I am sure I am not alone when I say I have read so, so much about diet since I was diagnosed. The amount of information and advice is a little bewildering. I want to say first of all I am not advocating one diet or another, I have no expertise in this field whatsoever. All I am doing is sharing what has worked for me so far.
When I saw my Consultant he recommended that I go gluten-free to help relieve my symptoms, particularly fatigue and stomach discomfort. I have followed his advice but to be honest, I didn’t find any reduction in my symptoms other than my stomach was less uncomfortable, I definitely notice more discomfort if I inadvertently eat gluten now.
In the following weeks, I met a good friend who is an independent dietician and a very good one! We spoke at length about my symptoms and she recommended following a low FODMAP diet. The idea being that these foods promote a healthy gut which leads to less irritation and inflammation and thus a reduced response from the body and therefore less ME/CFS-type symptoms. I am not 100% low FODMAP but I am fairly close and it seems to help with stabilising my energy levels.
I was also recommended the anti-candida diet which seems to do a similar thing but perhaps is more restrictive. I have cut out processed food almost entirely focussing on organic and fresh food wherever possible. I used to rely on caffeine to get me through the day and had a pretty serious coffee habit! However, I developed prostatitis and was referred to a Urologist. As part of my treatment, he strongly advised cutting out all caffeine – no tea, coffee or fizzy drinks. This has helped me a lot as my energy levels, although still low, are more even with fewer peaks and troughs.
One of my neighbours is training to be an Herbalist and has a vast knowledge of ME/CFS. She recommended that I try a tea made from cleavers, also known as clivers or sticky-weed. I was a little sceptical at first, and I don’t mind saying very nervous that it would taste utterly disgusting! But I have been pleasantly surprised and I can feel the benefit of taking it. The tea helps to cleanse the lymphatic system, to help the body get rid of toxins. It isn’t a magic bullet, if it cured ME/CFS it would have been discovered long ago but it does help.
My last great obstacle is refined sugar. I am really struggling to cut this out. I just crave the energy boost and when you are exhausted most of the time the cravings are almost constant. I think my weight is suffering because of it and I need to be more disciplined, perhaps replacing some carbs with protein would help too.
When you have days filled with very little, what once was mundane before now takes on new significance. For me, having some toast is a big deal and I absolutely love it! But I have to be careful not to see food other than what it is – a necessity for me to survive. It is not a reward for doing something, nor is it a remedy for boredom. That doesn’t mean I can’t enjoy what I eat, of course I can. I just have to eat the right food for the right reasons.