It’s possible that, with a PhD in genetics, I consider myself to have more than dipped my toes in the streams of science. As a person with two chronic illnesses (and that’s not counting endometriosis: I’m fortunate that it appears to have been resolved via laparoscopic treatment), I am a hearty and enthusiastic fan of evidence based medicine. I believe in expertise and expert advice.
As a person who has had a slew of sub-par doctors and who now has an excellent medical team, I also know that sometimes expertise is no defence against error, oversight, dismissal and short-sightedness.
For example: a patient presents with recurring peri-anal abscess. She’s been hospitalised for them several times, since the age of fifteen. They’ve been resolved and surgically. They keep occurring in slightly different locations. Do you…
a) diagnose her with hidradenitis suppurativa without a dermatological consult [edit: would have said “this is not HS. I have seen HS. This doesn’t look remotely like HS.”] and just say “oh well, sucks to be you, come back if it happens again and I’ll give you horse-pill antibiotics” (note: the horse-pill antibiotics do work if they get in soon enough, so no disrespect on that point)
b) order an endoscopy because perianal abscess is strongly associated with Crohn’s Disease and we should probably rule that out?
If you chose (a), congratulations, you’re the doctor that makes my current specialist and GP make faces and try so very hard not to say “that guy was a fucking hack.” (note: all the GPs and specialists I have seen have been way too professional to say this, but even a spectrum lass like me can read the facial expression that means “HE FUCKING WHAT?!”)
A patient presents with sudden onset pelvic pain and breakthrough bleeding between periods. Yeah, she has kind of unpleasant periods but sort of thinks it’s normal and shrugs helplessly when you ask how much pain she has because – naturally – she has no basis for comparison. You rule out urgent things like tumours, STDs and ectopic pregnancies and try to perform a Pap Smear, but it’s too painful to get it done. You order an ultrasound for PCOS and sub-acute appendicitis which comes back inconclusive. You refer her for possible PID, which comes back clear.
a) continue to suspect possible sub-acute appendicitis – which is unlikely to show up in an MRI – and send her for an MRI, and when that comes back negative, diagnose her with severe constipation, give her Fleet and lactulose, and tell her she’ll be spending Saturday night at home within six feet of her toilet?
b) mention that endometriosis is a possibility, since it affects an estimated 10% of women, and while it’s a diagnosis of exclusion, it might be worth getting it checked out?
If you chose… (a)… good work. You’re that guy again.
A patient presents with overwhelming fatigue. She says she needs at least 10 hours sleep a night or she’s useless. Do you…
a) ask whether the medications she is taking might cause fatigue?
b) Order a fatigue panel (liver function, thyroid function, B12, iron, blood count, CRP, vitamin D, etc.)?
c) Tell her that some people just need a lot more sleep?
In this case, if you chose (c)… HI YOU ARE THAT DUDE.
This is going to sound like doctor bashing – and wow, actually, it really does. I’m not a doctor. Not even close (a PhD in genetics and marine biology does not qualify me). To be fair, the first scenario speaks to two doctors I’ve seen. The second is a merge of about three doctors. The final one isn’t even mine, it’s something a friend of mine dealt with. I can come up with more.
Doctors have a fucking hard job. The human body is fabulous, but in the immortal words of Doctor Gregory House, it’s also really stupid. There are so many things that can go wrong with it, and they’re confusing and interrelated because biology is the most inconsistent and wacky of the sciences. I’ve learned on my trip through diagnosis roulette that diagnostics is hard. It’s really, really hard. The first line diagnostics for Crohn’s Disease failed me – they came back negative or just slightly weird. I was fortunate in that I had a specialist willing to take my word for the pain (and who also thought that the number of abscesses I had was just profoundly stupid) and keep searching. I actually have an enormous amount of sympathy for some of the doctors in this scenario. I’m only genuinely angry at one of them. This disclaimer is really important to me.
Because in spite of the last (pause to check stats) 750-odd words I just wrote, I actually am probably going to side with the medical community in most cases. It’s easy to get it wrong. It doesn’t mean they’re incompetent. It means mistakes happen. Even the wrongest (no, that’s not a word; yes, I’m going to use it anyway) of doctors knows a billion times more than I do about the human body and human medicine. There’s only one relevant area where my knowledge exceeds theirs, and that’s my own perception of my own symptoms.
