lipoedema.pdf - article on lipedema from one of the foremost clinics in Germany that treats lipedema
• http://www.lymphedema.com/lipedema.htm - Peninsula Medical summary of lipedema
• http://www.lipv.nl/zslnokycordero.pdf - journal article about lipedema with many pictures
• http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema - Lipedema page from a website specializing in lymphedema information (Lymphedema People)
• http://www.webmd.com/women/guide/lipedema-symptoms-treatment-causes - WebMD article 
• http://www.lipedemaliposuctioncenter.com/about-lipedema.html - Liposuction clinic specializing in lipedema patients 
• http://www.lymphedemablog.com/2012/12/13/a-closer-look-at-lipedema-and-the-effects-on-the-lymphatic-system/ - Effect of lipedema on the lymphatic system
• Differential Diagnosis for lipedema vs. lymphedema - how to differentiate these conditions
• http://rlbatesmd.blogspot.com/2010/02/lipedema-lymphedema-lipolymphedema.html - blog entry on lipedema vs. lymphedema, written by a plastic surgeon
• http://www.obesityaction.org/educational-resources/resource-articles-2/obesity-related-diseases/lipedeam-and-obesity - article about why lipedema might occur (WLS site)
• http://www.mdjunction.com/forums/dercums-disease-discussions/articles/2888889-lipolymphedema-dercums - details about lipedema and lymphedema
• http://www.lymphnet.org/membersOnly/dl/reprint/Vol.%2019/19-1~UnLip.pdf - reprint of 2007 article on lipedema vs. lymphedema by Klose and Stroessreuter
• http://www.thelymphoedemacliniclondon.co.uk/pages/treatment-for-lipedema-and-lipo-lymphoedema.php - treatment options for lipedema and lymphedema
• http://lipedemaproducts.com/pages/stages - drawings illustrating the different types of lipedema as they progress through the various stages of lipedema
• http://blog.wegohealth.com/2014/09/15/the-phases-of-a-lipedema-diagnosis/ - Guide to navigating a lipedema diagnosis, written by Sarah Bramblette, a prominent lipedema activist

Blogs, Websites, and Facebook Pages from Those Dealing with Lipedema

• http://lipedema-simplified.org/ - blog and advocacy from Catherine Seo, who is dealing with lipedema and who is the maker of the new film "Born To Be Fat" about lipedema. (Caution, diet talk, but still a worthwhile resource for Fat-Acceptance folk)
• lipladyfab.wordpress.com - blog of woman dealing with lipedema and undergoing liposuction
• http://www.biglegwoman.com - blog of woman dealing with lipedema
• http://born2lbfat.com/category/livingwithlipedema/ - blog of woman dealing with severe lipedema, including her journey with gastric bypass
• http://lipedemagirl.tumblr.com/me - tumblr account of a woman dealing with lipedema and lymphedema, including having had lap band surgery
• Big Fat Legs http://www.bigfatlegs.com/ - blog of woman dealing with lipedema
• Lipoedema Ladies (U.K.) - http://www.lipoedemaladies.com/ - U.K. support group for lipedema
• http://www.tillysmidt.nl/LIPEDEMA_Englisch_for_Lipoedeem.html - website of Dutch woman with lipedema who was an early voice for treating lipedema (not a size-friendly resource)
• https://www.facebook.com/lilithnixroadtorecovery/posts/537379969717549 - Facebook page of a woman with lipo-lymphedema (this link takes you to her biography and lipedema story)
• http://www.thedoctorstv.com/videos/living-with-lymphedema-and-lipedema - video biography of Sarah from "The Doctors" episode (she has stage 4 lipolymphedema)
• http://www.nursevirginiablog.com/?s=lipedema - Nurse Virginia's blog (not size-friendly)
• https://mylipedemajourney.wordpress.com/ - a thin woman's journey with lipedema and tumescent liposuction to treat it
• http://www.lass.org.au/ - Lipoedema Australian Support Society (LASS)
• http://www.talklipoedema.org/ - U.K. support and information group for lipedema
• https://livingwithlipoedema.wordpress.com/ - a British woman's journey with lipedema, particularly focusing on its emotional effect and the treatments she has tried
• http://www.laurajdavis.com/blog/category/lipolymphedema - one woman's history of lipo-lymphedema, failed attempts at weight loss, and treatment difficulties
• http://lipedemanetworkcanada.com/ - lipedema support, education, and advocacy for Canada

Possible Causes of Lipedema

Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, Mortimer PS. 2010. Lipedema: An inherited condition. Am J Med Genet Part A 152A:970–976. PMID: 20358611 Free full text available here.

