Hi,
I am thinking of changing my diet to gluten free?? Any opinions or advice on this and if it helps things in terms of the M.S?
thanks in advance xxx
Hi Lisa
I agree with Val. I really doubt that a gluten free diet actually does much good for anyone except the gluten intolerant or with coeliac disease. And thereās been no actual scientific studies on the benefits of a gluten free diet for people with MS (as far as I know).
But, many people do think going gluten free makes them feel healthier, or less bloated or something.
So Iām sure youāll have people on here extolling the benefits of a gluten free diet.
Sue
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Try cutting gluten out for a few weeks and see if it makes any difference. If not, then there is little point in continuing.
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Iāve been gluten free for most of my ms life (22 years) and Iād recommend it. If I were newly diagnosed I would do the same again except Iād be even stricter with excluding it.
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Iām dairy and gluten intolerant, and itās so socially restrictive that unless itās making you ill, I wouldnāt cut it out.
People that say āoh yes, but I lost weight/wasnāt bloated when I cut it outā are forgetting that theyāve essentially cut a large number of calories from their diet, hence not feeling as full and losing weight.
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Thank you everyone. Thinking I will probably leave it. Thanks for all your advice xxx
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lf you watched the BBC 's Trust me l am a Doctor - last week. They did a trial on gluten-free - and those taking part- all - apart from 7- said they would certainly stick to it.
l am so much better if l stay gluten-free. Have more energy - and far less stomach problems.
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You may be one of those with an intolerance though.
Of course people in that trial would say they felt better, because itās been all over social media for years how awful gluten is, but so have the stats of how many report an intolerance falsely.
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And of course, many people think they are eating a gluten free diet because they have cut out products that directly look or seem like they probably contain gluten, ie. bread, flour, most cereal products. But in actual fact, a completely gluten free diet is extremely restrictive. Many things that you think will probably be gluten free are not. For example, soy sauce, anything with monosodium glutamate in it, many/most canned soups, most beers, even jelly babies have flour on them, (my mother used to have to wash them for my brother who has coeliac disease)!
So if you cut out the obvious things and end up feeling better / less bloated, but are still consuming quite a lot of gluten in other products, itās probably not a gluten āintoleranceā thatās responsible. It could simply be that youāve cut down on calories or on starchy foods that make you bloat.
By the way, real coeliac disease is extremely nasty. Iāve often thought I may even be luckier than my brother in that my autoimmune diseases are MS and Gravesā disease, whilst his is coeliac disease. He was diagnosed at the age of 2 and is now 51. He is disabled and walks with a stick. Heās stick thin, can barely eat anything because his stomach is so sensitive, even walking round a supermarket can be damaging for him if he goes anywhere near the bakery section. He has agonising stomach pains so he only eats last thing at night. Plus, he has quite serious psychiatric/psychological issues, which are also a potential result of coeliac disease.
Sue
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I have recently , albeit, later in life, tried going gluten free and have to be honest , I do feel better for it
I will keep up with it and see how it goes
david
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Gluten in food can cause issues with your immune system and inflammatory responses. There is lots of proof to support this just google.
Gluten now is not the same as it was years ago, its more hybrid, and does interfere in the smooth running of our bodies.
My brother was nearly bed ridden with his rheumatoid arthritis, and was told to go gluten free which he did, and after a year is a new man.
The point is 1 in 30 people are sensitive to gluten, and unless you have been tested you wont know anyway. I am to a point i cut back on main stuff, cakes, bread, cereal and pasta. If I eat any of it now my stomach blows up. I am sensitive because i was tested, i had no idea i was. Weirdly enough i was sensitive to bananas too which made sense as when ever i ate them i got a stomach ache lol.
I believe it is recommended for MS to go as gluten free as possible to help dampen down the inflammation responses. Its all quite technical but there is the proof out there which would explain it much easier then I can.
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I went gluten free way before I was diagnosed due to bowel issues and my Mum has coeliac disease, I donāt. The thing I noticed most quickly was that Iād wake up before my alarm in the morning - thatās unheard of for me!
