Monday, 1 September 2014


This post is personal, and it's health-related. If that is the last thing on earth you want to read on this blog, I'm sorry and suggest you go somewhere else for today's reading. It's personal, and I usually try to limit personal things here, due to different reasons - but this is something I feel a need to blog about.

There's such a thing as invisible illnesses. Invisible illnesses are, well, invisible (just like the name hints), and that is one of the hardest things about them.
If you break your leg, you go to the hospital and get a cast - and everyone can see that you have a damaged leg and will thus not be able to do some things. However, if you have an invisible illness...

And there are many, many invisible illnesses - in all levels of severeness. Diabetes. Lupus. Chronic Fatigue. Hashimoto's. Depression. And lots and lots more. Being invisible, it's quite probable that nobody will tell you to go see a doctor. To make things even more nasty, these things can sneak into your life better than any ninja - they can come on so gradually you never even realise something might be wrong, until you suddenly realise that things are so bad you can't do this, or that, and that too.

I've been losing energy and instead gaining weight slowly and steadily over the past few years, with no discernible changes in my eating patterns. I've also started getting slightly swollen feet in summer heat. It crept in really slowly, really gradually, and I could not see any pattern to when my feet would be bloated and when they would not. Movement helped, sometimes, as did propping them up. Since my legs are too short for most chairs, I thought maybe sitting on too-high seats was partly to blame. I tried drinking lots and I tried drinking little, without effect, and finally I just sighed and thought it might be a part of getting older, and the body's changes that go with it.

Then the last bit of last year and the start of this year got very, very busy - big museum projects, preparing events, and the NESAT conference. I was feeling fatigued before, but after NESAT, it seemed like I just could not recover. I had no energy left. I woke up thinking about the things to do that day, feeling good enough to tackle them all, but by the time I had been to the bathroom and found my way the 6 or so metres to my desk, I was all tired and lackluster again. Clearly, something was wrong. Really wrong. The ninja had finally stumbled into the spotlight.

So I did what I always do when something is wrong, or a problem: I read the Internet. This time, I read what felt like all of it. And found out that I might have issues with my thyroid, and possibly general hormone levels, and that both might be connected to auto-immune problems. And those, in turn, might be connected to food intolerances that are so low-level, or developed so gradually, that I just never keyed on to them. I got myself a doctor's appointment, but that would be about two weeks of wait. Clearly, something had to happen before that.

Since I had already read about all the Internet (haha), I had stumbled across lots of sites connecting gut health to overall health, especially to auto-immune issues and disorders. They all recommended special diet versions that differ in details, but are all basically aiming to rule out anything that might irritate at first, then gradually re-introducing elements to test whether they are tolerated or not. So I decided to take the plunge, and I opted for one system recommended by a doctor that specialises in hypothyroid issues. (Basically, it was just to pick one of them. A proper strict one, because I like to jump into things full throttle. Even when I'm sick.)

That was a diet that rules out about everything except vegetables, meat, fruit that are not too sweet, and herbs. That was a large change, but to my great relief, it did work almost instantly. I won't count the first three days or so of it, because you never know how much of a placebo-effect that was, but after the first days, I lost quite a bit of water weight, the swelling in my feet went down, and I had more energy again. Still not up to normal levels, still needing more rest than usual, but it was definitely an upward trend.

Meanwhile I had that doctor's appointment, and nothing looks so very bad - I lacked a few vitamins and minerals, and thyroid levels were not perfect, but also not too far out of the ordinary. Now I am in the stage of figuring out what is good for me, food-wise, and what is not. That is a lengthy process with a goodly amount of documentation and deduction (and some guesstimates), and it makes eating not at home a little difficult - so I have turned into a person that lugs food around, just in case. The first few culprits are already found, too - though my tastebuds really love fried or cooked onions, the rest of me does not agree that they are a good thing. And then I had two oat biscuits recently, which tasted lovely but raised havoc later. There are a lot of things left to test and try, but at least I can find out what works and what doesn't. (There is, by the way, no other sure way to determine food intolerances but the elimination-provocation approach; any tests are iffy at best, a waste of money at medium, and harmful due to wrong outcomes at worst.)

The curiousest thing, to me, is that I never had any discernible issues with any of the foods that are now off-limits or suspect before. It just drained my energy and made me less healthy overall, to a point where I could not function well anymore. If this happened to me, it could happen to someone else, with as little clue about why things become harder as I had. And that, dear readers, is why I think this is an important thing to share.

So... should you suspect a food intolerance doing bad things with your guts and your life, I can tell you, from my own experiences, that an elimination diet may sound awful, but might be just what you want. I won't say it is easy - you have to go without a lot of things for a few weeks, after all, and with many things for quite some time until you have re-introduced them. It's not all bad, though. My appreciation for high-quality foods, my cooking-fu, my knowledge about the human innards and the human immune system, and my resourcefulness in packing food* have all benefitted from this diet change. As has my appreciation for my friends, who after a short second of being shocked did their very best to support me and went several extra miles, in some cases, to make sure that I could eat with them. Friends are wonderful. Feed them to the best of your abilities - they might return the favour one day when you really need it.

* Very soon, I developed a more-or-less-healthy apprehension that I might get hungry and not find something that I could eat, resulting in packing emergency food (and plenty of that) in case of travel. The masses of food that I brought to Herzberg? Ridiculous. (Just enough, though.) Considerable amounts of food also travelled with us to England, and then through England, for our vacation. (Optimised for packing space and weight-to-nutrition-ratio, of course.)
For parties and similar things, I also found that it is immensely helpful to have something to eat that is both delicious or appealing to me and safely within the limits of the current diet - just in case everyone else enjoys something I cannot have. Food envy, to me, was the thing I feared most, and the "pack your own" strategy works beautifully for that.


Harma said...

Check for lactose and fructose intolerance or coeliakie. Those are very common. Lactose is a nasty one. You already told me about the cheese problems, so that is one to watch. The best way to be certain about lactose intolerance is to try some lactase pills to digest the lactose in milky products. Klaas has a lot of problems with pears and some of other raw fruits. Apple juice and cooked pears are no problem though.

Anonymous said...

Related but not... I had spectacular lactose intolerance for nearly ten years until I started the job I'm now in. The repackaging of 'stress' into an entirely different form and the sudden increase of sleep sorted so much out I'd never have believed it if I'd been told beforehand.


a stitch in time said...

Lactose intolerance I definitely have not - I have successfully re-introduced all kinds of dairy things, with no problems at all. But yes, I know that a lot of people have problems with that on top of other issues... I'm speculating that I might have issues with either wheat or gluten in general, but have not dared to test-eat the stuff yet. The day will come, though.

lyorn said...

You probably already found that there is a big disagreement about what values should be checked in case of thyroid issues, and what the numbers mean. A set of numbers considered perfectly OK by one doctor will trigger further checks with another and a Hashimoto diagnosis with a third...

Teffania said...

There is wonderful work being done on fructose malabsorbtion by Sue Shepherd at Monash Uni in Australia. The keyword to goggle is "FODMAP". There are medical breath tests available in Australia which can diagnose problems with digesting various sugars (fructose, sucrose, etc), but they generally take hours where you consume the sugar then look for the effect. 3 of the worst ingredients for fructose malabsorbtion are: onions, apples, wheat (but not gluten itself) of which you've mentioned 2 as major culprits....