Meg Davidson
Member
I've had ME/CFS for decades and started investigating the possibility that food sensitivities could be part of the problem 15 months ago. An exclusion diet uncovered sensitivities to amines and glutamates and intolerance to most of the FODMAPs. Eight months ago small intestinal bacterial overgrowth (SIBO) was diagnosed following a hydrogen breath test.
I always considered my digestive symptoms (diarrhea and flatulence) the least of my problems. It's the brain fog that is the most disabling part of my illness by far. I was feeling pretty good as long as I didn't eat the things I had discovered I reacted to - in fact I regarded myself as almost normal, although not cured because I was aware the dietary restrictions were simply managing my symptoms. But because SIBO could be contributing to my various neurological symptoms as well as my other food sensitivities, I agreed to treat it.
A very expensive course of Rifaximin was unsuccessful. I then put myself on the Specific Carbohydrate Diet designed to starve the bacteria in the small intestine - which can take years. The diet was pretty restrictive once I'd also excluded amines and glutamates. I was feeling well on it, but my dietician was worried I wasn't getting enough Vit B1 (thiamine) which she said could lead to permanent neurological damage.
She suggested an elemental diet. This is is the stuff they tube feed people with in hospital. It contains all the vitamins, minerals, carbs and fats you need to support life in liquid form. You ingest nothing but this stuff for 2 -3 weeks. Because it is absorbed straight through the gut walls no digestion as such is needed and your gut has a complete rest. Meanwhile, the bacteria have nothing to eat and they die.
I have to say it was easier than I expected. There are a couple of different brands of elemental diet. Most people on the net report using Vivonex but I was was prescribed Elemental 028 Extra, made by Nutricia. The drink was really quite palatable. I certainly missed real food but didn't seriously crave it, didn't get hungry after the first day, didn't lose much weight and didn't experience the symptoms of bacterial die-off that other people report, probably because I'd already gone through most of that with the various exclusion diets I'd been on.
The thing that astounded me was how well I felt on this diet. After a week all my symptoms went away except tingling in my feet, and I can live with that. I was bouncing out of bed every morning where before I would stay there until the last possible moment. I had loads of energy, was physically stronger, could virtually run up hills that before I needed frequent rests on, could concentrate and think clearly and incisively and felt cheerful and calm. I have not felt like that for several years.
The three weeks was up on Thursday evening. My dietician said I could start reintroducing real food, starting with chicken and fish. I ate a 185gm tin of tuna and went to bed.
When I woke in the morning I was horrified to find that all my neuro symptoms were back - the buzzing, vibrating sensation in my body, the weakness, shakiness, dizziness, inability to focus my eyes, fatigue and brain fog. All from one tin of tuna. Coincidence? Some might say so. I suppose time will tell. I'm back on the elemental diet and when the symptoms clear I will repeat the experiment, if I am brave enough.
I'm still trying to work out what it was about the tuna that affected me so badly. Thirty-six hours after eating it the symptoms are still getting worse. The exclusion diet I was on previously named tinned fish as a source of amines, and although I knew was sensitive to amines in large quantities I have previously eaten tuna with no ill effects. Or so I thought. The elemental diet appears to have swept the slate clean and the effects of various food chemicals are shown up very clearly.
I will keep you posted.
I always considered my digestive symptoms (diarrhea and flatulence) the least of my problems. It's the brain fog that is the most disabling part of my illness by far. I was feeling pretty good as long as I didn't eat the things I had discovered I reacted to - in fact I regarded myself as almost normal, although not cured because I was aware the dietary restrictions were simply managing my symptoms. But because SIBO could be contributing to my various neurological symptoms as well as my other food sensitivities, I agreed to treat it.
A very expensive course of Rifaximin was unsuccessful. I then put myself on the Specific Carbohydrate Diet designed to starve the bacteria in the small intestine - which can take years. The diet was pretty restrictive once I'd also excluded amines and glutamates. I was feeling well on it, but my dietician was worried I wasn't getting enough Vit B1 (thiamine) which she said could lead to permanent neurological damage.
She suggested an elemental diet. This is is the stuff they tube feed people with in hospital. It contains all the vitamins, minerals, carbs and fats you need to support life in liquid form. You ingest nothing but this stuff for 2 -3 weeks. Because it is absorbed straight through the gut walls no digestion as such is needed and your gut has a complete rest. Meanwhile, the bacteria have nothing to eat and they die.
I have to say it was easier than I expected. There are a couple of different brands of elemental diet. Most people on the net report using Vivonex but I was was prescribed Elemental 028 Extra, made by Nutricia. The drink was really quite palatable. I certainly missed real food but didn't seriously crave it, didn't get hungry after the first day, didn't lose much weight and didn't experience the symptoms of bacterial die-off that other people report, probably because I'd already gone through most of that with the various exclusion diets I'd been on.
The thing that astounded me was how well I felt on this diet. After a week all my symptoms went away except tingling in my feet, and I can live with that. I was bouncing out of bed every morning where before I would stay there until the last possible moment. I had loads of energy, was physically stronger, could virtually run up hills that before I needed frequent rests on, could concentrate and think clearly and incisively and felt cheerful and calm. I have not felt like that for several years.
The three weeks was up on Thursday evening. My dietician said I could start reintroducing real food, starting with chicken and fish. I ate a 185gm tin of tuna and went to bed.
When I woke in the morning I was horrified to find that all my neuro symptoms were back - the buzzing, vibrating sensation in my body, the weakness, shakiness, dizziness, inability to focus my eyes, fatigue and brain fog. All from one tin of tuna. Coincidence? Some might say so. I suppose time will tell. I'm back on the elemental diet and when the symptoms clear I will repeat the experiment, if I am brave enough.
I'm still trying to work out what it was about the tuna that affected me so badly. Thirty-six hours after eating it the symptoms are still getting worse. The exclusion diet I was on previously named tinned fish as a source of amines, and although I knew was sensitive to amines in large quantities I have previously eaten tuna with no ill effects. Or so I thought. The elemental diet appears to have swept the slate clean and the effects of various food chemicals are shown up very clearly.
I will keep you posted.
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