Weight and EDS and MCAD

Image of a white persons bare feet on a large dial style bathroom scale
A weighty issue

This post is apt to be fraught with emotional triggers and landmines due to the nature of the subject itself. Weight loss and management have been a sore point for millions of people for many years, especially in the post war era in the so-called “first world” when big oil and the chemical industry radically changed the face of our modern western food production. And the cosmetic and media industry have established unrealistic standards for women at least at the same time.

I feel strongly that the farther we’ve swung the pendulum to the instant and convenient side in the US at least, the worse our health has become, and the greater our struggle with weight gain in general, everywhere.

All while we continue to simultaneously present increasingly unrealistic beauty standards on magazine covers and in advertisements.  So is it any wonder millions are obsessed with their self-image and weight loss, trying to match the standard model?

But many lower and middle class families are trapped in a vicious cycle of working too much to have time to properly prepare a wholesome, nutritious meal from scratch – at least in the west. We have adopted and almost require a dual-income lifestyle to support our consumption habits (both durable goods like computers and gadgets as well as food) and now sky-high housing costs. This leaves many of our able-bodied homemakers of any gender too exhausted and busy to have the time needed to properly prepare a good meal. Not always, but many. (You foodies can sit on your hands here.)

And disabled hypermobile, EDS and MCAD patients with or without fibromyalgia stand even less of a chance, as we are often weaker, fatigue more easily, and often can’t properly process whole or raw foods fully or even at all. Yet we can’t always afford pre-cut or prepared versions either. I’ve been bested by many a chicken and butternut squash myself. And don’t get me started on packaging!

Toss in a myriad  of complications we find in the Ehlers-Danlos, hypermobility and MCAD communities, and many struggle to keep any extra weight off, much less eat healthy or well – or even enough sometimes. (Hold that thought.)

What’s a hypermobile body to do?

First off, let me dispel the first big myth: there is no single easy answer to weight management (loss or gain) for ANY one, much less a hypermobile patient. There are no panaceas for any of us, period, we all have very individual metabolisms and methylation cycles as well as detox pathways affecting how we process foods and drugs.

Secondly, there are multiple drivers of weight gain in general that we struggle even more to overcome thanks to lax joints, weak muscles and tendons and chronic fatigue from multiple drivers also. So you’re not going to go away with a single easy answer for your weight loss, sorry. It’s just not that simple. (Sensing a theme I trust.)

Further, some poor folks actually struggle to GAIN weight – something that is all too often overlooked in our image-conscious western media. And many of them have a Hypermobility Spectrum Disorder or form of EDS with comorbid gastroparesis (literally: stomach paralysis and slowed or halted motility) lending to this among other things. I myself was technically “anorexic” (lacking appetite, unable to eat) from MCAS three years ago before I figured out I was reacting to chlorine and fluoride in my water. I dropped to 106 lbs at 5′ 4″ before I figured it out. (I’m back up to a healthy weight again, no worries.)

I’ll address all of these below, but will add that there’s another as yet poorly known cause of unavoidable and intractable weight gain in our community that seems to go hand in hand with this family of connective tissue diseases (hypermobility, EDS and MCAD) that is rarely recognized still called:

Lipedema

While it seems to strike most predominantly in women, men can and do have it also. It is an actual adipose (fat) tissue disorder that causes truly unavoidable weight gain no matter how healthy (nutrient dense) and few calories you eat and apparently no matter how much you exercise. You may lose “regular” fat aka “obesity” from dieting and exercise, but this won’t comprise the majority of your fat with this condition. It’s probably part of what was “eating” Gilbert Grape’s mother  (although she is portrayed as just having an eating problem), and is afflicting one of my best friends who eats less than I do, no kidding. Yet somehow she weighs three times more no matter how carefully she eats.

photo of 4 pairs of legs in various weights
Stages of Lipedema via The Lipedema Project

I’m deeply convinced that what is now called “Dercum’s Disease” is really just a case of lipedema with as yet unrecognized or identified clinical MCAS on the side. But that’s just my unprofessional opine of course. Articles like this one and this one are what are leading me to increasingly think this along with my own experience with stress-induced inflammation and observation of many online.

