Forum

Dietary approach to improving MS prospects - how much is necessary?

Shortly after diagnosis I hit google and came across the SWANK diet which I'm sure most of you are familiar with. I have an appointment to see a private consultant in early September as the public consultant who diagnosed me did not have any real lifestyle/diet advice, prescribed no medication and just advised a generally "healthy" lifestyle, which didn't leave me much to work with. I am anxious to see this private consultant to hopefully get some more detailed answers on a number of queries and concerns.

Anyway, recently I've been trying to follow the SWANK diet and keep saturated fat under 16g per day, which is difficult but doable most of the time. It seemed that there is good reason to believe his findings re saturated fat are valid.

I'm taking Vitamin D as part of a pregnancy supplement as I hope to try for a third baby soon (unless this consultant advises otherwise). I know I should be taking more than is in the pregnancy supplement but I wouldn't be able to do that in pregnancy I think (though will ask this consultant) so am just taking the RDA for the moment.

My real question about diet is this: I just got George Jelinek's book "Overcoming Multiple Sclerosis" and while he advocates the SWANK diet, he goes beyond it, recommending total avoidance of saturated fat, and indeed of meat and dairy products.

Keeping saturated fat below 16g I can do, though it's difficult given that I love meat, cheese, chorizo etc.

But avoiding all meat and dairy products, and essentially living a vegan lifestyle with fish (which I'm not all that fond of) sounds very extreme....and not something I want to do unless it's really unequivocally what needs to be done.

What are your opinions on this? Advocates of MS diets seem so gung-ho, basically making it seem as if you can halt progression / alleviate symptoms if you keep to the diet, but they seem to be implying you could well die sooner if you don't, which is frankly terrifying....

Would welcome your views!

I think it’s a matter of experimenting with diet and seeing if it makes you feel better. The Jelinek diet suits me nicely, which is just as well as I actually prefer it. Keeping a food diary is a good idea.

This blog on vitamin d3 might help to put your mind at rest.

http://multiple-sclerosis-research.blogspot.co.uk/2012/07/research-vitamin-d-is-important-in-more.html

Whammel, what concerns me is the suggestion that following a particular diet improves  your life expectancy as well as lessening your chance of long-term disability (as opposed to easing the symptoms you have right now).

I would hate to follow a vegan + fish diet, but if it genuinely would increase my life expectancy, how could I say no?

The problem is, no one can tell me 100% that it will. They can only cite studies that point in that direction. SWANK's study is all well and good, and I can follow a low saturated fat diet, but the more strict vegan one - I don't know if that's backed up by studies that show a better outcome than SWANK, and therefore if such an extreme effort really will bring additional reward....

Thanks for the link to the Vitamin D blog. The amounts they are suggesting for children are far more than what is in the baby and child specific Vitamin D supplements I'm currently giving them, but would need a doctor to advise on giving them any more surely? (and I'm not sure they would). Obviously I want to do anything I can to prevent them getting MS too, but have to protect their general health too and not over-supplement.

yeah unfortunately there are no concrete answers in the MS world.

I try to stick to healthy diet but im not always successful. Generally i'll eat a vegetarian diet with fish and chicken on occasions. I think the rewarding part for people on the diet is the knowledge that by sticking to your guns and eating healthy you will feel better mentally and physically with the knowledge that you are creating an atmosphere of health for yourself.

nothing works for everyone but at least you can say that youre doin all you can to have a positive influence on the disease.

I have followed a strict diet since my diagnosis and agree who knows if it is helping or not. BUT the chance that it might help a little bit is enough to make me want to continue. I choose my health over eating anything I like.

I also follow a diet, but in my particular case, I don't eat a diet without saturated fats. I can't eat the Swank type of diet as I have a high risk of diabetes. I did try the vegan-with-fish diet for a while, but it has risks to do with the lack of B12. 

I read Roger McDougall's article about eating a gluten/dairy/pulse free diet and gave it a try and it worked very well. I'm still eating that way, but added a moderate amount of dairy to my diet.  

I was in a great deal of pain, neuropathic (nerve pain) and constant indigestion and fatigue. I went on a fairly radical raw food diet for a few months, but found that I couldn't keep going with it as it was such hard work. I spent hours preparing foods and didn't enjoy it.  

I started a Paleolithic diet after that and this is what worked for me.I felt great after a few weeks without gluten or pulses.  Swank is a low-fat high carbohydrate diet and the Jelinek diet is similar. However - everyone is different.  The Paleo diet worked for me, but the diet issue is really tricky. We are all different and the diet issue is very difficult. All you can do is to try one diet and see how you feel. 

