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 intolerances - advice needed please

Discussion in 'Gastrointestinal and Urinary' started by Smith, Aug 28, 2015.

  1. Smith


    Hello all

    I have read it is common for people with ME to develop food intolerances or food allergies.

    But how to test for these accurately?

    Here in the UK there is the York Food test - but most nutritionists/ dieticians do not recommend it.

    I read that an exclusion diet is the only real way - but when you have so many symptoms and so many factors that influence those symptoms, it seems impossible to do this properly.

    I sense that during a crash I am probably becoming intolerant to foods but I don't know which ones or why.

    Ok, any help or advice much appreciated!
  2. Plum

    Plum Senior Member

    I did the FoodDetective test as it can be done at home:

    However it only showed up some of my allergens. I have now been diagnosed with eosinophilic esophagitis and am allergic to a lot of foods. I now follow the Autoimmune Paleo diet with some additional exclusions. I think it is a good diet to start with as it excludes most common food allergens and sort of gives you a clean slate to start reintroducing foods from once you've done it for several months.

    There is lots of info online about it as well as how and when to trial foods.
  3. NilaJones

    NilaJones Senior Member

    I have found an elimination diet extremely helpful, but I was focused on one symptom: inflammatory pain in my connective tissues. I did notice, though, that some of the things I reacted worst to gave me increased fatigue and malaise as well (wheat, for example).

    For me, for most things I react to, the reaction happens within 30-45 minutes and is VERY prominent. Not something I can be uncertain about.

    I have found FEW things where I have a mild reaction, e.g. I have to eat them every day for a week before I realise, yes, this actually is making me worse. But that is not the norm. For me!
    Plum likes this.
  4. Smith


    Thanks both for your replies!
    Best wishes
  5. Dufresne

    Dufresne almost there...

    I also sensitize to whatever I eat during a PEM episode.

    The other thing that causes me to develop new sensitivities is significant mold exposure. Dr Rea recommends mold and MCS patients follow a rotation diet to prevent new sensitivities, so this is considered a common association for those in that field. I thought I was cooked when sensitivities first became a problem 4-5 years ago, but a simple rotation diet completely manages it for me. It's inconvenient, you can be sure, but there's no choice if you have what I have. And on the bright side it naturally has you eating a large variety of foods.

    So many of the folks I've communicated with over the years who have this also have environmental illness, be it to chemicals and/or mold. Mold is the most likely and usually accompanies MCS, so if you've significant food sensitivities it's definitely worth looking into mold/environmental illness. You might discover you've something that's very treatable. It's a lot more common in ME/CFS than most realize. The problem is we're not likely to recognize it until we've removed compounding stressors, or until the symptoms become horrendous and undeniable. The good new is you can feel a whole lot better from practicing avoidance and rotation. And then there's mast cell stabilizers and that sort of approach as well.
    wonderoushope and Toxed like this.
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    Test a food by trying it and retest is my approach. If it is associated with the same symptoms consistently, I avoid it. If I am not sure, I try it again unless the symptoms were severe enough not to risk a possibly on purpose repeat.

    The only test a doc offered was a skin prick test and that was hopelessly inadequate. The other docs encourage me to keep doing whatever it is that I am doing.
    Valentijn likes this.
  7. geraldt52

    geraldt52 Senior Member

    I would second using the elimination diet. Whenever I'm having problems I revert to eating nothing but chicken and rice, my "safe" foods, then begin adding things back in. I am continually developing new problem foods.

    Another thing I've noticed is that I can eat a number of foods occasionally, without problem, but if I eat them regularly they are a problem. "Rotating" what you eat may help. Another tip a doctor once gave me is that any food that you "crave" is very likely to be a problem, whether you recognize it or not...I've found that to be true.
  8. Timaca

    Timaca Senior Member

    I definitely have food intolerances.....way too many of them. I also would suggest an elimination diet. You can read my journey on my blog here. Here's some of my food challenges. You can check out some useful books and websites on the resources page of my blog. You might find some of the books quite helpful.

    I suspect that the chronic infections that I have set off the food intolerances in me. I see my doctor on Monday and a GI doctor on Tuesday to discuss this.

    I have histamine intolerance, in addition to intolerance to some foods that are also low in histamine (wheat, rice oats and egg yolks for example).

  9. panckage

    panckage Senior Member

    Vancouver, BC
    For food intolerances this is correct although tests can detect allergies.

    As someone with multiple food intolerances (gluten, soy, (probably) all spices, cocoa, brocoli known thus far. Dairy is also an issue for a few weeks a year for some reason) its been tough. I've given up trying to eliminate foods and rather just only to eat what seems to be ok.

    Eating pure foods is really important. Soy and wheat can be found in trace amounts in almost anything. Vitamins often contain soy. Prescription medicines are the worst. Most can not say whether they contain gluten or not. And very commonly they do
  10. Toxed

    Toxed Certified in Environmental Medicine, ATSDR

    I concur with many of the comments here. GMO foods and crops desiccated with glyphosate products (like Roundup) are often the antagonist. Wheat is one of those, and there's a rising amount of research linking gluten intolerance to consuming wheat thats been treated with glyphosate. Other conventional crops that get a preharvest dose of glyphosate are grains, peas, beans and cane sugar. Use organic varieties for these.
  11. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I'd like to add to above post. beware.. Food intollerances can very tricky to work out as one may not react to something one day but may on a different day.. all depending just how susceptible one is to that thing on the day or just how much of a thing(s) one has had

    eg one may be fine with a certain amount of something one day but if one has also had another food which one has food intolerance too.. one is then more likely to get more of an reaction to other things they are intolerant to as well. Possiblity someone can be fine with both these things individually but together get an reaction. It took me years to work out my food intollerances and some can come and go (it can also tie in with how bad my MCS is at the time which seems to drop my tolerance (along with mold exposures) to how I are with foods. Also the symptoms I get to certain foods has changed eg milk used to give me a headache but now if I have too much it doesn't give me a headache but rather affects my tummy.

    Skin tests do not pick up food intollerances but only allergies.
    wonderoushope likes this.

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