Unfortunately for this latter group, there isn’t a lot yet to be done besides continuing to try to eat as nutrient dense and healthfully as possible according to your body’s sensitivities. Many find they are gluten sensitive also, if not outright celiac which seems to also lend to weight-gain, possibly from secondary Hashimoto’s disease or other hypothyroidism.

So as you can see there are several reasons for seemingly intractable (unavoidable, hard to shake) weight gain in women and some men and others that have nothing to do with your caloric intake aside from quality and gluten content, and a healthy lifestyle. Sure, it’s worth trying to diet and exercise and staying as healthy as you can, but some people will just plain gain weight despite all their best efforts to not do so. Toss in joint laxity and hypermobility if not also MCAS, and it’s very hard to “exercise” to any significant degree for some further compounding the issue. This should be raising a red flag for your doctors to look further, but few do.

This, and many other reasons including just plain personal agency of one’s body are a couple of really good reasons for everyone to stop fat and body-shaming yesterday. Is there a subset who could use some dietary help and portion control? Sure. But I’m increasingly convinced “true obesity”, meaning excess weight above mean BMI from over-eating and lack of exercise is actually a minority of the cases in overweight or fat people we see now. And let’s face it, anyone who overeats probably has other issues that can use support as well such as depression and other eating disorders from a variety of other causes they would rather not have.

And yes, we now prefer the term fat to obese, or bariatric, which is simply medical speak for the same thing, which pathologizes our bodies, adding a layer of judgment. I know my friend didn’t ask to be the weight she is, but not one doctor recognized any of her underlying conditions all these years, just writing her off as “obese”, and assuming she ate too much. If they only knew!

But this is why I’m writing this post – to help raise awareness of the multiple drivers of weight gain in the hypermobile population, whether you have an officially recognized form of the “Ehlers-Danlos syndromes” or not. It appears that whatever is driving the Hypermobility Spectrum Disorders (think “subclinical EDS” now since 2017) lends to this for as yet unknown reasons. I know at least one doctor in Arizona who is aware of and working on trying to suss this out as I type. We just need to clone them. And raise awareness among everyone else.

And again, some poor folks literally struggle to gain weight, and gain strength. I think this can be from multiple drivers again stemming from both a connective tissue disorder (HSD or EDS etc.), and possibly biochemical or hormonal imbalances or trouble. (Addison’s, gastroparesis.) Some people vomit every time they impinge their vagus nerve. Others react to almost everything they eat, and sometimes even just to the act of eating itself due to their MCAS or mastocytosis. They may end up on total parenteral nutrition, or G- or J-tubes to maintain their health at all. There is no true cure for gastroparesis itself, but Crystal Saltrelli has uncovered many helpful solutions.

Should you just eat freely then if you’re heavy, since it doesn’t matter? I won’t stop you. But I would still urge doing your best to eat as nutrient dense and low-inflammatory for YOU as possible, in all cases. Avoiding known MCAS triggers will help lower your histamine levels and keep that over all inflammation down. And definitely avoid gluten if you are or suspect you may be celiac. (You may be surprised.)

I personally do best on a mostly paleo semi-ketogenic diet I’ve adapted from the GAPS diet I first tried successfully in 2013. I’m so grateful to have found something that works more than not for me, although I remain in constant GI pain and mildly inflamed at all times still. I am managing and can work again, including around my diet. But we all have to “thread our own needles” so to speak, and find what works for each of us based on our body metabolisms and chemistry as mentioned above.

No, the holidays don’t help! Just start where you’re at, with what you can. Even one small change a week or even per month will be a step in the right direction, right? And yes, it’s much harder for families to make these changes than individuals like myself. No one is pressing me to eat things I shouldn’t thankfully at least at home. They still do when “out”, which is very frustrating. But I’m slowly prevailing, and we all will, one meal at a time. At least you  know you’re not alone!

To your health,

Jan

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