Last Friday marked the end of the 60-Day Elimination Diet (ED); the first stage of trying to find some definitive answers as to what’s causing my flare-ups of hidradenitis suppurativa. The aim of the ED was to try and see a significant reduction in symptoms so that, during the upcoming reintroduction phase, it would be much easier to identify which foods were triggering the flare-ups. Also, if the symptoms did reduce during the ED, then that would be sufficient proof that I had an intolerance (though it’s important to point out that genes and hormones can also play a significant part in triggering most autoimmune diseases).
So what have I learned? Tons and tons, and not all of it to do with HS. I’ve been through every emotion possible, and my body has undergone as big a learning curve as my brain has. It really is no understatement to say that doing this elimination diet has changed my life, and anybody who’s considering doing it – whether you have HS, another autoimmune condition, or you just want to re-evaluate the way you eat – well hopefully the things I’ve found out will help convince you to give it a go.
1. We really are what we eat
Before doing this, I thought my diet was pretty healthy: plenty of chicken stir fries, fat free yoghurt, fresh fruit etc, but yeah, I liked a drink or ten, especially when out watching the match with friends, or round at my parents’ house of a weekend, putting the world to rights over a few bottles of Pinot.
But when I was forced to take notice of every single thing I was ingesting, I wasn’t prepared for discovering just how much CRAP I used to eat; crap which is proven to wreck your gut, killing good bacteria and providing a ten-lane superhighway for the bad bacteria to pass into your bloodstream and trigger conditions like IBS, Crohn’s Disease, Lichen planus, migraines, constipation and, of course, HS.
From the extensive research I’d done, I knew that, in addition to the millions of banned foods, I also had to completely avoid anything which contained high fructose corn syrup, modified maize starch, aspartame, emulsifiers, stabilisers or preservatives. The only problem was, that stuff was in everything, even my favourite Blue Dragon Sweet Chilli & Ginger stir fry sauce. So the only thing to do was to go back to basics and prepare/cook everything – and I mean, everything – from 100% fresh and unaltered ingredients. That ruled out around 95% of everything in a supermarket.
As an interesting exercise, next time you’re doing the weekly shop, stop and read the labels of everything you’re putting in your trolley. I guarantee you’ll come across ingredients you’ve never heard of in everyday products and familiar, well-known brands; ingredients which have many other, non-food uses. For instance, most breakfast cereals contain something called BHT (Butylated hydroxytoluene), an additive which prevents oxidisation. BHT is also used to make jet fuel and embalming fluid, and there’s now increasing evidence that BHT is a carcinogen. Salad dressings and tubs of ice cream contain an additive called E405 (propylene glycol alginate) which is used as a thickener. It’s also used to make beer. Thing is, E405 is one of the principal ingredients in antifreeze…
I could fill an entire blog about what really goes into the food we eat but to avoid completely boring people to death, I recommend a brilliant book called Food Unwrapped by Daniel Tapper. It asks questions such as “Is it OK for a vegetarian to drink beer?”, “Why are vitamins added to Corn Flakes?” and “Are artificial sweeteners healthier than sugar?” and is a funny & entertaining read that’ll really make you think twice about most of the stuff you have in your cupboards.
2. There’s no room for cheating
Doing an elimination diet is serious business. It’s different from a ‘regular’ diet in so many ways, but the two main reasons are: a) the aim is not to lose weight, but to clear your system of potential trigger foods; and b) you can’t ‘cheat’ or ‘treat’, not even one time in the whole 60 days.
I’ve done loads of diets before, with the express aim of losing weight. During all of them, without exception, there were times when I fell off the calorie wagon and ended up in a space ship packed full of beer, wine, pizza and chips in gravy. I’d get up the next day and say “oh well, one slip isn’t the end of the world, I’ll catch up again this week’. And I usually did, so no harm done.
But with an elimination diet, the whole point of it is to cleanse your system of all potential food triggers. Only then, will you be in a position to begin reintroducing foods one by one, until you happen across the one which is hurting you. Because of this, even a single transgression is one too many, because you risk contaminating your gut with perhaps the one thing that’s making you sick, but you’re not going to know that, unless you have a poison-free body in the first place.
There were plenty of times during the last 60 days when I’d have killed for a small piece of cheese, a can of Diet Coke, and definitely an ice cold beer. But succumbing even just a little bit would have put me right back to square one. On standard diets, you can kid yourself that the occasional overindulgence doesn’t matter, as long as you compensate the next week. But with the elimination diet, one morsel of a banned food will kill the entire objective.
