Gluten free anyone?

Hi everyone, Happy New Year to you all.

Every now and then a thought comes into my head that I have to take note of. I suppose it happens the same time as a flare up of MS symptoms.

The lovely lady who gives me a massage/reflexology session; has recently told me of a former client who became gluten free and as far as he was concerned his MS was all but gone.

Now i know that everyone’s journey with MS is diffent and I eat very little food that contain gluten anyway.

I have an MS friend who has Celiac disease and eats gluten free food but does not stay away from gluten entirely. She does seem better than many of my MS friends, her walking is better than mine and she’s over 70.

I suppose what I’m asking you all; has anyone had notable changes in their MS when becoming gluten free? I do not believe I have Celiac disease but am considering cutting gluten from my diet but have tried it before and found it difficult to find any glueten free food to replace bran; as I suffer constipation.

Thank you for any replies.

Wendy x

Hi Wendy,

Happy New Year.

Going gluten-free made a massive difference to my MS. It was well-worth the experiment - I had terrible fatigue, was on Amantadine, about to start Modafinal and my nerve pain was awful.

It was thanks to the lovely Lollipop who challenged us back in 06 (or thereabouts) to try diet as a supplementary approach that I thought, hmm, yes.

If you use flax seeds, then you won’t need bran. There’s a recipe for flax seed bread on (low carb info) that’s brilliant. It’s a bit of a treat, as it uses 5 eggs, but I also use it to make drop scones if I feel I need something like that.

If you eat yoghourt - try mixing flax seeds with it and leave it for 30 minutes - it’ll turn into a porridge like consistency and you can add berries, or chopped apple.

You can also use almond flour - it’s very nice as well.

Since 06, I haven’t suffered much from fatigue, just odd days or sometimes a week and my nerve pain is bearable. It was awful with 50mg of amitriptyline, but I only need 25mg at the moment. It varies, depending on what the MS is doing.

There are many diets. I eat a diet a bit like Frances (Campion) and it’s gluten-free, low carbohydrate, as I’m at risk of developing diabetes.

I hope you find the right path through the diet maze. (low fat, low carb, gluten-free, Jelinek, Best Bet, Swank, Paleolithic…)



Hi K

Thank you for this information, I will save it to a file, especially the flax seed. I’ll be taking a visit to the health food store tomorrow. I did try the Jelinek diet for a year but after another relapse opted for Betaferon. I do try and adhere to some of his advice though.

Wendy x

Sorry to hear that Pat, I hope you recover from it soon.

Wendy x

I started gluten free 6 weeks ago and not seen any benefits from doing so yet, was ready to give up. Can anyone tell me how long it was before they saw any benefits and am I being a bit impatient? I have found it surprisingly easy, just expensive.


Fizzy x

gluten free a week, i feel awful is that right, if so when will i feel better.

To be honest, you’ll find yes and no is the answer to that. Some websites/commentators will say yet, it’s a good thing and some won’t.

This is the really frustrating issue with diet. Going gluten-free can be really easy or hell for the first month or so. I gave it a month to start with and I felt better after the first two weeks. At the end of the month, I was feeling great.

If I eat bread (and OMG, the bread here is amazing) then I crave it afterwards. I dream of it, I want to eat it all the time. Sometimes I give in and have a splurge - but very rarely.

I tried an experiment a few years ago and ate bread for a week. The nerve pain in my hands and feet increased each day until I had to stay in bed, as walking had become so painful. Now, that’s just my experience. Everyone’s different.

There are so many diets that may/can help with symptoms. I still take beta-interferon, as my diet just keeps me (and just me) mobile, but it’s not the answer to stopping relapses.

We have few pleasures with MS. Diet doesn’t have to be a sacrifice. I can’t eat just anything. I put on weight really easily and spent a lot of years resenting people who could just eat what they wanted and stay slim.

My GP recommended Atkins for me in 1999 and I gave it a try and couldn’t believe how nice it was to eat a meal without indigestion and oh, the food was/is lovely.

Many people do well on an ultra-low fat diet (Jelinek or Swank). It’s very frustrating that there isn’t a one-size-fits-all diet - or even medicine for MS.

I’m definitely giving it a go - but had to have my MS Christmas meal today first, plus some things left in the cupboard. Also am trying out the flaxseed as a good source of fibre, must say it’s working so far I haven’t eaten any bran for around 4 days. So thank you for that advice.

Wendy x

I have been wheat free and dairy free for 6 months now and have never felt this good since I was dx 7 years ago. It has really changed my life, I don’t suffer with the pain in my legs half as much and the fatigue is soo much better too. I was doing everything the doctors and hospital were telling me because I thought these are the professionals but not once did they mention what you eat can affect your symptoms, I’m not under my consultant anymore, I’m off my copaxone injections and I’m taking my own natural path now and it’s working wonders! I have regular accuppuncture and take a lot of vitamins and herbs along with my wheat free and dairy free diet. After doing a lot of my own research on food I also discovered tomatoes are not good for us ms’ers and I avoid those too. Everyone is different though so you just have to work out what it is that triggers your symptoms off. Hope this helps and you find the right way for you, Natalie x

Oh dear sorry for the hundred replies ha my phone just decided to send all of these- oops!

I agree!

We had a very nasty virus over Christmas and all I could think about was eating bread. I gave in and ate bread for a day and don’t regret it. I really enjoyed it and just for once, didn’t crave it - (to the point of dreaming about it), afterwards.

I still eat dairy. I have a Greek yoghourt and linseeds with a chopped apple for dessert and I have cream in my coffee.

Best to eliminate just one thing at a time when experimenting.

I don’t know about changes but I’ve been gluten free from the outset after reading some research. I don’t think it’s done me any harm. I once was told it might be wheelchair scenario after twenty or so years. Well, it’s been 19 years and at the moment I feel a long way from it.