And even then, that’s iffy. It’s subject to the placebo effect. It’s subject to the nocebo effect (the opposite deal. Also fascinating, and a good deal more frightening). It’s subject to confirmation bias. It’s subject to reversion to the mean. There are so many ways that my own perception can’t be trusted. Statistically, I should consider myself a data point, and I should consider that my health will behave according to those statistics.
I’ve written about expertise before. Mostly, I stand by those words.
But there are areas where I don’t – and that’s where this post comes in, and where the title comes in. For example, I think paleo is based on some profoundly appalling ideological scaffolding. I also think (as explained in that linked post) that there are reasons that some people feel better on it, and that they aren’t necessarily ascribed to a placebo effect.
Before my (very awesome and kind and hilarious) GI doc said I probably had isolated small bowel Crohn’s, I’d pretty much concluded that was what was going on. I needed a push from that dermatological resident who took one look at my abscess site and said “dear god, you do not have HS. How long have you been told that’s what you have?”, but from then, the evidence began to snowball. I searched and searched and trawled the medical literature (reading outside my field is daaaaaangerous) for links and indications.
The thought that I had endometriosis had never occurred to me, for different reasons: menstrual pain is dismissed. We’re told menstruation hurts. We expect it to hurt. Some say it’s not worth complaining about. Some are bedridden. We have no way to know the relative severity of our experiences because pain is profoundly subjective. So I didn’t self-diagnose that one – a resident at the Mercy Hospital told me that was what she thought was going on, after a negative finding for PID.
I needed a push with hypermobility, too. A physio said that I was crazy hypermobile, and I looked into it, and ended up with a self-dx of Ehlers-Danlos. I’m booked in to see a specialist to talk about my possible EDS-related low blood pressure and related fatigue, because my reported symptoms of bendiness and dysautonomia were enough to triage me into a profoundly overbooked clinic.
There are so many GPs who would look at this and say “OH GOD. GOOGLE UNIVERSITY. THE FUCK IS WRONG WITH YOU.” And that’s entirely fair. That’s the problem. It is realistic to be concerned about people trying to diagnose themselves. There’s nothing particularly special about me that says I should get away with this bullshit when other people get smacked down for it, except that I have a PhD in the biological sciences and so I’m a bit more critical of my source material. I look like a hypochondriac – except I keep getting tested.
And… I keep being right. I’m not learning the right lessons here, because I keep. Being. Right. I can’t placebo myself into low iron, or inflammation and ulcers in my small intestine. I can’t placebo myself into dysautonomia (or… can I?) and soft tissue injuries (although I’ll be brutally honest: you probably can placebo yourself into low blood pressure. I’m not sure whether that would be orthostatic hypotension or low BP across the board, but I can see it working).
This brings me around to the woo side of things. I would say I’m pretty anti-woo. I think homeopathy is so profoundly bad and stupid that it would be hilarious if it weren’t so dangerous. I can’t believe the shit people feed themselves to avoid Big Pharma (you know, the Big Pharma that tests and refines things so that you get a predictable result – even though, of course, Big Pharma is profoundly problematic in so many ways. Nothing is all good or all bad, hmm?). I am almost militantly pro-vaccine. I am pro-choice in a balls-to-the-wall kind of way.
But I eat a ketogenic diet. And, as a friend recently pointed out to me, when you try to research keto, you end up surrounded by the world of crystal healing bullshit, and there’s guilt by association. Fucking Pete Evans is in favour of very low carbohydrate diets, and I think that guy is dangerous and wrong in so many ways.
I’ve described my keto as medically indicated. It is. When I confessed (really really nervously) to my GI doc that I eat a low carb diet, and in one rushed horrified breath explained why I did it and how I managed it and how long it took me to get it sorted, he backed me up. He said, “Don’t worry, you are doing the right thing.” The tension disappeared from my hunched-up shoulders. When I told my GP, she frowned a little and looked at my lipid panel and said, “Look, you have the best HDL/triglyceride ratio I’ve ever seen. I actually don’t know much about keto diets, but this is clearly working for you. We’ll keep monitoring. When it’s not, I’ll tell you.”
