ME and Food

This article popped up on my facebook feed this morning, written by Esther Rantzen who has a daughter with ME, who now thinks she may have Coeliac not ME as she has found a gluten free diet has made her feel better.  This is possible, but many of us with ME have food intolerances.  A relative earlier in the week told me she has had ME symptoms for a few weeks and has been diagnosed with a vitamin D deficiency and needs to take supplements for life.  This does start to beg the question of how many cases of ME are misdiagnosed leading to may years of needless suffering.  There doesn’t seem to be a standard list of things to rule out before you have a diagnosis of ME.

I have many food intolerances, I have been tested for allergies which all came back clear, but intolerances don’t show up on those tests.  When I thought back I did have Vit D prescribed for 3 months in 2013, but that was to correct low calcium.  I haven’t had my levels tested then, was just told to return if I felt tired, yeah right!!  Should there be certain things that we should have regularly tested?  I was also given at that time Iron supplements as I was slightly anaemic, but again have not been tested since and the supplement were only for a short time on the assumption that the imbalance would correct itself.  I take a multi vitamin supplement un-prescribed as I know that my diet is not that well balanced due to the intolerances.  Again it feels like because of the ME diagnosis even things that do show up abnormal do not get monitored.  My GP says it is not worth the trauma of the blood test, hmmmm I think that is a poor excuse I am not a child and have been through much worse things than a blood test!  But the tests do cost money and of course the time of the person who takes the blood etc and the NHS will cut back wherever possible.

By my own process of elimination and some very obvious reactions I have found I am intolerant to gluten/wheat not sure which, dairy (lactose), refined sugar, yeast, caffeine, alcohol, fish and Quorn.  This makes creating a meal quite difficult and eating out a nightmare.  There are many products now that cater for gluten and lactose intolerance, but they often contain other things I can’t have like the sugar or yeast.  I find lots of nice looking recipes, but again they often contain something I can’t have or unusual ingredients that I can’t buy or take too much preparation.  On top of the food intolerances I can’t prepare and cook a meal, so most of our meals are things that can either be done on advance, or quickly or that just need putting in the oven like jacket potatoes.  Meal times get pretty boring.  I store all the yummy looking recipes on my Pinterest- Gluten free page but have only tried a handful.  Last night I wanted to try sweet potato and apple hashbrowns, but as it required the potatoes and apples to be peeled and grated then soaked in advance I had to find something else instead.  As it happened my husband was late home and then had to go out again so needed to be something I could manage most of myself.

My daughter decided that she wanted fish tonight. She loves fish, but I can’t ouch it as it makes me sick!  I like fish too and do miss it.  So when they are having nice fresh fish tonight I will be having a gluten free Ham and Cheese crisp bake, still not ideal as it contains cheese and cream and it is processed food.  They do taste really nice, but have to be added to my don’t eat list as I do react to the dairy, but its less of a reaction than the fish or gluten would be.  I was told by a dietician that some cheeses are lower in lactose than others and can be tolerated.  I do find I can tolerate small amounts of cheese, but know when I have had enough.  I can’t tolerate milk or cream, but again sometimes have to put up with the reaction as there is no alternative.  At home I have soya milk and goat’s butter and lactose free cheese and cream.  I actually prefer the taste of these, I never liked, butter, cream or milk anyway.  Luckily I drink my tea without milk, but do have milk on my cereal so being away from home I have to either take my own milk which isn’t always practical or have a bit of milk, that is assuming there is a gluten free cereal, toast is out of course.  Its not a dilemma I have too often as I am not away from home much or I take my own things to self cater even when visiting relatives.

Last week I managed to make my stomach symptoms much worse by eating Gluten Free Coconut Macaroons.  They are delicious and I got a couple of packets on a special offer and felt I deserved a treat.  I only had one a day, but ended up constipated, stomach pains and with thrush due to the sugar.  Sugar also gives me bad indigestion.  I take Omeprazole daily for indigestion which if I avoid sugar is enough to keep it under control, but if I have sugar its not enough to keep it under control and I have to take other indigestion remedies on top.  So much for giving myself a treat, another thing to add to the don’t buy list.  I got some dairy free chocolate buttons, but I won’t be eating them now due to the sugar.

