Hi, Saw the interview on YouTube with Dr Perlmutter, author of Grain Brain, where he talked about his book. But, when he was talking about supplements he stressed the importance of vitamin D3, so I decided to have another go with it. I’m now on 5000IU a day. Hoorah! He stresses a high fat diet and I think that’s why I’ve had success this time as D3 is fat soluble. I feel I’m finally able to have a real go at tackling MS. Heather
Please do make sure you go for a blood test and monitor this, overdoxing on D3 is not good either.
I take 1,000 - 2,000 units a day as that’s what my neuro recommended but I know some people take 20,000 units a day… if you’re taking 5,000 then get your levels checked 
Even the tablets I take are labelled as “optimum dose” and they’re 1,000 units each.
Sonia x
l have been taking 10,000ius daily during summer and 20.000ius in winter - for about 6yrs now. And l have my levels checked every 6months at CityAssays lab. [GP’s blood test combine d2/d3] My level is now at the highest l have ever got it 98nmols.
l do not eat grain - but l eat a high fat/protein diet - lots of dark green veg/salad.
Gluten prevents the body absorbing Vit d3. Which is something l learnt last week on the Gluten Summit.
Dr Holicks presentation is worth looking at on youtube - he makes it all so much easier to understand.
Heather,
l shall be interested to see Dr Perlmutter’s presentation.
Heather,
What shocked me about the damage gluten does is the brain lesions - and how it actually kills off brain cells. l have ordered the book Grain Brain. l have been trying to keep to the Barry Groves eating style of hunter /gatherer - high fat -low carbs. Went out for a meal, with friends, last night. And l had cornish crab/prawns/avocado - then a Goan curry with Sea Bass prawns/rice. No need to eat bread. Then a pannacotta for pud. So its easy to keep off gluten. l think eating bread becomes a habit. Lots of people eat cereal/toast for breakfast - then a sandwich lunch time - and then more gluten at dinner - pie/pasta/pizza etc. When they could have a gluten free option. l find eating carbs just drains my energy.
Hi, Dr Perlmutter suggests starting at 5000IU D3 per day then getting your bloods checked ofter a couple of months and adjusting the dose if necessary. Last time I saw my MS Nurse, she said they were now recommending at least 1000IU per day for MS. I’d previously been worried about overdosing but I’m happy that what i’m doing is OK. I’m a big fan of Barry Groves, Terry Wahls, Dr Mercola and Dr Perlmutter. I learned such a lot on The Gluten Summit about how bad gluten is for humans in general. I just wish other people would follow suit rather than being driven by their taste buds. My relatives just humour me. They think all this research into food is just something to pass the time while I wait for the inevitable. The thought that the modern diet, in particular gluten, might have actually caused my MS isn’t taken seriously by them. Everyone eats it, so it must be OK, right? Heather
Hi
I put myself on D3 1000 units and a multi vit 3 years ago. The last (and only) test showed 116 which I assume is ok because nobody talks…
This gave me 2 years without a cold but just had one and wonder if it is because I left off the multivit during the summer months. I found it hard to eat or breath with this cold - should I see the gp?
My balance has improved but I am much better in other areas - fatigue, coordination, memory and concentration
It is interesting reading others view and experiences on D3 - so thanks for the question.
Cheers
Moira
Heather,
My interest in d3 - started about 7yrs ago. A dear friend of ours was diagnosed with ‘inoperable cancer’. His wife was determined that he got a second opinion - so she contacted a oncologist in US - who agreed to see him. And before leaving for US - he started taking 60.000ius of D3 daily - at the oncologists advice. The oncologist said it would give him a better chance of surviving the ‘op’. Well it was successful - and he has now the all clear. AND he still takes the high dose Vit d3. He advises everyone to take a d3 supplement. l then started reading up on it - and of course lots of info on this forum. Dr Holick/Jelinek etc.
