Forum

Diet and Food Supplements

Hi all,

I’m newly diagnosed and people keep suggesting veganism to me. I’m already vegetarian (including no fish, but I eat dairy), but I guess it may be time to re-think my diet further. Google spits out plenty on the topic with exactly one doctor confirming the plan’s usefulness and only positive feedback on it - for me, that’s not the most encouraging proof, but the idea that diet may be an important factor and can help reduce symptoms seems logical to me and at least worth a try…

Does anyone have any experience with dietary plans that have been helpful? Also, are there any food supplements that may help?

Thank you for any feedback,

Mareike

Hey Mareike,

Sorry to hear about your recent diagnosis. However, It’s not so bad. I was diagnosed about 3 and a half weeks ago now and like you I hit google straightaway! I changed everything about my diet straight away however found cutting EVERYTHING out exhausting. I’ve found that cutting dairy out works for me. I also don’t eat alot of Gluten. These changes too the form of getting almond milk and healthier bread. I make sure I eat plenty of Greens and protein too. (check out the Wahls diet! I quite like it)

Re the supplements, I’ve started to take sea kelp, cod liver oil and vitamin b12!

Really looking forward to what others say about this.

Hope you’re well

Peter

Hey Mareike,

Sorry to hear about your recent diagnosis. However, It’s not so bad. I was diagnosed about 3 and a half weeks ago now and like you I hit google straightaway! I changed everything about my diet straight away however found cutting EVERYTHING out exhausting. I’ve found that cutting dairy out works for me. I also don’t eat alot of Gluten. These changes too the form of getting almond milk and healthier bread. I make sure I eat plenty of Greens and protein too. (check out the Wahls diet! I quite like it)

Re the supplements, I’ve started to take sea kelp, cod liver oil and vitamin b12!

Really looking forward to what others say about this.

Hope you’re well

Peter

Hi, Yes, me again. I’ve been on the Best Bet Diet since 2008 (ie. no dairy, gluten or legumes) but I’ve cut out other things along the way, eg. Potatoes and meat. I’ve read so much about all the pesticides, hormones and antibiotics that ends up in our food, so I’m now just about vegan. I eat mainly fruit and veg, with nuts and seeds and occasionally fish (that’s the non vegan bit), some dried fruit and cacao. I’ll never have meat, dairy or eggs again. Diet is a personal thing, what works for one won’t work for another. We’re all different. I’m aiming to flood my body with nutrients so that it can start to heal itself, and I’m comfortable with what I’m doing. I’ve done a lot of research. Others may disagree, but an almost raw, fruit and veg based diet seems to be what’s mostly recommended for most modern illnesses. I even read one article that said MS was due to a vitamin deficiency. There’s lots of opinions out there. What constitutes a healthy diet is also debated. It’s amazing how much we’re all swayed by advertising. Heather

Please be very careful.

Although you will find many adherents, there is no scientifically robust evidence that ANY of the diets work. A healthy, balanced diet is sensible for anyone, whether they have MS or not, but beyond that is controversial.

One of the problems is that MS, is, by nature, a highly unpredictable disease. So if somebody “does well”, or appears to improve, is that because of something they did (Diet? Lifestyle?), or would it have happened anyway? Equally, if someone fails to do well, was that because of poor choices, or was it always out of their hands?

If there were any concrete evidence diet affected the prognosis, you’d be advised of this at diagnosis. You’re not, so enough said. That doesn’t mean you can’t experiment with diet if you want, just as with any complementary or alternative therapy. There will always be those who claim to have felt benefits. But always remember your body is fighting an illness. Consider whether you want to respond to this by restricting the variety of nutrition available to it.