Bread is another difficult area.  Many places now make gluten free bread, which is like cardboard, but ok if toasted and covered in butter, but of course bread contains yeast.  If I am out I have to have the manufactured bread and hope that I don’t react too badly to the yeast, its usually ok if I only have one lot, but if I had it a few days in a row I would suffer.  I have found a good brand of gluten free, yeast free bread mixes which are quick and easy to make and taste halfway decent, but I still have to get my daughter to help to mix them!  They are called Helen’s, I buy mine online from this link, but have seen them in Asda.  There is also a pastry mix which is quite good, but I didn’t like the scone mix.  The seeded bread is the nicest one and I have added banana to it which is very tasty and good use for over ripe bananas without too much messing about.

Helen’s also does some linseed mixes which are nice on cereal or in breads, just need to check the ingredients as some contain sugar and they are packed in a non gluten free area.  I don’t really worry about cross contamination as I don’t think that I am that sensitive, but realise that some people are.  At home I sue the same toaster etc for normal bread and my own and I handle gluten products for my family.  I do find that if I handle ordinary flour I get very itchy hands.

Did anyone watch Great British Bake Off last night, I was watching with great interest the Quinoa flour pistachio cake, but apparently it tasted vile!!  Gluten free baking is a lot of trail and error, but some gluten free cakes can be delicious, especially if there is also a way of sweetening them naturally.

I made the mistake of being tempted by a Mrs Crimbles muffin and sponge bake mix as it has tasty looking bakewell tart on it and it was reduced in price, but as with most of the Mrs Crimbles products it is high in sugar, it has more sugar in it that flours!  So again I don’t think I will be making it after all, I need to check the ingredients list before I buy.  As I do much of my shopping online the information isn’t always there, or if I am in a shop I need to get out quick so don’t check properly!

As an alternative to making my own bread I do buy Gluten free wraps, but sadly these still contain a small amount of yeast, but not in the same way as other bread products. Warburtons taste delicious, but are very expensive at 87p per wrap and they are often out of stock.  Bfree make a more affordable wrap, but nowhere near as tasty, but I usually get these as they are half the price.  I occasionally buy Gluten free crumpets, but as they contain yeast and sugar I can’t have them often, they taste nothing like ordinary crumpets, but again toasted with goat butter they are ok.  Some gluten free pitta breads are also ok, but again contain yeast.  I got some gluten free naan yesterday, which doesn’t contain yeast, but not tried them yet.  All these products have sugar low down on the list, but that seems to be ok, many things have sugar in them that we just don’t realise and its almost impossible to avoid altogether I just have to be careful the total intake doesn’t mount up as it easily can without realising.  Its so difficult getting a balance as to truly know what I am eating I need to make things myself and that isn’t possible due to my ME.  Its the same with the yeast I can have some but it’s the build up or large amounts that cause problems.

I don’t think my ME is caused by an intolerance, but intolerances are a big part of the condition and can make you feel really ill, often without realising what you have eaten.  I reacted badly to Condensed Mushroom soup, which I knew contained milk, but also contains wheat.  At Christmas I was eating Pringles (crisps), and I reacted to them, I now discover they have wheat and barley in them.

Quorn is a strange one, but again make me sick.  I think its because it is made from mushroom protein and is fermented which creates yeast.  I do have to be careful not to eat too many mushrooms too as there is some link with fungi and yeast.

As well as having the intolerances I have to be careful not to over eat as this leads to my system just giving up and the food goes straight through!

If I stick rigidly to the gluten free, dairy free, fish free, yeast free, sugar free, caffeine free, alcohol free, quorn free diet I can keep the stomach symptoms at bay, but it has little noticeable effect of my other symptoms.

A new diet that is becoming popular is the Paleo diet or caveman diet which is gluten free, dairy free, refined sugar free, alcohol free and I have seen some great recipes, but again they take time and energy to prepare.

In Leeds where I live we now have a great Gluten Free Cafe 2 Oxford Place they have delicious food and can cater for dairy free too, but its still a rare treat as I have to make some compromises to eat there.

So what shall I have for my exciting lunch today?

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