If you’re thinking of trying the elimination diet, for whatever reason, you must be committed, it’s that simple. It’s incredibly difficult, especially organising meals around other people, being sober around other people, and having to decline social invites which you know might tempt you to cheat, so if you’re not 100% committed, then you’re going to fail. To get over this, you just have to ask yourself one question: which do I prefer – having that nice cold beer right now, or living with pain for the rest of my life? If you don’t know the answer, then the elimination diet (and the potentially years-long reintroduction diet) are not for you.
3. You must learn to read the future
Kind of related to No.2, this is to do with combating temptation, discouragement and those depressing times you’re going to encounter, about once a week, for the duration of the ED. No-one is superhuman, so you are going to have moments when you just don’t care anymore and you’re going to have that pizza/sandwich/beer no matter what anybody else says. Just one isn’t going to hurt, is it? Well yes, it is, and it’ll hurt a lot. Not just that, but as soon as you’ve satisfied whatever craving you’ve got on Day 2/Day 12/Day 42, you are going to hate yourself. Whether you’re an hour, a week or 6 weeks in, the point is you’re on the journey. The hard part is over, you’ve made the decision to change things and here you are. So to throw that all away for the sake of some cream sauce with your fish, or a tomato in your salad, makes no sense.
The next time that happens, just stop and fast forward to the morning after, when you’ll wake up and get hit with that horrible realisation that you fell off the ED wagon for no good reason, and now you have to start all over again. You can’t catch up and you can’t neutralise the bad stuff. You have to go back to square one, there is no alternative. Imagine the disappointment and how angry you’ll be with yourself, and for what? It’s not an easy regime, but at the end of the day you have 100% control over your decisions, so make the right ones. It’s just 60 days out of your entire life and you’ve been suffering with pain for years. If you want years more of that pain, you know what to do. If you don’t, then you still know what to do.
4. You must know your own limits
Because of the above, it makes sense to know where your temptation threshold is, so you can make sure you don’t cross it. For my part, I knew right from the start that food would not be the major issue, but drinking would be. I love going out with friends, whether it’s to the match, for dinner, even just at one another’s houses and, inevitably, alcohol plays a part in that. With family, too, we love getting together and cracking open a few bottles on a Sunday afternoon, so to know that I wouldn’t be able to partake for what seemed like a lifetime, was a tough concept to get my head around.
For the first couple of weeks on the ED, I deliberately kept my head down, because I knew I needed time not just for me to get used to the idea of being sober, but also my friends and family needed that time, too, to make the adjustment in their own heads (believe me, this was a big deal for all of us!).
As the weeks went by, I was gradually able to go out more and more, and to not let the interminable glasses of soda water bother me too much. But there was never a time when I got used to it. I’m sure, too, that there were times when my friends felt awkward inviting me out at all, in case I was tempted to have a drink. I don’t think that ever happened, which I’m glad about as that would honestly have made things a whole lot worse, as though people think I’m only worth the company if I’m drinking. But as I said above, we are 100% responsible for our own decisions and, had I fallen off the wagon at any time, then that would have been my call to make, and my guilt to bear, no-one else’s.
The point is, I knew when I started this thing what my weak areas were going to be, so I actively took steps to make sure I avoided those situations where I could have slipped up. Only when I felt strong enough to face those situations head on, did I go ahead and try them out. Thankfully, I passed all the tests, but I’d be lying if I said I wasn’t tempted every single time I saw a pint on the table (it was the same for cheese, bread, pasta, potatoes etc). Again, you remind yourself why you’re doing what you’re doing, and suddenly saying ‘no’ doesn’t seem so difficult.