Tina

I agree with Tina. There is a real risk of thinking that if a diet is really restrictive and difficult to stick to and time-consuming and awkward to fit into social eating and an overall copper-bottomed, four star pain in the nethers, then SURELY that will fix MS… That sort of notion can be seductive when a person is going through the tough stuff of being recently dx, even if that person knows in his or her heart that it is nonsense. Sometimes the urge to just DO something about this horrible dx is overwhelming. Obviously I am not saying this is you! - I do not know you at all and it would be none of my business anyway - but the point is that all newly dx people are a bit vulnerable to hoping they can fix the unfixable. Wishful thinking can creep in, and there is nothing wrong with that - except if it leaves you at risk of ending up malnourished just when your body most needs looking after. For sure, some people find with personal experience that eating or not eating particular things seem to help them to manage their MS symptoms. But that is a different matter, I think. Good luck with your choices. Alison

I agree with Tina,

I feel that MS takes enough away from me already without severely restricting my diet. I try to eat healthily the majority of the time but when my fatigue is at its worst I will resort to ready meals or even takeaways as a treat or on a really bad day. The ready meals I buy are the better quality ones and I always have fresh or frozen green vegetables with them so I am still getting some nutrients.

I also eat chocolate and drink alcohol occasionally. Life can be bad enough so why deny myself the odd treat. Having said all of the above, I have been remarkably well for the past 3.5 years compared to how I was when I was first diagnosed. If diet made such a difference I doubt I would be able to make that claim.

Tracey x

Thanks so much for all your input. My head is spinning right now with all the new information and I have important and stressful exams coming up tomorrow as well, so I’m physically and mentally in pretty bad shape to make decisions. I guess diet will be a bit of a trial and error thing anyway, which I’ll just have to figure out along with all of this. But it really helps to hear other people’s different views and experiences on this!

Mareike x

Greetings Mareike,

Everybody has a different view on diet, and this board is generally unexcited by possible dietary enhancements to our health.

I think it’s worth seeing a dietician if you are considering any changes to your diet, but I like a diet which is gluten free, low in fat and low in sugar. I have little red meat but enjoy fish and occasionally chicken. I have eaten this way for about twenty years so I’m very used to it and I prefer it. It can take more time in preparation but what’s wrong with that?

I also take vitamins b12 and d3 and oil of evening primrose.

Mark

Hi Mareike I would just echo the others…your body needs different food groups to perform and aid different functions, unless of course there is a medical reason, ie an allergy, to exclude. I, like you, in the early days of diagnosis, tried various things, all with my MS nurse and neuro saying don’t bother and be careful but I still went ahead. Honestly ? Nothing made me feel any better and in actual fact some of the stricter plans made me feel awful. Eat clean and healthy, little and often, remember each food group and don’t deprive your taste buds or body !! Catherine xx

I’m with Tina and Tracey on this, I’m afraid. I was diagnosed in 1999 and my MS progressed pretty slowly for the first eight years. I went on the Best Bet diet when about two years after diagnosis. I was convinced that things were not getting worse very fast because of the diet. But then I did start going downhill much faster (about 2007). I stuck with the Best Bet diet for another three years, I think. After that, I started to think that my life was hard enough, without having to worry about what I was eating all the time. I didn’t see any big change in my health when I starting eating gluten, saturated fat, pulses and so on again.

As I’ve said on here before, if you’ve got the time and energy to follow a restricted diet and make sure you’re still well nourished, it probably won’t do you any harm. However, you will probably never know whether it’s doing you any good.

Hi Mareike

Sorry about the dx and welcome to the MS club

On dx I read the George Jelinek book entitled ’ taking control of MS’. He is an Aussie doctor who was dx with MS himslelf. His stratergies for helping MS include (a very low fat diet), he belives that fat has a significant part to play with MS. He also advocates Vitamin D3 (something that has become significant to us all; as people with MS do not absorb vitamin D3, sunshine). He also believes that meditation is important too. I tried his diet for a year and still had a relapse but have been advised that you need to stay on it much longer to receive any real benefit, I have decided it is much too restrictive to stay on permanently, for me anyway. I do dip into his book now and again, as I find it inspirational and informative.