Anyhow, given my MS diagnosis, it seemed smart not to promote fatigue! I probably have a weekend off every few weeks and my husband knows I wonāt wake early so we work round it.
Truthfully, the things I really miss now are quite limited - proper Pizza Hut deep pan pizza & Krispy Kreme donuts - everything else is a bit of a disappointment to be honest. We had breakfast at Cafe Rouge one day so I nabbed a bit of my husbands baguette to have some of that gorgeous french jam - my husband just looked at me and said āthatās not like you remembered is it?!ā. I donāt get too hassled about sauces etc. as you even need to boot silly things like oxo cubes & HP sauce but I couldnāt ever go back to eating white bread every day, I just donāt like it that much!
Sonia x
My Mum is like that about bananas & avocado, youāre not alone on that one
Was diagnosed with RRMS about 2 years back and am on Tecfidera which seems to be holding relapses. Have also been taking Gabapentin for back pain but not of much benefit. More recently have developed stomach cramps and prolonged bouts of bloatiness and constipation. Now thinking I am also gluten intolerant. Wonder is back pain from my abdomen as opposed to spine. Have taken break from gabapentin as could be making constipation worse. Any advice much appreciated??
This question keeps turning up again and again.
Adherents of the gluten free diet regardless of proven intolerance or coeliac disease often swear by their choice to eat as little gluten as possible.
Others donāt believe that a gluten free diet does you any good unless you have coeliac disease.
I donāt think we will ever reach a consensus. So if I were you, search around the internet, try it out if you want for a while (just keep in mind that a true gluten free diet does not mean only cutting out bread and products containing flour), and see if you feel better.
Sue
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Thanks Sue. You are right going gluten free is not an easy choice,as it is not only about flour derived products. I am willing to give a try and will report back.
Iām Coeliac and can confirm being gluten free is no help what so ever to my MS symptoms.
i tried the Best Bet diet when first diagnosed.
that is r****eally restrictive!
no dairy, no gluten, no legumes and lots of other stuff on the banned list.
lots of oily fish to be eaten.
(i canāt stand the stuff any more)
i stopped enjoying food and lost a stone and a half.
went from a size 14 to size 10.
of course iād been indoctrinated that size 10 was desirable but became as weak as a malnourished kitten.
my son gave me a stern talking to so i had a bacon butty!
since then iāve been half vegetarian and that has had a much better impact on my wellbeing.
gluten free bread tastes horrid.
i buy wholemeal bread from a local bakery and that doesnāt bloat me at all.
Interesting Catwoman Carole from point of view you also suffered bloating with foods rich in gluten. I am currently on hols and get very bloated each night on a normal diet and have to take 2 laxatives before going to bed. This surely aint normal and when I get home I will have to give gluten free a try. I love bread but recently white in particular just does not appeal to me. I am honestly hoping I can get a handle on these digestive issues as is they make me more worse than my RRMS.
Hi,
I have a similar thing. I also reduce my gabapentin for some days sometimes and knock it off altogether (with the agreement of my GP even though he shakes his head) as I feel like it blows me up, expands everything, I feel like I am being stretched and it also creates tummy problems. I have also tried experimenting with cooking once a month as this is all I can manage, with gluton free flour or rice flour. Well, I eat the things but they arenāt very nice. My cakes look like biscuits, my biscuits look like cakes, I call them biscakes. Anyway, I chop them up and put them in the freezer for emergencies but mostly they are vile. The worst one yesterday was eaten by the crow who didnāt seem to mind!
I have turned to only eating a tiny amount of bread each month so that I can if I want it, have a big bap with naughty cheese and nice salad, or something like that. Then I donāt have any more bread for ages otherwise I feel horrid and my tummy just doesnāt know what to do. I have substituted stodge with rice and peas a lot of the time, which fill a gap and I love them anyway.
I also find that taking my medication has to be clear of citrus fruits, this upsets me instantly. So I take my medication in the mornings mostly, then have fruit late afternoons.
I find that I can eat flat breads without any problem and flat nans. Perhaps these might be worth a go first to see if this makes any difference. I am happy to give up certain foods if I feel good, but nobody is ever going to take my cups of tea off me!