5. Be patient, and listen to your body
I think I was expecting instant results when I began the ED, as though a week without pasta would suddenly see my symptoms disappear. Certainly, those first few weeks drag like hell, there’s no sugar-coating it (because we don’t eat sugar, right?) but, sure as you like, things started changing, sometimes for the worse, but mostly for the better. Like any detox, your body likes to let you know how it feels when you start giving it new things or depriving it of favourites. For the first month I had terrible skin breakouts, insomnia, low and high energy spikes, and an inconsistent attention span. Basically, it felt like my body was shutting down entirely. I thought this was a bad thing – I felt like crap and my HS was no better – but then I accepted that it takes time to flush out all the rubbish that had been inside of me for decades, and I just had to grit my teeth and get on with it. I then learned to actually love (yeah, right) each spot that erupted every morning, because it was one more bit of poison leaving my system. By Day 55, not only had the condition of my skin, hair and nails improved dramatically, but my HS symptoms had receded to the point of remission, and I no longer had cravings for stuff like pizza, cheese and Big Macs; cravings which had their root in sugar. I’d never thought too much about sugar before, as I’ve never had a sweet tooth and, to me, sugar meant chocolate and fizzy drinks and the white stuff people put in their tea. But sugar is sugar, whether it’s in a baked potato or a strawberry gateau and, since I’ve drastically cut down on sugar in all its forms, my body is finally giving me a big thumbs up.
6. Do the maths
Knowing what you’re eating and making sure you’re getting every vitamin and mineral you need, is vital if the ED is to be a success for you. There are tons of online articles/apps which help you keep track of calories, carbs, sugar and fibre. If you also want to lose weight on the ED (very likely, due to the very long list of banned foods), then it’s a simple case of eating fewer calories than you burn. It’s not rocket science. Eat 1500 calories, burn 2000, lose weight. If you’re on the ED to combat an autoimmune disease, then do your homework as to which minerals you might be deficient in (most AI diseases have a direct link to element-deficiencies), and make sure your meal plans include the appropriate foods to give you those minerals in a natural form. Personally, although I eat a lot of zinc and magnesium-rich food, I also take zinc and magnesium supplements, because I know I’m super-deficient in those minerals, like many HS sufferers. Your own requirements may be different, but maintaining the necessary balance of carbs, sugar, fibre and minerals, according to your condition, means you’re not saddling your body with any extra work to do.
7. Keep your eye on the prize
Let’s face it, no-one’s going to choose to do an elimination diet unless it’s absolutely necessary, or you’re a masochist. I’m well aware that, over the past few weeks, I may have come across as one of those carrot-munching hippies eager to espouse the evils of anything that doesn’t grow out of the ground or have a happy life gamboling around the fields. But the truth is, my goal has always been the same, and that’s to get my life back. True, I’ve learned some astonishing things along the way, and I can’t guarantee that I won’t bore all my friends and family to death over the coming weeks and months about how sugar comes from Satan, but the very fact that I’m miles further forward now than I’ve ever been sitting in a doctor’s surgery or lying in an operating theatre, is proof enough that there is a massive light at the end of the tunnel for anybody currently living in the shadow of an AI disease. I don’t think I’ll ever be able to eat ‘normally’ again, not that I really want to, but knowing that I am probably more in control of my disease than at any point in the miserable past, is all the focus I need to keep on going.
The next stage
By last Friday, then, I was actually confident enough to say – for the first time ever – I am in remission. Even sat here now, I can’t quite believe it. Looking back not just on the last 9 weeks but also the last 9 years, I simply couldn’t envisage a time when I’d be able to just sit, walk or run about normally without being aware of my HS. Most sufferers will tell you there are good days and bad days, but all days are defined by HS. It dictates everything, from the level of activity you can do on any given day, to how you feel and behave mentally. So to get to a stage where HS simply does not have that kind of control over me any more, is empowering and a little bit emotional. I’ve also lost over a stone, and I’ve never felt better.
That’s not to say that every blister and mark has disappeared, because they haven’t, and I’m also aware that an eruption could occur at any time but, at the moment, it’s like the HS has been put into suspended animation. I can see it, but the beast is in a very deep sleep. Now all I have to do is find out what wakes it up, so I can eradicate the guilty party forever and, hopefully, send HS packing once and for all.
So now it’s time for the Reintroduction Phase – one food to be reintroduced each week until I hit the trigger jackpot. I’d like to say I spent a considered amount of time deciding which food would be first to come back to the fold, but I didn’t. The answer was very, very simple – wine – and I had my first glass in 60 days, on Friday 13th March.
To find out how that went, stay tuned.
60-Day Elimination Diet: total weight loss: 18lbs (1 st 4lbs)
** If you’re suffering from Hidradenitis suppurativa (HS), then I strongly recommend you getting a hold of Tara Grant’s book “The Hidden Plague” which is packed full of information and advice on how to go about healing yourself. The book is on sale through March @ $3.99 for the Kindle edition, which is a massive saving. **