Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Food additives that cause a crash

Discussion in 'General ME/CFS Discussion' started by kangaSue, Jul 25, 2015.

  1. kangaSue

    kangaSue Senior Member

    Brisbane, Australia

    Came across this article while researching food additives that could cause motility disturbances and thought you guys would be interested in the following account of a food additive sensitivity that caused crashes in a CFS case;

    [1024] 319, 320: Antioxidants and chronic fatigue (May 2011)

    In 1995 I gradually developed CFS and was invalided out of work a year later. In late 1999 I began the RPAH elimination diet. Ten days later my brain fog and fatigue were greatly diminished. Challenges confirmed intolerance to dairy and gluten – which I had eliminated years previously – and indicated intolerances to salicylates, amines and glutamates.

    In the following years I had a few relapses, usually lasting for no longer than a couple of weeks. The exception was a six months relapse, which ceased five days after I decreased my intake of vegetable oil and changed from canola to sunflower. (Both oils had no additives listed on the label)

    In January 2007 I was feeling quite well and had no significant CFS relapse for a couple of years. At the beginning of February my energy plummeted. I needed to spend at least twelve hours a day lying down, instead of eight hours. Physical fatigue and brain fog returned in force. Six weeks later I bounced back, and was quite well for a few weeks, then I plummeted again. These irregular fluctuations continued throughout the year, but the highs got lower and the lows got lower. I became much more sensitive to amines.

    In early February 2008 I went to Woolworths for grocery shopping. I picked up a bottle of sunflower oil and glanced automatically at the contents. In a way, I was not really looking because I ‘knew’ that nobody put additives into sunflower oil in Australia. But there it was: ‘Sunflower Oil, Antioxidants E319, E320’. I squeezed my eyes tight, reopened them, and read the same thing. Then I grinned and imagined myself leaping into the air and clicking my heels. Yes!

    I phoned Woolworths and was told that their sunflower oil had E319 and E320 since the beginning of 2007. But sometimes my wife bought sunflower oil from Coles. No, Coles had never put antioxidants into their sunflower oil. We take about six weeks to consume a one litre bottle of sunflower oil. I looked back in my diary and found that the length of my ups and downs were in multiples of six weeks. We swapped to Coles sunflower oil. Eighteen days later I was fully well again. – Ian, by email
    WoolPippi and AndyPandy like this.
  2. Valentijn

    Valentijn Senior Member

    It sounds like the major (only?) symptoms were fatigue and brain fog. That wouldn't qualify as CFS under any definition except Oxford.
  3. AndyPandy

    AndyPandy Making the most of it

    Hi @kangaSue. I read that article on the fedup site a while back. I also read Sue Dengate's book - I think that is her name. I went on a strict elimination diet, got tested for various food allergies and intolerances and modified my diet quite a bit. Modifications include removing gluten, dairy, soy and numerous other identified problem foods, minimal salicylates, glutamates and FODMAPs. I also modify for diabetes (skinny type 2) and genetically high cholesterol.

    I have recently been told that I may have histamine or MCAS problems, but it seems that I have already taken out most of the high histamine foods for other reasons.

    My cognitive function has improved markedly since I was severely ill in the early stages. I cannot say if this was in any way due to dietary modifications. I did think at the time that minimising salicylates made a difference to cognitive function, but I can't say for sure.

    I believe that changing my diet has helped my IBS improve. I have also discovered that I have the genetic potential for coeliac disease and gluten intolerance and if I have any gluten or dairy in particular I pay for it later with IBS, pain and fatigue.

    However, these are just small improvements in the overall picture. I remain quite physically disabled - bedbound/housebound, wheelchair, shower chair etc. So that key aspect of my ME/CFS hasn't been improved by diet.

    Everyone is different and I am happy to read that avoiding those particular additives was life changing for that person.

    Best wishes, Andy
    Last edited: Jul 25, 2015
    ahmo, Tammy and maryb like this.
  4. WoolPippi

    WoolPippi Senior Member

    Yay! well done.
    amazing how well the body reacts when we don't bother it with extra strains.

    we have to be food sleuths, don't we. :cautious::thumbsup:
    Tammy likes this.

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