Making a Meal of It

August 28, 2012 § 2 Comments

When I first was diagnosed with dermatomyositis, a few friends mentioned diet to me. I’ve always been quite diet aware as I was a vegetarian for 30 years – you’ll see why I say, ‘was’, soon.

The NHS are wonderful in many ways, but holistic advise isn’t really forthcoming for a lot of diseases, this being one of them. If you have coeliac and often for cancer sufferers, you will get offered the advise of a dietician, but in this case, it wasn’t seen as connected.

It seems that the connection between autoimmune disease and diet is highly contentious in fact, I think more so in the UK than in the USA, but I’ll explore this in another post.

So, in the end I paid for a private consultation with a dietician – fortunate for me that I could afford to do this, not everyone can. It cost me £40 per session and I had 2 sessions, by Sykpe, as the dietician is based in London. Isn’t Skype video a wonderful thing.

Fleur, the dietician, wanted me to eat meat to help with my muscle replacement after the effects of dermatomyositis: I just can’t. I became a vegetarian as a quiet protest against the mistreatment of animals in factory farms, not for health reasons, so I just couldn’t bring myself to change that philosophy. After much debate, I agreed to eat fish. So with that in mind, she gave me this advise:

1. Eat eggs and fish every day

2. Eat root vegetables as much as possible, for example beetroot, carrots, parsnips, etc.

3. Eat green leafy vegetables as much as possible

4. Cut out Gluten (I already have, that’s another story)

5. Cut out dairy and lactose (see later)

6. Reduce my eating of grains to a minimum (I admit I like to odd slice of gluten free bread…sorry Fleur!)

7. Eat nuts like walnuts

8. Reduce sugars like sucrose and fructose as much as possible

She also wanted me to take a supplement called Lactoferrin which is found in mothers milk and helps to boost the immune system.

I also have to take high dose vitamin D, prescribed through my doctor, as my vitamin D levels are very low, as well as the usual Natecal (calcium and vitamin D tablets you take to counter the steroid affects on your bones).

I’ve also cut out caffeine as much as possible and alcohol (Waaaaaaaaa!!!!!!)

So how did I get on, 2 months down the line…

Well as Im sure a lot of you know, making dietary changes, especially ones that involve eating healthy stuff is never easy. I did however, give it a go and continue to mostly follow Fleur’s mantra.

I do eat high cocoa solid chocolate and have the odd treat of a small Green and Blacks dark chocolate ice cream, mmmmm chocolate ice cream mmmmmm.

The only one I’m really struggling with is cutting out dairy, because every morning I have a really delicious breakfast which I can’t bear to give up. My breakfast, shown below, is gluten free muesli (well actually  a mix of two different ones) with milk (not much though!) and some organic coconut yogurt, with berries of several types on the top…mmm…mmm…mmm how can i give that up!!!

Mmmmmm Brekkie

I’m actually pretty good at controlling my diet but I have slipped a little bit with the odd slice of gluten free bread – I find it helps with the nausea caused by the methotrexate.

So has it worked?

Well it’s early days: I feel very ill still. But then maybe if I was eating lots of gluten and sugary foods, etc. I’d be a lot worse. I won’t take the risk of exacerbating this illness and so I will persevere, but with the odd fall off the wagon.

How do you do a comparison for an experiment like this? I don’t have a control group to check results against. All I can do is assume this is the best way forward and stick with it. The alternative would be to start eating badly and see what happens  – no thanks!

In the end I can say I eat pretty well, but I am finding this diet expensive. I am in a position where I can afford it, but others would struggle.

I’ll write some more posts on diet and feeding because there are considerations when you have this disease that may not be obvious to dieticians.


I found some lactose fee milk…woohoooooo, so I’m using that instead of the real stuff, it’s fine, it tastes the same.


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§ 2 Responses to Making a Meal of It

  • I’ll volunteer as your control group, I eat the worst foods, including lots of caffeine! I’ve been trying to incorporate better foods and more water lately, and I have to admit I feel a little better on those days. Good luck friend! I’m proud of your efforts!!

    • susiemorrow says:

      AHa! Your it then. I miss the caffeine, but not as much as the red wine. Im having a ‘kitchen party’ to celebrate my new kitchen and it’ll be hard not to have a little tipple (I might have to – sorry Fleur!)

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