I was a fairly strict vegetarian too before dx. ( I wasn’t low in B12 though), I still eat mainly vegie food but also eat fish and a little chicken. I have cut down on my intake of dairly produce though and eat very little cheese, (something I love).

I’ve also realised that many seeds have a good source of nutrients and apart from helping with constipation linseeds have Omega 3 fatty acids as well as viamins and apparently can also help with the menopause.

As for supplements; as others have stated B12 is good and it might be worth asking your doctor for a test for vitamin D3.

Good luck, Wendy x

Sorry, forgot to mention supplements. I take 5,000 IU Vitamin D3 daily as advised by my neuro and I have a B12 injection every 12 weeks as, during the course of diagnosis, it was discovered that my B12 level was low. As my mum had pernicious anaemia the neuro decided I needed the B12 injections too.

Tracey x

Hi Mareike, I agree with the above posts about cutting out whole food groups - have to be careful. When I was first diagnosed I was angry that I had still got this disease despite looking after my health for years. I thought what was the point if you still get ill? I decided to turn that around and think - well maybe I would have had symptoms earlier if I had not been exercising and eating healthily. Hopefully our bodies will cope better with MS attacks if have been eating a variety of really nutritious foods. My feeling is low fat, low salt, lots and lots of fruit and veg, whole grain bread/rice etc. We also eat fish and home grown meat and cook from scratch, but know this may not be possible forever. At the moment I have decided against following a really strict ‘MS’ diet as many people have said it makes no difference. I think having a normal BMI is a good idea - just from a moving around point of view, MS, and all the cancers/diabetes/heart disease linked to being overweight. I would be very interested to hear further what vitamins others take - since I think some of these can be very good, but also sometimes with unforeseen consequences too.

Hi Bea, Well I take 5,000iu of vitamin d3 twice a week, I have vitamin b12 injections monthly, I take 2 flaxseed oil capsules a day, 1 evening primrose capsule a day, 1 multi vitamin tablet a day, 1 magnesium tablet a day, 1 zinc tablet a day, 2 ginkgo biloba tablets a day, 1 vitamin b complex tablet a day, 1 vitamin e capsule a day and also 1 folic acid tablet a day. Most of them were recommended to me by consultants / gp’s

Blimey, Karina 1980, you must have good consulants/gps, I once tried to speak to a Neuro about food and vitamins and was completely ignored. I think they do get it now though, as my present Neuro advised a newly dx friend on taking vitamin D.

Wendy x

I was advised by neuro to take Vit D3 too (5,000 IU daily). He also said do not consume high quantities of calcium containing foods (milk, cheese, yoghurt etc) as can cause kidney damage and weak bones - if combined with Vit D 3. He also recommended omega 3 supplement, but like Karina I am thinking of switching to flaxseed oil instead of the fish source of omega 3 since I heard this can have dramatic effect on relapse rate. Need to locate & read the research paper first! I skip the D3 if been out on a sunny day, and fish oil if eating fish that day.

Hi As advised by my MS nurse and neuro, I take, vit d3, vit b12, omega 3, calcium and magnesium combo and zinc. Catherine Xx

This is paper I saw recently - it’s not a randomised controlled trial in any way, but fair numbers studied. Int J Neurosci. 2013 Jun 3. [Epub ahead of print] Association of fish consumption and omega 3 supplementation with quality of life, disability and disease activity in an international cohort of people with multiple sclerosis. “Of 2469 respondents, 1493 (60.5%) had relapsing-remitting MS. Those consuming fish more frequently and those taking omega 3 supplements had significantly better quality of life, in all domains, and less disability. For fish consumption, there was a clear dose-response relationship for these associations. There were also trends towards lower relapse rates and reduced disease activity; flaxseed oil supplementation was associated with over 60% lower relapse rate over the previous 12 months. Further dietary studies and randomised controlled trials of omega 3 supplementation for people with MS are required, preferably using flaxseed oil.”

Mmmm and would you belive I am a fishmonger’s daughter!!!