Lipedema is a condition characterized by swelling and enlargement of the lower limbs due to abnormal deposition of subcutaneous fat. Lipedema is an under-recognized condition, often misdiagnosed as lymphedema or dismissed as simple obesity. We present a series of pedigrees and propose that lipedema is a genetic condition with either X-linked dominant inheritance or more likely, autosomal dominant inheritance with sex limitation. Lipedema appears to be a condition almost exclusively affecting females, presumably estrogen-requiring as it usually manifests at puberty. Lipedema is an entity distinct from obesity, but may be wrongly diagnosed as primary obesity, due to clinical overlap. The phenotype suggests a condition distinct from obesity and associated with pain, tenderness, and easy bruising in affected areas.

Med Hypotheses. 2014 Aug 23. pii: S0306-9877(14)00295-3. doi: 10.1016/j.mehy.2014.08.011. [Epub ahead of print] Pathophysiological dilemmas of lipedema. Szél E1, Kemény L2, Groma G2, Szolnoky G2. PMID: 25200646

Lipedema is a common, but often underdiagnosed masquerading disease of obesity, which almost exclusively affects females. There are many debates regarding the diagnosis as well as the treatment strategies of the disease. The clinical diagnosis is relatively simple, however, knowledge regarding the pathomechanism is less than limited and curative therapy does not exist at all demanding an urgent need for extensive research. According to our hypothesis, lipedema is an estrogen-regulated polygenetic disease, which manifests in parallel with feminine hormonal changes and leads to vasculo- and lymphangiopathy. Inflammation of the peripheral nerves and sympathetic innervation abnormalities of the subcutaneous adipose tissue also involving estrogen may be responsible for neuropathy. Adipocyte hyperproliferation is likely to be a secondary phenomenon maintaining a vicious cycle. Herein, the relevant articles are reviewed from 1913 until now and discussed in context of the most likely mechanisms leading to the disease, which could serve as a starting point for further research.

Lipedema and Undertreatment of Skin Infections

Am J Emerg Med. 2012 Sep;30(7):1212-4. doi: 10.1016/j.ajem.2011.05.027. Epub 2011 Dec 12. Underdosing of common antibiotics for obese patients in the ED. Roe JL1, Fuentes JM, Mullins ME. PMID: 22169576

BACKGROUND: ...Obesity alters the pharmacokinetic profiles of various drugs. Although there are guidelines for dose adjustments for many of the antibiotics commonly used in the emergency department (ED), they are seldom used. METHODS: This is an institutional review board-approved retrospective study at an American Society of Metabolic and Bariatric Surgery Center of Excellence and a level I trauma center with annual ED volumes of more than 80,000 visits. Data were retrospectively collected from ED pharmacy records during a 3-month period in 2008. Any first dose of cefepime, cefazolin, or ciprofloxacin administered in our ED to a patient recorded as both more than 100 kg and with a body mass index greater than 40 kg/m(2) was compared with our hospital guidelines and found to either adhere or not adhere to those guidelines. RESULTS: ...Adherence rates for first dose of cefepime, cefazolin, and ciprofloxacin administered, respectively, were 8.0%, 3.0%, and 1.2%. CONCLUSION: Emergency physicians frequently underdose cefepime, cefazolin, and ciprofloxacin in obese patients. Underdosing antimicrobials presents risk of treatment failure and may promote antimicrobial resistance. Education is necessary to improve early antibiotic administration to obese patients.

J Prim Care Community Health. 2015 Apr 29. pii: 2150131915583659. [Epub ahead of print] Cellulitis in Obesity: Adverse Outcomes Affected by Increases in Body Mass Index. Theofiles M1, Maxson J2, Herges L2, Marcelin A3, Angstman KB2. PMID: 25925834

...This study was a retrospective chart review of 637 adult primary care patients designed to evaluate rates of treatment failure of outpatient cellulitis among patients of varying BMI. Treatment failure was defined as (a) hospital admission for intravenous antibiotics, (b) prolonged antibiotic course, or (c) requiring a different antibiotic after initial course. RESULTS: Adverse outcomes were not statistically significant between normal BMI and those with BMI ≥40 kg/m2. A subset of patients with a BMI ≥50 kg/m2 was noted to have approximately twice the rate of adverse outcomes as the normal BMI group...CONCLUSIONS: Patients with cellulitis weighing >120 kg or with a BMI ≥50 kg/m2 were at greatest risk for treatment failure in the outpatient setting, even when controlling for comorbid diabetes and tobacco use. As morbid obesity continues to become more prevalent, it becomes imperative that primary care physicians have better antibiotic dosing guidelines to account for the physiologic effects of obesity to minimize the risk of increased morbidity, health care costs, and antibiotic resistance.