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Changing Dietary Sensitivities With Fibromyalgia & Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by Glynis Steele, Jan 26, 2012.

  1. Glynis Steele

    Glynis Steele Senior Member

    Newcastle upon Tyne UK
    This article allows comments.

    This is the third out of 4 Januaries that I've been trying to figure out what food is bothering me this time. Three years ago, it was gluten. Last year, it was dairy and soy, with more to follow by the time my problem gall bladder was diagnosed and removed. Now, I'm once again having a problem with dairy or soy, or possibly both. This time, I suspect I've developed some new food sensitivities. Those are among the many joys of fibromyalgia and chronic fatigue syndrome.

    This is one of the areas of our illness that we don't know a lot about, other than that it's really common for us to have food sensitivities. I think the most convincing theory I've seen comes from Ginevra Liptan, MD, and is outlined in her book Figuring Out Fibromyalgia. Here's her theory in a nutshell:

    Our autonomic nervous system has 2 modes - sympathetic, which is known as fight-or-flight; and parasympathetic, which is known as rest-and-digest.
    In us, it's stuck in fight-or-flight, meaning blood is diverted away from the digestive system.
    That causes the spaces between cells to widen, which allows tiny food particles to slip between them and escape into the blood stream, which leads to sensitivities.
    Doctors can test for food sensitivities, but there's disagreement between mainstream and holistic medicine as to which tests are most accurate. You can check for food sensitivities on your own as well:

    Find Food Sensitivities With the Elimination Diet
    I first did the elimination diet a few months after my fibromyalgia diagnosis. It's a huge pain, but it doesn't last long and is worth doing, since food sensitivities can cause horrible digestive symptoms and exacerbate your other symptoms as well. It involves cutting back to very few foods and then reintroducing one category at a time. I was frustrated the first time because I didn't find anything, but at least I knew it wasn't a food problem.

    Later, when the gluten issue was becoming apparent, I had a pretty good indication it was gluten and tried eliminating just that. It helped within just a few days, and when I tried to re-introduce gluten, I was back to square one. (Then I needed to be tested for Celiac disease, which is an autoimmune condition, and fortunately I don't have it.)

    Both with my gluten problem and last year with my bad gall bladder, I waited to long to go to the doctor. Because of that, I suffered longer than I needed to and let the problem impact my life too much. This time, I'm going in sooner. If it is food sensitivities, I need to find out quickly so I can get rid of the symptoms that are disrupting my life - I don't need more fatigue, sleep problems, muscle pain and puffiness, thank you very much! If it's not, at least we'll have eliminated that so we can look for other issues.

    And that reminds me - don't let your doctor blow off digestive problems as "just" fibromyalgia or chronic fatigue syndrome. Yes, we're prone to food sensitivities and also to irritable bowel syndrome, but those are problems that need to be diagnosed and treated separately. Additionally, our existing illnesses don't prevent us from developing other problems, like my gall bladder infection or other serious digestive problems. It's better to be safe than sorry.

    Do you have food sensitivities? What bothers you, and what symptoms does it cause? Did you find sensitivities through testing or the elimination diet? Leave your comments below!

  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Many of us with ME have MANY different food issues going on and hence why the food issues can be so hard to work out. It took me years before I became aware that I had some kind of food issues going on.

    The first I realised I had food issues was I found myself feeling unwell with artifical sweeteners so I went artifical sweetener free around that time I also realised I had issue with caffeine so cut that out. As far as alcohol goes that has been a no for me the whole time Ive had ME (ive always been sensitive to that).

    A couple of years later I realised was that when I drank milk, I got a headache (I didnt have bowel issues from milk but headache.. and later on I realised I sometimes got a sore throat after I drank milk).

    I thought it was the lactose of the milk so tried lactose free... and got a headache from it still. I then tried goats milk from the shops but with the same result (later on I discovered thou that goats milk had lactose too thou a small amount). Then I tried that new milk on the market which is from special cows which hasnt got something which causes reactions in some people (A1 milk?) but I reacted to that too. I rescued a goat and unknown to me it was pregnant so it ended up having a kid. I milked it and strangely thou it was still at a time when I was reacting badly to milk, with that goat thou and the fresh milk from it, I had no reaction and could drink. To this day i still dont know what I was reacting to with milk.

    Around time of realising the milk issues, I became aware that I also had an issue with peanuts. If I ate around a handfull.. my tummy didnt feel well. So I stopped peanuts (a few years later I also developed the issue with cashews but so far Ive been fine with all the other kinds of nuts).

    When I started drinking sports drinks for POTS, I tried a green coloured one and got very ill and at that point realised I had issues with the thing which causes some products to be green. I'd reacted previously to another thing which had a green food colouring in it too but hadnt at the time been aware of which thing in the product I'd reacted too.

    Ive always been unsure with gluten and bread products if they give me symptoms or not (I have the celiac genotype and all 4 of my fathers brothers have severe celiac disease). I "could" still not sure.. feel more tired when I have these products.

    I was going to go onto a food elimination diet but with the cut out of the things I did which I realised I certainly did have issues with (and chemical avoidance), over time the MCS and food issues improved. I can now have dairy without symptoms even milk, I can now have the very occassional coffee (thou I suspect it gave me bad POTS collapse recently after I had it). (I cant have artifical sweeteners still).

    5 mths ago I found out I had another food issue. That being with carbs. I had high insulin (hyperinsulinemia) and that causes me some major symptoms when I eat carbs but I'd missed the connection as carbs are in almost everything. (you may miss picking up this issue with food elimination diet as it could be a combination of eatting carbs in A then B and then C which ends up with enough carbs being eatten to cause an reaction). My insulin issue is also why I probably also had hypoglycemia show up on some of my past blood tests.

    One clue I had a carb issue which I'd missed is that I get weight explosion when I went on this diet in which one day one had to eat bananas (one had to eat different foods on different days of this weight loss diet). I put all the weight I lost back that I'd lost for the whole week before on the other foods and more just from a few bananas.

    Im now on a special diet for my insulin issue (far stricter then a diabetic diet in carbs). When I break my diet I find having more carbs can cause me: sore throat, morning tiredness (my carb levels are still high from a high carb dinner the night before), mood swings. Those who have insulin/carb issues can have MANY different symptoms and can be wrongly misdiagnosed as CFS. Carb/Insulin issue also gave me GERD, Im off of my prescription meds for GERD and dont get it any more since the extremely low carb diet.

    My milk issue of the past...some of that would of been from the issue I have with carbs but I know it wasnt just that, I still dont know what I was reacting to in the milk.

    Last year throu hair analyses I disovered I had a deficiency of molybdenum (I have way under normal amount, hardly none at all). Molybdenum is needed in the body to make the enzymes which break down some chemicals and alcohol so it quite possibly this deficiency was responsible for some of my reactions to things. (My brain has improved since working on fixing that deficiency). Those who have issues with alcohol and chemicals should consider the possibility of this deficiency.

    So in my own case three different things were causing my issues to foods.. food intollerances, an insulin issue and also a deficiency issue. Best luck to those trying to work their food issues out.
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    Glynnis, probably not something you want to hear, but it may be useful to others - I was having severe gall bladder problems and also had gluten intolerance. When I went off gluten completely, my gall bladder problems disappeared. When I went back on gluten, the gall bladder problems came back. I am off gluten now.

    Another sensitivity which is common, but may be hard to pin down is sulphite intolerance (sulphite is ubiquitous in processed, even some fresh products). Almost all organic bread or other flour products will have sulphite, which is often used to process the corn, prior to flour making.

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