There isn't a one-diet-fits-all approach to MS - or even for weight loss. To be honest, I'd do even better on a ketogenic diet, but that's quite difficult to do as well. Children with epilepsy are advised to try this diet and it works wonders, but is basically a diet that is very high in saturated fats, which is a bit restrictive after a while. 

I eat steak, pork, chicken, fish, eggs and a lot of greens - a lot, spinach, kale, salad, broccoli, cabbage and I make sauerkraut at home. 'Live' sauerkraut is very good for the digestion and kills candida overgrowth.  I eat an avocado for breakfast and nothing after 4 in the afternoon. This works for me. It may not work for you. 

I tried an experiment a few years ago and ate bread for five days. I couldn't walk for three days after, as my nerve pain was so severe. My feet hurt too much to walk more than a few steps. The last time I ate bread was in March and I spent a whole night in severe pain. I  learned my lesson there. Bread is not a treat for me anymore. 

 

I have SPMS so am not in the same situation as you. I’ve been following the Jelinek approach for a couple of years now…luckily I like fish. Has it benefitted me? Don’t really know but it has certainly done no harm and, apart from MS im very healthy! When I first had MS symptoms many years ago, there was no internet so I had very little information. I like to think that if I’d found out about Swank earlier I would’ve followed that diet and maybe I wouldn’t be where I am now with MS but there’s absolutely no way I can know this for sure. (I’m 57 and can still walk but with great difficulty).

People on the OMS website seem quite convinced that the Jelinek way is beneficial (as you say - even less sat sat fat) and including meditation and exercise.

You might also want to look at the MS Resource Centre website which has a ‘Best Bet’ diet ( but too many supplements I think) for more input.

As for dying earlier if you don’t follow these diets, I’m pretty sure that I can say unequivocally that this is NOT going to happen.

Hope this helps a little.

All the best, Katen

Not sure anyone can answer your question regarding diet, as the evidence probably does not exist. Personally, I don’t regard Jelinek as being extreme in the slightest and find eating healthy food to be a very easy process to follow. Of course, we are all different and no doubt you will find a diet that suits you best.

There have been a few claims that resveratrol has anti-aging properties, if that’s a concern.

The blog is written by Professor Giovannoni and he is a MS specialist at the Royal London Hospital.

i tried the best bet diet but it had a bad effect on me.

i ended up eating hardly anything at all. gluten free bread is totally unpalatable to me but i have really cut down on bread - generally 1 slice per day.

as for giving up dairy, i can't stand rice milk or soya milk so i just have skimmed dairy milk.

i did start juicing which was good. 

i take quite a lot of supplements - i get the am and pm vit/minerals from the essential health clinic, omega 3 and vit d.

i also take neurozan (from boots) which is a multi vit and mineral for brain performance and memory.

the disappointing thing is that i used to love oily fish but nowadays just the look of it makes me gag.

i worry that i may be taking too many supplements but when i drop one i feel worse.

 

i think that if you can manage one of these diets then there's nothing to lose.

 

good luck

 

carole x

 

There is a very personal trade-off to be done here, I think,  weighing up potential benefits of MS diets against factors like self-denial and the sheer embuggeration of servicing a demanding diet while keeping family and friends fed and happy with normal food.  

I do not have any specific food intolerances, I love my food, and cooking and eating in company is one of life's pleasures, so I have a pretty much zero-tolerance approach to anything that interferes with that.   This is one area where most of us actually do have some choice on how far we are going to let MS encroach on our lives - and I'm not giving an inch! 

I'm with your first consultant on this one - eat well, but don't obsess.

Alison

x

 

You can cook loads of amazing dishes without gluten/dairy/sugar, I love cooking and it's not affected me in that respect at all. I make loads of roast dinners, malaysian and thai food is great too etc. There are ways around every problem, its about being creative and having an open mind. I cook loads of meals for friends and family that we all enjoy together, there are so many great ingredients available even just in the supermarkets now there is no need to eat plain or boring food that make you unhappy.

I think the key thing is to not try to replace things, so don't try to replace bread, gluten free bread is horrible! just don't eat things that need bread or milk etc.

With gluten you can't really just eat less, it takes weeks for it to stop damaging your system, its an all or nothing kind of thing.

As regards to Jelinek's diet, do be aware that Jelinek recommends that DMDs be used in conjunction with his diet and that he himself has been on Copaxone since diagnoisis so it is really impossible to draw any conclusions from his diet alone. Could be (read *probably is*!) that Copaxone is doing all the good work, guys!

I'm with Alison on this one. MS has taken so much away from me it is not taking away one of my few remaining pleasures. Food is a delight and good food eaten with pleasure and not treated as a medicinal supplement brings great joy to life. All things in moderation, plenty of fresh ingredients and steer clear of processed foods.... Unless you genuinely have a food allergy or intolerance there is not much proven benefit to fad diets in treating MS.