Apart from all the auto-immune diseases that are connected to a D3 deficiency - also 13 types of cancer. For some reason, we with MS are usually D3 and B12 deficient - caused through malabsorption.
20,000ius is the equivalent of 15mins in bright sunshine - so that gives you an idea of the amounts we need.
Moira,
The recommended level for d3 is 150/225. - So l am pleased that you have found a benefit by just taking 1000ius. Now winter is upon us - why not try taking more. You have a good guide by what your level is now. Perhaps you will get more benefits. Sorry to hear you are full of cold right now. Drink plenty of fluids. The last time l had a really nasty cold - and l always get a nasty hacking cough - l took some capsules called Beechams All-in-one. They worked well - cleared up my head and chest. ln fact l must buy some more - just to keep in case!
When I was hospitalised with my initial symptoms I had all the usual blood tests before eventually being diagnosed with CIS. However I asked my GP what my vitamin D levels were like when I was discharged to find out if I need to take a supplement and she said they were normal (93 I think) so I should not take one. However everything I read suggests that I should. The Sainsburys vit D supplements are 400 iu, are they vit D3 and should I listen to my GP or all the other advice?
Just a note on the wonders (or not) of D3. I was taking a very high supplement for years - 10,000iU a day. During my time on this, the effects of my MS became much more pronouced. I went from being able to walk unaided to needing a stick to walk quite short distances and my bladder control got much worse. For some reason I got tested for the levels of Vitamin D in my blood. I think those levels were about 430 nmols/L (I think - it could have been 330 - anyway miles past the recommended level). As it says earlier on this thread, the recommended level is about 100 to 150 nmols/L. I was very scared that my levels were so high and wondered if some of my MS symptoms were coming from that. But when I contacted my neuro, he said that dangerous levels were up past 700 nmols/L and that at least one study had tried to get people with MS up to 300 or 400 nmols/L.
I still take Vitamin D, but much less. I’m in a worse state than I was. My point is that you can get your Vitamin D levels way up and it may make no difference to your disease. I’d advise people to get a blood test done by your GP and try and get your levels around what is recommended but don’t count on it being a miracle cure.
I wasn’t eating gluten for quite a large chunk of the time when I was going downhill very fast as well, so I wouldn’t say giving that up is a miracle cure either. And I’ve had really bad experiences with the Wahls diet but this is getting to be such a miserable post that I think I’m going to stop here.
Heather, l have just started reading the book you recommended The Grain Brain by Dr Perlmutter. And l can’t put it down - especially after all l learnt from the Gluten Summit. There are several references to MS/Parkinsons - as there are in Barry Groves books. As you know l have tried to keep to a No Grain - High Fat/Protein /low carb diet and l certainly feel more energised and my tummy problems behaving. Reading this book - l now am more aware of ‘hidden gluten’. Cutting out sugar/carbs is something l will have to learn - well re-educate myself - without going on l’m a Celebrity Get me out. They survive - and look good on it - on rice/beans and ‘animal parts’.
Many thanks for this.
I was diagnosed around 4 monthsago, and my consultant highly advised on taking D3, he also said I should look at changing to a “healthy Mediterranean type of diet”.
At the moment I’m taking 5000iu of D3 daily, and considering going back on Magnesium along side the D3.
I will be looking speaking to my GP shortly in regards to monitoring my D3 levels.
As for the"healthy" diet, well that means having a lot of will power and changing my eating/drinking habits totally.
One thing at a time eh !
Hiya
Well the vitamin is back in the news today. Yahoo news, The Daily Mirror. Even saying someone called Dr Anne Gocke is running a trial of the vitamin D on MS people. I’m sure she has done this before, though, years ago.
2 days to go for my review blood test after 6 months.
Marty
Recently found out that I have a very low level of vitamin D (43). I am now taking double dose of D3 to get my lev up & I must say starting to fe. better already. I wonder how long my D3 has been this low? I was diagnosed with RRMS in 1997. Anybody else feeling the benefits of taking D3?