Many people with ME/CFS and Long Covid develop food intolerances and many of the food intolerances they had before getting ill have got worse. It can be quite hard to know whether or not this is happening to you but some good indications include:-
Irritable Bowel Syndrome type issues
Tiredness or other symptom exacerbation during or after food
In my experience though it is not always as obvious as that. There might be a food in something but in such low amounts you might not notice it or have a significant reaction but it might still be reducing your energy. I do recommend reading the NHS advice on food intolerances:-
https://www.nhs.uk/conditions/food-intolerance/
It does not address how common food intolerances are with ME/CFS and Long Covid but it is a useful reference point nonetheless. I would also stress that anyone with ME/CFS and many people with Long Covid have limited energy and everything they do can take some of that energy and that includes eating and digesting rich foods even if you do not have particular intolerance to them. So even if you have no food intolerances it is well worth looking at what you eat and whether it is the kindest to your energy levels.
There are several ways you can explore what foods may or may not be having a negative impact on you. The most popular I see people do is to try out particular diets that remove certain foods such as Histamine diets, Gluten Free, PK diet, Anti-Inflammatory diets etc. When you have a diagnosed condition e.g. I have high blood pressure – so I might go on a diet for that, that seems very different to me from just trying a diet in the hopes it will alleviate symptoms.
Trial Elimination Diets
With a Trial Elimination Diet you look at some foods that you feel might be causing a problem and try removing them one at a time slowly from your diet and see if it makes a difference. You might cut a food from your diet for 2-6 weeks and see if you notice a difference. It can be a slow process and it does involve monitoring and managing what you are eating and using a food diary but it can be a way to greatly improve your well being through not eating foods that you are intolerant to. It also has a huge advantage over some of the diets I have mentioned in that it is not such a blunt instrument. If you take say a histamine diet, very popular at the moment with Long Covid sufferers it eliminates coffee, alcohol, aubergines, mature cheeses and many others. It might be rather than having a general problem with histamines you have more specific intolerances and can have and enjoy many of these food types.
The advice on Food Elimination, Elimination and other diets is always to get proper medical advice first. There are two very good reasons for this. The first is radical diet changes can do a lot of harm and it is good to get the right advice first to make sure any dietary changes you make are in your best interests. The second is to cover our backs so as not to recommend anything that could lead to legal actions etc. The problem though is that whenever you go to get medical advice, if you even are able to get an appointment at the moment it is fairly unlikely you will be given any advice that is useful in terms of food intolerances. It seems an understudied area and not one it which you are likely to find or get the right advice on the NHS.
Elimination Diets
I am a strong advocate for doing an Elimination Diet. It is different from a Trial Elimination Diet in that instead of eliminating one type of food at a time you slowly reduce the types of food you eat until you are eating only a very limited variety of foods. These foods should be foods that you are most confident you do not have any issues with. For me that was plain chicken and rice. You cannot go suddenly to a very restricted diet or it will mess with your gut and your digestive system. You need to do it gradually over a couple of weeks or so.
I would warn against some of the protocols online on Elimination diets in that they presuppose what foods you will likely have a problem with. In my experience of people with ME/CFS and Long Covid whilst there are some frequent villains there are as many differences as similarities. Some of the foods I have a problem with were ones some of these online guides promise would be safe. I do not believe a one size fits all approach works and that is where an Elimination diet kicks in. I slowly increased the different types of food I was allowing myself to eat and I was recording this in a food diary. It was difficult as I cook the meals in the house and often I was having to make different food for myself as my wife and again make different food for my daughter. It was worth it though. Strangely when I introduced a new food to my diet it was much more obvious if it caused me problems than otherwise.
I did not do an elimination diet perfectly, I did skip a few corners and as a result it was not too onerous but equally might have missed a few foods that were problems for me. I identified I had issues with raw tomatoes, citrus fruits, alcohol, vinegar, many Chinese takeaways ( not sure if MSG or just soy sauce), many processed foods and fermented foods e.g. sauerkraut. My life is much better leaving out these foods.
I did find that I have a lot of problems with raw vegetables but I am not sure how much that is intolerance and how much it is a mixture of sudden changes in diets and the challenges that can be to your gut, the “body energy” involved in breaking down and digesting these foods and how much might be intolerance.
An elimination diet could take as long as 2 years to fully do. That can sound a crazily long time but it is only the first month or two where it really feels very restrictive as you are adding new foods quite often. In my case I was largely finished within 3 months and it took about 6-9 months. It was one of the best things I have done for my health.
It is ideal if you are doing this to get medical advice and dietician support but this is not always possible. My feeling is that whilst there is a short term loss of nutrition it is a fairly short loss and this could be countered with multivits etc. and it feels reasonably safe to me. Also if you are intolerant to foods that you are eating then that is doing you harm and it is harm that is fairly easy to avoid.
Knowing your Food Types
If you know your food types then you can be a foodie Sherlock Holmes and shrink the time and challenges needed a little bit whether you are doing an elimination diet or a trial elimination diet. Vinegar and citric acid share some properties so if you have a problem with one food type you might be cautious with the other. Similarly alcohol and fermented foods share obviously similar characteristics. If one food is causing you problems then it can be worth researching what properties it has and then that can help you pay more attention with those food types.
Conclusion
I recommend elimination diets because they do not cost anything and do not have a major downside beyond having a bland diet for a few weeks. I think they are something many people with ME/CFS should consider as they have helped me and some others who have tried them a lot. I also feel it is cheaper and more likely to be successful than other diets such as the currently popular Histamine Diets which presuppose where your intolerances and issues might lie. Whilst many people with ME/CFS have problems with alcohol not all do and there have been quite wide differences in foods that have caused problems. An elimination diet seems to me the most reliable way to go. Food intolerance and just wasting energy on food your body has difficulty processing is well worth exploring in my view.
If you do not feel you could or would want to cope with an Elimination Diet then using Trial Elimination may be an excellent way of exploring whether you have issues with some food types. It might take a lot longer to work out every food you have a problem with but equally you can probably hone in on some likely problems much quicker.
Ben