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OH BOTHERATIONS!!!

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.

Thanks,

Luisa x

Sorry to hear ldn did not work for you. Since ldn is not addictive you can just stop at any time you wish. 

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.

Good luck on the Tysabri,

L x

Thanks Whammel, that’s good to know,

L x

hi luisa

 

i tried the best bet diet (no dairy and no gluten) but ended up hardly eating at all.

milk substitutes taste vile and gluten free bread is horrid. it was disappointing because i know a few people who have done really well on it.

it's good to have a night out with friends and to eat normally. it's a shame that it gets us the day after.

have you tried the ldn website for advice? they might be able to advise on amendin the dosage.

it's one of those annoying back to the drawing board situations. 

 

carole xx

 

Thanks Carole,

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.

Very annoying, drawing board!

L x

Hi Luisa

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).

Wendyxx

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.

L x

Hiya

Its only in yer system for 4 hours so you can stop it anytime.

I once ran out for 3 nights-disaster-so never again!

Hope you find something that helps you manage your MS thumbsup

Ellie x

Thanks Ellie, so do I x