When I eat keto, as I’ve said elsewhere, I feel much better. My resting heart rate is lower . I stop developing thrush (TMI! Ah, too late). I don’t bloat and fart so much. I’m in much less pain. I have more energy. I feel less nauseated. I don’t feel hungry and sick all the goddamn time. My fasting insulin went from the pre-diabetic state down to almost normal and then down to barely detectable as my carbohydrate consumption dropped. I can eat breakfast, feel fed, and move on, instead of cramping and nausea.
(sidebar: I do actually still have some cramping about 20-30 minutes after eating breakfast, but it’s much less severe, and a lot of that is probably the fact that I still have Crohn’s, and putting food in my small intestine hurts, because my small intestine is inflamed and has ulcers, and it doesn’t matter what I eat, that’s always going to suck)
I get less abscesses. Which means less surgery. YES. My diet means I can have less surgery and I think that is fucking important.
There are downsides to keto. SO MANY DOWNSIDES. I have some spectrum sensory processing issues, which mean I can’t eat salads or many veggies, so I try to cover my bases by taking multivitamins (I take prenatal, partly because I was going to try for a kid before I ended up on teratogenic medications, but also because Surgeon Sam wants me to get more folate as a Crohnie. We sometimes don’t absorb folate well and need to supplement). Keto means low insulin, which means your kidneys dump water and salt – so I have to drink more water than most people, and I also have to supplement salt to avoid cramping and headaches and irritability and fatigue (hey, if you’ve ever gone low carb and had those symptoms? Please smash more salt). Keto means not having some of my favourite foods – and I love food. I am a pastry elemental. Keto means reduced explosive power – the metabolic pathway employed in a ketogenic metabolism is much less efficient than a glucose-based metabolism and it makes some of my favourite activities, like running and rock climbing, more difficult.
Keto is work. It’s maths. It’s weighing and logging to make sure you’re not over-carbing, or even over-proteining (yes, that’s a thing). It’s trying to figure out how to get more calories in the form of fat without overdoing the other macronutrients. It’s wanting to scream at another supermarket aisle that adds Healthy Wholegrains or More Sugar to some delightfully Low Fat products that you don’t want and don’t need, and yes, I would prefer artificial sweetener to sugar, because aspartame and sucralose and erythritol and sorbitol won’t make me nauseated or give me thrush and sugar fucking will.
Because my small intestine is damaged and doesn’t absorb sugars properly (it’s called “secondary carbohydrate malabsorption” and happens to some Crohn’s people).
But the diet is medically indicated. I need to be on it. I can take breaks from it – I frequently do. Sometimes it’s for my own mental health, because I don’t have the spoons to plan food and I just need to fucking eat something. Sometimes it’s because I’m holiday and travelling and it’s just too hard. As long as those breaks are pretty short (<2 weeks) and don’t happen too often, it’s manageable. I went off keto for a month while I was at sea last year and… there were consequences.
Here is – finally – where the threads of this post come together.
I figured out keto myself. No-one told me to try it. No doctor or nutritionist or dietitian said “Hey, drop the muesli.” I noticed a pattern, that the lower and lower GI my food went, the better I felt. I noticed that it would work for a while, and then I would feel sick again. And I looked into it and said, “You know. Fuck it. Let’s try this. We’ll try it for a few weeks and see if I feel better. I absolutely reserve the right to kick it as soon as it sucks.”
But I knew this was a big change, and that it could affect me badly, so I wanted to make sure I was ready for it all.
I researched everything. I learned about salt. I learned about the difference between monounsaturated, saturated and polyunsaturated fats when it came to muscle membrane interactions and insulin sensitivity. I learned about adaptation, how long it would take, how shitty I would feel, and how important it was not to interrupt it. I learned that keto isn’t just “another diet”, but that the ketogenic pathway is a separate, liver-intensive metabolic pathway that focuses on mobilising fats (which is why interrupting it is bad. The minute insulin spikes, ketone production stops, and you’re back on the glucose pathway for a while until it subsides – which can take days). I learned that your brain can feed on glucose and ketone bodies but not on fatty acids, and that’s why if you go low carb but not low carb enough to produce ketone bodies, you get brain fog and “bonking”. I learned how keto would affect my exercise plans and successes, and that I would basically be retraining my cardiovascular fitness to deal with it (oh god. OH GOD). I read and read and read.
