Clean Living

I’ve had M.E. since 1994 and knew instinctively that I should aim to eat as nutritionally and cleanly as possible to give my immune system a chance for recovery.  I’ve also been pesco-vegetarian for 25 years now. I don’t claim to possess much nutritional knowledge, but as a non-meat eater I knew the basics of how to eat to ensure enough protein, B vitamins and iron in my diet to keep me healthy.  It’s worked – I have yearly blood tests and have never, ever been iron or B12 deficient.  I think that’s why going low histamine hasn’t been as much of a shock to me as it seems to be to many other people – I was already conscious of my diet and its effects on my health ( although that’s not to say it’s been easy, or enjoyable!).

It helps that I live in the middle of nowhere.  It’s 7 miles to my nearest shop and having a pizza or takeaway delivered is out of the question (not only would it cost a fortune it would be stone cold by the time it reached me).  It’s a traditional farming community, where many women still bake their own bread, cakes and biscuits and cook from scratch most days.  This is how I was brought up, so again not relying on convenience foods from the supermarket wasn’t a huge leap and I already had a good food processor, blender, juicer and bread maker.

I try to buy organically wherever possible.  I can’t remember the last time I drank the chemical soup people call ‘Coca Cola’ (or anything remotely similar).  I haven’t touched alcohol in 20 years.  I drink de-caff or herbal teas (I’ve never liked coffee).  The bottled water I drink is made locally so I know it’s come straight off the mountains. I’ve never been a huge sugar eater and only ever really had dessert if I went out to eat or for special occasions.  My biggest vice was chocolate and I’d be lying through my teeth if I said I didn’t miss it, especially around my period – I find that a nice mug of warm milk does the trick though, and the odd ‘Malted Milk’ biscuit (I’ve never claimed to be perfect 😉 ).

I think juicing is important, especially for those who have GI issues (mine are from my Ehlers-Danlos and are par for the course for those of us with connective tissues diseases).  I also eat most of my side vegetables raw as you gain the most nutrition that way (especially if they are organic and pesticide free).  I’ve never deep-fried anything, and any roasting or shallow frying I do uses extra virgin olive oil (that’s the only oil I ever use really).

Photo of juicing ingredients     Photo of freshly squeezed juice

The hardest part for me about going low histamine is that the diet cuts out some seriously healthy foods.  I used to eat organic, live, plain yogurt daily for its probiotic cultures.  I used to eat loads of fruit daily, and am now very limited in my fruit choices (I’m getting well fed up of melon and mango, especially as I’ve found I react to apples and kiwi because of my Birch pollen allergy).  I used to eat much more fish – a great source of protein, B12 and Omega 3 oils.  I used to eat hard cheese like organic mild Cheddar every day (I’ve never eaten very mature cheeses like Stilton, though I did used to like my vegetarian Parmesan!) which again are great protein sources, as well as high in bone building calcium (I’m at huge risk for osteoporosis having a strong family history, many years of not being able to exercise due to having M.E., plus  having Ehlers-Danlos Syndrome).  I used to eat regular bread products which were fortified with vitamins and contained yeast, an excellent source of B12.  I also ate nuts and seeds every day which are little power houses of nutritional goodies.

Now I know I’m going to have to stay on a low histamine diet I need to re-assess my nutritional status and make sure I’m still eating enough protein, vitamins and minerals for optimum health.  I’ve registered for free with Cron-o-meter which helps track your nutritional intake based on your weight, height, age and sex.  I’ve not been using it for long, but some of the results have surprised me:

  • I usually only get 50% of my daily intake of calcium – I thought I ate quite a lot of dairy products but will be adding another glass of milk every day to my diet which takes me well over the 100% mark.
  • I’m not getting enough iron – I’m only averaging a shocking 30-50% of the recommended intake.  I used to eat nuts and dried fruit, but obviously taking these out of the equation has affected my diet more than I’d imagined.  The ‘normal’ bread I used to eat was fortified, but my organic yeast free bread isn’t.  All these things are making a difference.   I need to find a good source of vegetarian low-histamine iron that I can eat daily (no-one can eat blackstrap molasses or kale every day of the week!) but as yet I’m struggling for ideas.
  • On the days I don’t manage to juice I only get about 50% of my recommended Vitamin C, which again amazed me.  When I juice it goes off the charts at nearly 300%!  As Vitamin C is a potent mast cell stabilizer it’s important for me to keep my intake up as high as I can.
  • On the positive side, my ratio of Omega 3:Omega 6 fatty acids is either equal, or Omega 3 far outweighs Omega 6.
  • I was worried I now wasn’t getting enough B12, but was pleased to see that most days I exceed the 100% recommended intake.
  • My protein intake also always exceeds the recommended 100%.

The site is very easy to use although it does take a week or two to personalize it.  If a food you eat isn’t listed you can add it yourself (go to Food/Add food or Food/add recipe), using the nutritional data found on packaging.  But do bear in mind you only receive a guide to your nutritional intake – don’t take it as absolute fact.