Bon appetit,

Belinda

More on Jelinek....

From his website re meds:



Medication

  • In consultation with your doctor, if a wait and see approach is not appropriate, take one of the disease-modifying drugs (many may not need a drug, and drug selection should be carefully weighed against side effects)
  • Steroids for any acute relapse that is distressing
  • One of the more potent drugs if the disease is rapidly progressive

http://www.overcomingmultiplesclerosis.org/Recovery-Program/Program-Overview/

He definitely doesn't recommend a diet only approach.

Belinda

Thanks everyone for your reply.

 

I haven't managed to read the Jelinek book yet (it only arrived yesterday and I work and have 2 young kids!) but am curious about your references to a gluten / pulse free diet.

The SWANK diet appeared to mostly focus on dramatically minimising saturated fat, so I've been trying to keep it below 16g per day and that is quite doable most of the time, although I do miss being able to have treats without having to tot up how many grams of saturated fat I've had and whether I can spare any for a treat.

In keeping to under 16g though, I'm not having to restrict myself much on the likes of bread, potatoes, pasta and rice, and to be honest if I wasn't able to have them I would be starving. I already find that cutting down so much on cheese and dairy is leaving me quite hungry, though that could be some psychological sense of being deprived that's just telling my brain that I'm hungry even if I'm not.

I am hoping it's not necessary to give up all dairy - I am having skim milk and a bit of cheese where I can spare the saturated fat in my daily allowance.

Who is suggesting the gluten free / pulse free diet?

I suppose I'm at a very early stage as I have just been diagnosed, and my symptoms to date (touch wood) have been mild so I am not yet on medication, so I am trying to find out what I need to do to stay as well as I can for as long as I can....but going back to my original post, I need to do what is right and necessary but because I absolutely love food and cheese and meat are unfortunately my favourites, I don't want to cut down MORE than is necessary. The 16g I can stick to as I can budget for occasional treats, but a diet free of all meat / all dairy / gluten....if it's not proven to be absolutely the best thing then I'd rather not!

But on the other hand, while I really love food, I have 2 little girls and I need to protect my health to do the best for them, so if it genuinely is the case that I need to give up the foods I love, I need to do it.....since there are no absolutes, it's hard to know what to do!

In a nutshell, Vincere, no diet has to date been proven to be beneficial in reducing relapse rate, progression or lesion burden.

Belinda

With Belinda on this, Vincere.

It's not "necessary" to give up any foods at all in the wake of an MS diagnosis.  I'll be surprised if you can find any reputable neurologist in the country who tells you it is, or even that it's "recommended".

Some people embark on diets in the belief - or perhaps I should say hope - they may help, but there's no overwhelming scientific case, and certainly none that is accepted by the medical establishment.

If it was urgent you modified your diet, you would have been told straight away.

Diet is just one of a range of alternative therapies some people claim are beneficial.  Basically, if you find one you like, and feel it works for you, without too much of a downside, then by all means go ahead.  But none of them are "necessary", just voluntary.

In fact, one of the very few things I like - or at least don't dislike - about MS is that it doesn't come with a list of banned things, like some illnesses.  As a general rule, if you still CAN do something (i.e. physical limitations don't rule it out) and you still want to, then there's no medical prohibition.  That's whether it's skydiving (No thanks!), eating meat or dairy, enjoying a drink, or whatever.

Tina

 

Not sure if it's entirely relevant, but you mentioned giving up dairy so I thought you might want to know that I gave up dairy for almost exactly a year because of gastro problems (October 2010-2011). It made not a jot of difference to my MS. Neither has there been any difference to my MS since I went back on it. But I'm much happier now I can eat chocolate again :-)

Karen x

 

Hi - agree with Karen chocolate is good if not essential and if you get it with fruit in it can count towards one of your five a day.
Seriously I am not on any diet for ms. However I am a great believer in what works for you whether there be scientific evidence or not.
However if you go on a very restrictive diet be sure to check out what nutrients you might be missing.
CALCIUM very important for bones and teeth. We get majority from dairy. So if you cut dairy out be sure to replace with something else. Perhaps calcium supplements - but there’s been recent bad press about them so talk to your GP
Hugs
Min xxx
Always good to get some light relief. My latest is googling flash mob events. Where hundreds of people will start singing or dancing in a public place to the amazement of onlookers - funny funny

Amylou, take a look at the Sainsbury gluten free loaf. Not the common garden type or the genius one, but own brand soft gluten free loaf. I have just come home from Sainsbury and I have one and also see there are some Warburton gluten free rolls. I think all these are really good. Normally I bake a loaf once a week but it goes off so quickly and is only really good for a day or two.

Mark