And I critiqued. Because fuck, there is a lot of really, really good science about keto out there. There’s a lot of good biochemistry. There’s a lot of good sports science and dietary information. And there is an absolute bucketload of crazy bullshit. It’s heartbreaking.
It’s heartbreaking because every time I have to tell someone I eat “very low carb”, I tense up, waiting for them to give me the side-eye and either imply or say outright that I am so full of it. I don’t want to say “I’ve done my research!” – even though it’s true – because that is what anti-vaxxers say and they are not immunologists and their wrongness is so profound and so absolute that it literally kills babies. What makes me different? What makes me any better? I mean, if I’m wrong about my diet, no children are going to die from whooping cough, so that’s a win right there.
It’s heartbreaking because I’m not trying to convert anyone to keto. I genuinely think that some people would feel better on it, that some people could take it or leave it, and that for some people it’s not a great idea (psychological factors are important here. Keto is a great window into orthorexia if you’re at risk of that, and you need an eating disorder kind of like you need a hole in the head). Because nutrition and metabolism and dietary tolerance is extremely idiosyncratic. It comes down to gut flora and various organ functions and health and a whole shitload of other factors that I do not understand. The only blanket statement I could offer is that, if you’re pre-diabetic or have type II diabetes and are even remotely interested, it might be worth a shot. But ask your doctor! Unless your doctor doesn’t believe it’s possible to do keto in a healthy way, in which case, you’re kind of sunk, because it is factually possible to do keto in a healthy way, it’s just that most people don’t know how, or won’t put the effort in, and will just start eating a lot of bacon and wondering why they feel sluggish (sidebar: bacon is awesome). You want a doctor who knows it can be done, but might have more insight into whether or not it is a good idea for you, who is willing to work with you and monitor you, and who will tell you when it’s not working for you – “You tried. Fair play. But no, let’s stop this.” Or who will tell you when it is! “This is going really well. Keep it up. Maybe we should fine tune the kind of fats you’re eating, or the salt.”
You may notice that I have not at any point mentioned weight loss as relates to keto. The next three paragraphs are going to be about that, then I will not mention it again, so if that’s something that’s going to upset you, skip these paragraphs. I am mostly a Health At Every Size person. I don’t believe that being fat is necessarily unhealthy, although abdominal fat is not hormonally neutral, and if you’ve got joint problems like moi, less pressure on those is good – but then again, trying to lose weight long term is not something that seems to be possible for most people, and why beat your head against that brick wall when you could just do your own thing? So. (I would normally use more whitespace here, but I gave that paragraph warning, so I have to stick to it)
Keto appears to be helpful in weight loss for some people. The reason this works is two-fold. Firstly, keto is high fat. Fat is calorically dense, and really filling – even more so in people who usually eat high-carb, low-fat. So you will eat less food overall, which creates a caloric deficit. This one’s a bit of a no-brainer. When I first started keto, I had real trouble eating enough food.
Secondly, keto means that your insulin levels drop, because your body isn’t busy dealing with blood sugar (which always takes priority, because high blood sugar is super toxic). So suddenly, fat metabolism is much easier and your body can devote more time to it. Instead of just shunting fats into storage to be dealt with later, they get rolled up into ketone bodies and actually used (I am taking some artistic license. I don’t think these are actually like fruit roll-ups). We can store a lot more fat for energy than we can glucose. If we become very efficient at fat metabolism, it’s a very even and useful energy source for sustained work (like long-distance running. Not sprinting). If you have insulin resistance (as I did at one point, and my insulin response is probably still a little borked), your background levels will be high enough that you’re just not mobilising fats properly. They get shunted into storage, and can be even if you’re eating at a deficit. People who are severely insulin resistance have a huge problem in this regard. They can be really hungry, and a lot of the food they eat just won’t get used, and they do need to eat more, and they will still gain weight. This does not violate thermodynamic laws in any way. It’s just that metabolism sets ground rules that your body will follow. I am hoping not to start any fights with these paragraphs, but I just really don’t want people to be given shit for being blasted with horrible fat-shaming treatment when they are legitimately hungry people trying to take care of themselves and live their goddamn lives. So that’s why I bothered to write these three paragraphs. Now we’re done. Your three paragraphs about body size shit are over, we are safe now.