The difficult parts, for me, of having a specialist diet are:

  • Cost.  My weekly grocery shop has actually gone up by about £20 a week (which is a LOT of money when you’re on a low income).  I don’t live near a market or cheap source of fresh food (there are little farmer’s shops here, but none of their produce is organic).  Specialist ingredients are expensive, and so is shopping organically.
  • Effort.  I am often very poorly, sometimes have to cope with sprains and dislocations, and have very little energy.  I live alone and have to make all my meals myself.  Doing this from scratch every single day is impossible which is why I feel hurt by comments to my blog that I’m not being strict enough, or telling me off for using a small amount of canned and packaged foods.  I can only do what I can do.  Most of my limited energy every day is spent in the kitchen and I really do have to choose between bathing and cooking a meal – I can go so many days dirty but eventually I need a bath, and the freshly cooked meal has to be sacrificed.  I try very hard not to beat myself up over the fact that my situation food-wise isn’t perfect – I’m doing the best I can.
Photo of fridge contents

Contents of my fridge

I’m incredibly lucky to live in an area with very little pollution and wonderfully clean air.  There is very little industry here and, being an area of Outstanding National Beauty which relies on tourism to survive, environmental pollution is keenly watched.  We have beautiful soft water, which falls onto the fells (mountains) a couple of miles from my house.  I’m not saying things are perfect, as the farmers who live around me all use pesticides, but at least I’m not subject to traffic pollution or heavy industry.

I’m unable to work due to my health, therefore I’m at home most of the time.  This means I have control over my environment and don’t have to breathe in other people’s cigarette smoke, perfumes or be exposed to building pollutants.  I hardly go anywhere, so I hardly ever wear make-up (and when I do it’s mascara and a bit of lip gloss, end of story) and can’t remember the last time I painted my nails.  I don’t add bubbles (or anything else) to my bath, use Simple unperfumed soap, an organic shampoo (every 3-4 days) and nothing else really touches my skin.  Oh, with the exception of a deodorant, which I know is bad for me but when you only bathe every 3-4 days it’s an evil necessity!  What I’m trying to say is that chemically I don’t think I carry a heavy burden and I’ve lived this way for many years.

So, my diet and environment are both largely under control yet I’m stiff suffering awful symptoms and don’t feel any better this year than I did last when I was eating a very high histamine diet!  That’s because food and chemicals are only a small part of the equation.  I’m convinced it’s my Ehlers-Danlos that’s causing my mast cells to over-react.  Mast cells release dozens of mediators, of which histamine is only one.  Because I’ve discovered I have low DAO it’s important for me to control dietary histamine intake, because DAO deals with the histamine we ingest and the histamine produced during digestion, but histamine is only part of a much bigger picture.  I can’t make my connective tissue less excitable, and because my connective tissue is excitable it’s making my mast cells (which live in the connective tissue) excitable.  And nothing much is able to stop that.  Even the Low Histamine Chef, who is very food orientated, states in answer to a comment on her website:

“It’s important to understand that mast cell disorders (histamine intolerance/mast cell activation/mastocytosis) are not really all about food. Histamine content of foods, histamine released through the act of digestion, are only a very small part of how/why histamine levels, as well as those of other inflammatory agents, are released from mast cells and basophils. I found I had to compile my own list of safe foods, but more importantly, I had to understand the limited role food plays in these disorders.”

MCAD is not ‘curable’ through diet or no-one would be suffering from it or other mast cell diseases such as Mastocytosis. This is a difficult concept to come to terms with as we like to feel we are in control and the best way of exerting that control is deciding which foods should enter our bodies.  However, being realistic about the situation stops us from beating ourselves up over the fact we’re eating and living well yet are still sick.  It’s not our fault we are ill with a rare and little understood disease and it’s about time we stopped playing the blame game.

So another of my New Year’s Resolutions for 2014 is to ditch the guilt and ignore those who say my poor health is somehow down to the fact I’m eating something I shouldn’t, not eating something I should, or doing something wrong.  These people aren’t mast cell disease, EDS or M.E. specialists and have no nutritional or medical qualifications – I’m not about to spend any part of this year arguing, reasoning or justifying my life to them.  Ah, doesn’t that feel better 🙂

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10 thoughts on “Clean Living

  1. E. Milo

    Great post! Quick question- what do you eat for protein? What do you eat for breakfast? How do you handle the whole “leftover”food issue? Ok, three questions. 😉
    As soon as I started a low histamine diet, my blood sugar started tanking. I don’t eat eggs and couldn’t find anything for breakfast but oats. I rely on oats and rice too much, but shouldn’t because of autoimmune conditions and I rely on nuts and seeds for all snacking and most protein and probably shouldn’t. If my husband cooks a chicken, I could eat that for days! But not on low histamine. Your red pepper sauce was a revelation (thank you!), but I’m now probably cutting out nightshades to see if that helps. My doc is adamant that I continue to avoid dairy. And I have osteoporosis at the age of 40, so I’m scared.

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    1. bertieandme Post author

      I know, it’s soooo difficult. Thankfully I don’t have half the food issues that many people do – I feel so much for you all that have to cut lots of foods out 😦

      Breakfast: either 2 slices Village bakery yeast-free organic bread, toasted, with butter & home-made rhubarb jam. Or bowl of fresh fruit (cantaloupe melon, organic grapes, mango) plus some macadamia nut halves (buy from Tesco).

