Eugh, after about 6 weeks of being gluten free, I tested it yesterday, I had a chicken kiev for lunch (the breadcrumbs have wheat in them) and then ordered Chinese takeaway for dinner, I had half a dozen little spring rolls and a chicken satay with fried rice, heaps of gluten. I feel fine today. Obviously the gluten free thing is not for me. I’m mostly disappointed because it didn’t work, but also glad because it’s a pest to follow.
Also, I don’t think the LDN is working - I’ve been taking it since last October, and at the end of March had a relapse which has left me either walking with 2 sticks or using a wheelchair. Up until then, I hadn’t had a relapse for a couple of years. So I’m going to stop the LDN - do you need to gradually reduce the dose, like you gradually increase it?
I’ll discuss drug options with my MS nurse, but what other diets can I try? After reading the Jelinek book, I’ve cut out red meat from my diet (I definitely know that helps), and I eat pretty healthily anyway, I like eating fruit and veg.
Hi Luisa Prior to my diagnosis and currently, I have not/do not eat red meat, about 20 yrs. I have at least 5 a day, and have always eat all types of veg, med type diet (parents) without pasta. I can honestly say it has made not difference to me. I believe in healthy eating and my kids follow this ethos, and loads of exercise, wish I old like I did Hope you be ok off the LDN. I think I am gonna try tysabri, as per neuro Mike x
Thanks Mike - I used to eat any meat, but now if I have red meat I’m exhausted for days - last weekend on a night out I had a Caesar Salad with chicken - I didn’t know until I ate some that there was also bacon in it. It took me 3 days to recover from the night out - I was home before 0100, wasn’t drinking, and was using my wheelchair, so not expending much energy (my friends pushed me - they had been drinking, that was an experience!) - it should not have taken me that long to recover.
I’m not sure about the best bet diet, I’ve also heard good things about it, but I think that if going gluten free hasn’t worked, then the best bet one is unlikely to. I did have a look on the LDN site before, but couldn’t find anything about stopping it - I’ll have another look.
I read the Jelinek book and tried the diet for over a year. I had a very bad relapse and decided it was too hard to keep to strictly. I now eat a good diet with lots of fruit and veg, some fish and chicken but mainly vegetarian food. With very little dairy. I ‘had a go’ at cutting out gluten, as I believed it could help with nerve pain that left me in tears. Anyway it didn’t make a lot of difference so have gone back to ordinary bread but don’t eat very much.
I do believe that being a vegetarian; helped to keep my MS mild early on but wish i had not cut out fish from my diet, it does seem that a low fat diet helps but don’t forget vitamin D3 and sunshine. (When we get some).
Thanks Wendy - I do eat fish (luckily I like the oily ones), and I take a vit D supplement daily (not much chance of getting it thru sunshine in NE Scotland!), I also like fruit and veg, so they feature a lot in my diet. I have never followed the Jelinek diet to the letter, but did find that cutting out the red meat helped - I try not to eat much sat fat anyway, so I think that basically my diet isn’t bad. I’m going to try cutting down on dairy next I think - not sure I can manage to cut it out completely, but I can certainly cut it down - another issue I currently have is that I’m losing weight for no apparent reason, I’m getting blood tests done next week, so I think that mucking about with my diet too much is not going to be a good thing just now.