As part of my treatment I have eliminated a few things from my diet. I now avoid eating gluten, dairy, added sugars and alcohol. Although it seemed daunting at first to live without bread, pasta, desserts and even more so cheese it is really not as hard as it sounds.
Before I get into the ins and outs of how I manage to keep up this restrictive alimentation let me explain why I was asked to do so.
Bacteria feed on refined sugar so it really was a very simple equation for this one. When I eat sugar, it’s pleasing to the tastebuds for a few seconds then the disease I am actively trying to keep under control thrives from it. I was never a dessert type of person anyway so this one is a no brainer for me.
It’s a bit more complicated for gluten and dairy. Some people have theorised that pathogens also feed on these, but the main reason I have stopped eating them (on my doctor’s recommendation) is that they are physically draining food. You know the post big lunch sleepiness that you can get ? Imagine getting that when you’re already very tired. There’s a reason these diets are becoming extremely trendy. Just google “gluten free diet” and you will find hundreds of testimonies of people saying when they lower their gluten intake, their energy levels go up (that and some gassiness reduction apparently, glamourous). My body is fighting a pretty stubborn bacteria so to put all the chances on its side I have made the conscious decision to give it the best possible fuel.
Now there are many many different diets for people with Lyme’s disease, mainly because it often comes with side infections / diseases like candida, endometriosis or fibromyalgia, some of these requiring specific diets of their own. I have read that some doctors also advise their patients to cut out meat, carbs, root vegetables and try low fat but I must admit that I am not the biggest fan of diving down the Lyme’s disease diets hole because it is bottomless and anxiety inducing. I have found a diet that is maintainable and works for me so I will stick to that for now. This isn’t to say that I am not open to the idea of one day changing my diet whether to restrict it further or on the contrary to open it.
A much needed change of perspective
Before my diagnosis, food was purely a source of short term enjoyment. I would have meals made of cheese melted on a bed of bacon before an evening of drinking and paid very little consequences for them. I never felt physically bad or gained much weight. As a matter of fact when my doctor told me I would benefit from restricting my diet it hit me a lot harder than my diagnosis itself, because it was going to affect my daily life in a negative way. I was going to get rid of something that was pleasurable and I didn’t see what I would gain from it.
But I very soon did. Within a few weeks I started feeling more energised and clearer headed and within a couple of months my skin got clearer and my pains lessened. Obviously seeing these improvements helped me stick to the diet but in order to be able to maintain it I had to change the way I think about food. Because I could see consequences everytime I slipped up and ate something forbidden, I soon managed to see food as a fuel. I had a choice : give fuel to my body or to my disease.
Eating well has been a gateway to self care for me. Before Lyme I used to see my body as something I dragged along and used for fun (like most students I think). Then I got sick and it failed me, and I had to learn to still like it when I wasn’t quite as slim, pulled me down and held me back. This was particularly hard because I wasn’t mentally at my best at the time but I managed to find a balance. I would lower my expectations and my body wouldn’t bother me quite as much. We were coexisting more or less peacefully if you will. Since eating differently I have had to face the fact that my body reacts to what I do to it. Now I do a lot of things to maintain my physical and mental health and their best. (I will do a few posts on some of these things)
From substitutes to homemade
I also very quickly realised that eating substitutes wasn’t the best option for me. Firstly because I struggled to find some gluten free ones that didn’t have sugar or additives of all kind, secondly because I never got the same satisfaction from eating gluten free bread as I used to when eating a fresh baguette. I started really enjoying cooking for myself, got into meal planning and made food that was catered to me and still delicious. I don’t get the exact same satisfaction I used to but I get the same level of satisfaction from different things.
This doesn’t mean that I don’t have gluten free bread or pasta in my cupboard, because I pretty much always do, but they are not replacements for the staples their gluten equivalent used to be. They are there because sometimes I want a toast, and I allow myself to eat everything within the confines of my diet. I rarely find myself reaching for them though (partly because the ersatz are way more expensive than their counterparts). I also need to say that I am not perfect. Sometimes I crave pizzas and sometimes I eat them. They are my weakness, the only thing I truly miss and the only exception I make (rarely).
What if I “fail” ?
I often get asked what happens if I fail to stick to my diet and it’s a hard question to answer. It really depends how I am feeling before I do and on what I eat. I will say that sugar is definitely the worst. I vividly remember eating a cookie a while back and regretting it for over a week. My symptoms flared up noticeably and I paid the consequences for too long. Definitely was not worth it. With gluten and dairy I can often get away with it. I will get a bit of stomach pain, sometimes nausea, often tiredness the next couple of days but if I felt good before I ate them and I don’t work super early the next day I can usually cope. I do think that is the case because I eat good food 99,9% of the time, the symptoms would very quickly add up otherwise.
My diet VS others
The stigma surrounding particular diets is also worth mentioning. I get judged by waiters when I ask if a dish has dairy in it, or if I can have it without the bread. It used to affect me quite a lot and I used to be very apologetic about it. Now -although I still remain very polite, I realise I am making their job harder- I am much more confident when ordering food. I feel more confident in my diet because I see its effect and therefore it is easier for me to be comfortable with it. I now live in the UK and I must say that I have it way better here than in France. Not only does the food industry cater for my needs a lot more but I also get judged considerably less.
The trendiness of the gluten and dairy free diets serves me because it means people are more and more confronted to it. It also makes my life harder because people often think I am just a fussy eater, or watching my weight or following a trend. I personally don’t believe these are things you should be judged for but people seem to think it’s acceptable. That problem is one of the many disadvantages of having an invisible disease but I will do a post about that.
Regarding alcohol (which hasn’t been mentioned so far), I have much less to say. I don’t drink it because it is very sugary, and because my liver is already struggling so I really don’t need to put any more strain on it. I really only miss having a glass of nice wine but only when I think about alcohol specifically, because someone asks me. Seeing other people drink doesn’t make me want to drink (I am usually very happy with juices, herbal teas or water) and I never feel the urge to get drunk. The only thing that makes not drinking a bit of a hassle is the effect it has had on my social life, but I will make a post providing more details about that because this one is getting quite long.
To sum up : no you don’t need to feel sorry for me, yes I take pleasure in eating, I probably love my diet more than you do yours because on top of satisfying my taste buds it keeps me in good shape and I promise it really isn’t as hard as it sounds.
Bonus, the staples of my diet :
- potatoes / riz / quinoa / sweet potatoes
- kidney, butter and black beans / lentils / red split lentils / chick peas / garden peas / corn
- cucumbers / carottes / tomatoes / radish / mushrooms / lettuce / chicory
- courgettes / leek / onions / mangetout / green beans / cauliflower / broccoli + vegetables in season
- Walnuts / cashews / hazelnuts / macadamia nuts / brasil nuts…
- Seeds of all kinds
- Coconut milk (and since recently coconut yoghurt)
- Vegetable broth
- Apples / clementines / mangos/ persimmons / nectarines / plums / prunes / pineapples / bananas / frozen berries and any other fruit I can find