      Mid morning snack: mug of hot milk (you can use Rice Dream or coconut milk if not eating dairy), plus biscuits (those listed on my shopping list page, eg Malted Milk, Ritz Crackers, McVitties Rich Tea – or you could make your own ginger snaps or oat biscuits if you’re able) or a home-made blueberry muffin.

      Protein: dairy (my main source), salmon (twice a week), Quorn (another main source), eggs, beans and lentils (I really like hummus), currently macadamia nuts (I’m still trying to work out which seeds are allowed, there is so much conflicting advice!).

      As for leftovers: it’s so hard. I simply am too unwell to cook every single day. So I usually cook enough for 2 people, put one meal in the fridge to re-heat the next day, and eat the other meal fresh. As I don’t eat meat I don’t think histamine is quite so rampant in leftover veg than it would be in, say, chicken. But maybe I’m just fooling myself 😉 I don’t beat myself up over the re-heated food issue – I just do the best I can in the circumstances.

      The blood sugar thing is hard. I don’t know how people survive who cut out dairy, sugar and grains!! I’d be in a coma – I need a LOT of calories just to maintain weight (probably due to EDS, as we expend 10 times the energy just doing normal activities than a healthy person would). I don’t worry about sugar – I just eat the stuff 😉 And cream. And allowed crisps (also need lots of salt for POTS!). And hummus (with raw veg as a dip). All to keep up calorie intake.

      Why does your doc want you to avoid dairy? Do you have stomach issues on it?

      Jak x

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      1. Racheal

        I am just coming to terms with the fact that I have to be much more strict with what I eat and drink after being laid up in bed for days your blog is very helpful Ive learnt alot, meal ideas are a nightmare I tended to eat the same thing over and over I think this is the reason for straying . I’m waiting to see an immunologist!!! Its taken a long time to get to this point just lucky the dietian I was sent to knew something about it. Reading you blog has helped me through the last couple of days laid up in better to understand and rethink how I am/ should be handing histamine thanks Rach 🙂

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        1. bertieandme Post author

          Good luck with your appointment. On the whole I have to say that Consultants in the UK, though, know *nothing* about histamine intolerance or mast cell activation syndrome. If they test for tryptase and it comes back normal you might find you come to a dead end :-/ Just don’t want you to get your hopes up! If you find your appointment less than helpful just get back to me and I’ll point you in the direction of the few Immunologists here that can help.

          Jak x

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  2. Carla

    I have just found this diet and I am horrified! I already cut out numerous foods and I am left wondering what on earth I am going to eat now??!!! Thank you very much for your blog, it contains a lot of information and it is good to listen to you and how you live your life. I could leave lots of comments on most of you posts but suffice to say I (and now my six year old daughter) share a lot of your journey, EDS, GI issues and MCS (just being tested for Mast Cell problems). x

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    1. bertieandme Post author

      Hi Carla

      Thanks for taking the time to comment, but sorry to hear you and your daughter are dealing with all these issues too 😦 The food thing is a nightmare I admit. However, I’m not one of these people who cuts out dairy, sugar, grains etc. etc. etc. because I honestly think I’d give up the will to live (life is hard enough!). I know I have a problem with histamine because of my low DAO levels, so I do low histamine – end of story. I know some people cut out grains as they’re considered “inflammatory” but without grains I’d die of starvation so it’s not a road I choose to go down. I think dairy is important for its nutritional content and doesn’t seem to cause me a problem so again I’m happy to eat dairy. I was vegetarian years before I had any health issues and it’s a moral choice not a health one, so I’m not veggie for dietary reasons.

      I’ve read a lot online about people cutting loads of different food groups out but they remain sick. So you have to question why they do it if it’s not helping. I also worry that they’re not getting enough balanced nutrition and you’re going to feel pretty sick if your iron, potassium, magnesium, protein or fat levels etc. are really low. I think if you’re going to have a very strict and limited diet you really should try and get a Dietician or Nutritionist on board who can give advice on adequate nutrition (easier said than done I know).

      I also think it’s important to try one diet at a time. Do low histamine and see if it helps. Then if you want to try dairy-free try that on top. Or if you want to try gluten-free or grain free try that on top, etc. If you cut out all food groups at once you’re not going to know which diet is helping and which isn’t.

      Saying all that you also do have to take into account your individual reactions, eg. I react to buckwheat and apples which are both low histamine!

      Then to make matters worse people with EDS have GI issues for all sorts of reasons which are non-dietary related. It’s so hard to try and figure out the symptoms which might be helped by diet and which need either drug or other interventions.

      Jak x

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      1. naturallymum

        I agree, I won’t be making any dramatic changes just yet, if at all. I am also vegetarian and we are generally a wheat free household, and it is hard enough as it is to steer away from sugars and processed foods. Trying to provide a healthy diet and do all the other things that life entails right now really is more than a full time job!!

        Best of luck with all your research, I’m right there with you 🙂

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