So when I start looking up keto recipes and end up finding some woo-bullshit, I get a bit sad, because it just makes the rest of us look like idiots. When I read some article about how KETO IS SUPER DANGEROUS Y’ALL THIS WOMAN GOT OSTEOPOROSIS I just want to bang my head against a wall, because… you can have dairy on keto, just not bucketloads of milk. Calcium is still important. Proper nutrition is still important. You can get the things you need without carbohydrates (and if anyone wants to do their “aha! Checkmate! Cells need glucose, noob!” I’ll remind you that your liver is perfectly capable of manufacturing glucose from protein. It’s called gluconeogenesis. Move on from that one). So yeah, you can be malnourished on keto, like you can on any fucking food, if you don’t know what you’re doing.
When I read about how “Moderation in all things is important!” I just want to sigh, because you can’t actually do keto in a moderate way. Keto is, by definition, extreme, and extremes worry people – with good reason! But if you try to low carb in a moderate way, you’ll “bonk”, because your brain needs glucose or ketones, and if you’re getting enough carbs that you’re not producing ketones, but not enough carbs to feed your brain… fatigue. Brain fog. Just… don’t.
When I read about how keto will cure cancer, I almost want to vomit because… no. Just. No. It will not. Ever. Please don’t do that. That’s awful and irresponsible.
Guilt by association – or, rather, woo by association – pisses me off. It’s like people who ruin the benefits of physiotherapy by confusing physios with chiropractors (and yes, there are good chiropractors who don’t believe stupid woo, but it is much simpler to find a good physio). Or who decide that dry needling works so therefore the ancient wisdom of acupuncture is ALL TRUE. Or who notice that pharmaceutical companies are sometimes corrupt and publish their results in unethical ways and then decide this means that… medicine is bad and they should take ginseng or something. No. Noooooo. Shit is complicated.
There is a huge amount of inertia when it comes to finding out what works – and mostly that’s a good thing. We should be skeptical. There’s a tendency to diminish people’s self-reported successes – and that’s understandable too, because the placebo effect is powerful and real.
How do we walk the line between finding out what works and accepting that some of these things are enormously variable between individuals? How do we create a world where I can say “I eat keto” without someone wanting to shout at me about healthy whole grains and me wanting to slap them in the face with my lipid panels (and by the way, lipid panels are also not the be-all and end-all and that is another entire rabbit hole of crazy)? How can we find a balance between listening to people’s experiences, and also trying to apply evidence based systems that seem to work for the majority?
I don’t have an answer. I honestly don’t know. I find a real conflict in myself between my earnest desire to trust expertise and throw myself on the mercy of my specialists, and the realisation that I took a pretty giant nutritional leap off my own non-expert bat and found myself in less pain, needing less surgery, and less clotrimazole. I don’t know.
There are no simple answers. There are never simple answers. Sometimes you just have to tug at the strings and see where they end up. Just… try not to assume someone’s being an idiot because you associate something they’ve said with something stupid. Leave the door open to find things out in your own way, and leave it open for an expert to walk through it and talk to you about it as well.
If we need moderation in anything, perhaps that’s where it should go.
[Edited to add this postscript. A friend reminded me that my road to keto was even more haphazard than that, so, in précis: I was told to eat a low glycaemic index diet for my acne, on the theory that it might help with the hidradenitis that I later turned out not to have. This helped. Then eventually I got tested for fructose malabsorption after two other friends shared some TMI symptoms that sounded very familiar. That came back positive. So then I gave up wheat (which contains fructose, but crucially was my primary source of dietary carbohydrate) and reduced sucrose (because that contains fructose as well). Things got better, but then plateau’d. I briefly flirted with paleo before I learned that gut enzymes actually evolve really quickly and that there are more holes in that argument than in a good-sized block of Swiss cheese. That’s why I eventually noticed that trend of improvement regarding low carb. And then I read about ketogenic diets, and by that stage I was frustrated and grumpy and thought: what the hell. So that’s the story]