Has anyone tried or have an opinion on the gluten free diet recommended by Jan de Vries? A colleague at work gave me his book on Friday and the results reported In the book seem remarkable!
Hi Ashlee! I personally don’t believe that you should cut out any of the food groups from your diet unless absolutely necessary, being a healthy weight and eating a balanced diet is more important 
Gluten is found in the most common carbohydrate foods and carbohydrates are an important source of energy for your body. Also cutting gluten completely out of your diet is extremely difficult - just speak to anyone unfortunate enough to have Coeliac disease where they have no choice but to cut all sources of gluten from their diet. So many everyday items contain gluten, there’s the obvious ones such as bread and pasta but check the ingredients of other items and you’ll find gluten in things like tomato sauce and crisps too! Also I don’t think I’d last for long on a diet where I wasn’t allowed the odd cake or biscuit I haven’t read this book but as far as I know it has not been properly researched and so the claims in the book cannot be backed by scientific evidence. That being said there are a few diets that are supposed to benefit those with MS which have also not been evidenced but many people find them beneficial so at the end of the day it is your decision!! Hope this helps! Lynn
Hi, I don’t have that book, but I eat gluten-free. I started in 06 and it made a huge difference to my fatigue and nerve pain. I can cheat occasionally and get away with it, but if I eat bread for 2 days in a row, my nerve pain in my hands and feet horrendous. Finding a diet that may help (it may not) is difficult. Some people swear by low fat, some by no dairy or red meat, but after 11 years, I pretty much know what makes me feel good and what doesn’t. I have to (on doctors orders) eat a very low-carbohydrate diet to stave off diabetes and at my last blood test, all my levels were in the normal range. That was the first time in 15 years and I think it was down to Vitamin D3 and a really strict diet. I have another blood test due this month and I hope it will still be fine. The other poster who wrote that carbohydrate is an important energy source is partially correct, but not in my case. I do just fine without bread or pasta or rice, but I do miss eating lots of apples. I can only have one occasionally now, which is a bit sad, but it’s better than diabetes. There are a few people who don’t eat gluten here and who find that it has helped with fatigue and pain. All I can write is that before I stopped eating gluten, life was awful. You may be different. It’s one of the most difficult things to do, to find the right diet - or even if you need a diet. Some people eat what they want and feel fine. If you are interested in cutting out gluten, do it bit by bit. Buy gluten-free bread and replace your usual bread with this for a couple of weeks and see how you feel. Don’t try to cut out too much at once, or you won’t be able to tell if there’s a difference or not. If you want to know anything more, please ask. I’m happy to help with the stuff that I know about through experience, low carbohydrate diets, gluten free or even raw fooding. best wishes, K
I’ve been coeliac all my life (diagnosed at about 3 years old i believe)… So can’t comment on how it affects my MS really as always eaten gluten free and diagnosed wth MS only this year!!! it is hard to do as absolutey eveything has wheat starch as an added cheap ingredient - even things you wouldn’t expect. The main thing is balancing everything still - I have to eat a heck of a lot of rice and potato as they’re pretty much the only carbs I can eat and they’re starchy ones, not complex carbs 
If there is anything you need to know specifically about the diet or anything let me know! K
Hi, I wouldn’t normally come back with another reply once I’ve given my point of view, but I felt it important to do that this time. I totally agree with K in that whatever works for you is a good thing and if you find that a gluten free, swank or best bet diet work for you then that is fantastic And I’m really glad that K has found something that works for her! However I did want to clarify a couple of things, mainly because I am a registered dietitian and diet is important to me personally and professionally. I am not ‘partially correct’ in saying that carbohydrate is an important energy source, I am completely correct. In a healthy balanced diet (and for those that are not medically advised otherwise) carbohydrate should make up around 55% of your diet and by cutting gluten out of your diet you are restricting your options for getting this proportion. As Keith has said, he needs to eat a lot of rice and potatoes Obviously it is possible to get the energy you need from other food groups i.e. protein and fat but increasing these can bring potentially lead to other problems. While I totally appreciate that you have been given medical advice otherwise K, for the majority of the public the best way to stave off type 2 diabetes is to be at a healthy weight and exercise regularly, there is no need for a low-carbohydrate diet. Even for those who have developed diabetes current recommendations do not include a low-carbohydrate diet. I just wanted to clarify this for anyone else who may be reading these posts. Take care Lynn
“I am not ‘partially correct’ in saying that carbohydrate is an important energy source, I am completely correct. In a healthy balanced diet (and for those that are not medically advised otherwise) carbohydrate should make up around 55% of your diet and by cutting gluten out of your diet you are restricting your options for getting this proportion. As Keith has said, he needs to eat a lot of rice and potatoes Obviously it is possible to get the energy you need from other food groups i.e. protein and fat but increasing these can bring potentially lead to other problems.” Yes, in a healthy person who does not have metabolic syndrome. I’m trying not to raise my blood glucose levels. If I were to eat a carbohydrate-rich diet, I’d develop type 2 diabetes. I have great blood test results now, but spent years fruitlessly trying to eat a very low-fat diet, which did nothing except give me terrible indigestion and even worse triglyceride levels. The pulse and brown rice diet, that was recommended didn’t work. It wasn’t until I moved doctors and was advised to try Atkins, that everything started to become normal. Now, I eat a Paleolithic diet. My energy comes from nuts, seeds, avocados, fish, meat and lots of green vegetables, berries and moderate amounts of fruits. I do have a very high risk of diabetes, but surely, with blood glucose and triglyceride levels in the normal range again, the diet (which my GP also follows - and on the recommendation of my endocrinologist) then this is the correct diet - for me. Like MS, which is so difficult to treat, this sort of syndrome (high fasting blood glucose levels, triglycerides, low HDL, moderate/high LDL) is also difficult to live with. I’ve been on this diet since 1999. I’m well. There are no long term implications - except if I stop eating it. I was very ill with fatigue and nerve pain in 2006, after a long relapse, which was when I stopped eating gluten. I had eaten small amounts of gluten before this, but didn’t feel well. There are many conditions that a low-carbohydrate or even ketogenic diet help, such as epilepsy in children. There’s nothing wrong or dangerous in eating a low-carbohydrate diet, if you feel well and your blood glucose levels are fine on it. If I ate more carbohydrates my blood glucose levels would rise and as I’m insulin resistant, I’d end up having to either take Metformin or even insulin. I’m determined not to become diabetic and I’m sticking to my diet. If a person is insulin-resistant, then where’s the logic in advising someone to eat more carbohydrates? Sorry, that advice for diabetics is finally being challenged. All it does, is force people to take more insulin. You are a dietician. I’m a person who is well, after choosing to try a gluten-free diet. I’ve experienced what happens when I eat gluten. We won’t agree, but my view is as valid as yours and it may just resonate with someone else who is living with pain and fatigue and who is prepared to try a diet. I used to hold the same opinion as you. It took months of misery and pain and fatigue for me to try diet. I was amazed that it worked and I’m very grateful to the person who recommended trying diet as one more approach to calm the MS.
I apologise if I have upset you K, that was not at all my intention. I never said in the post that what you were doing was wrong but it is very personal to you. My post said ‘unless medically advised otherwise’ and you’re obviously someone who has medically been advised to take a low-carb diet and therefore what you are doing is completely correct for you. I was just concerned about other people reading the post and picking up misleading information because for healthy individuals (MSers included) a balanced diet with a healthy mix of carbs, protein and fat is recommended. I’m sorry that you have to put up with Metabolic Syndrome on top of MS and I’m really glad that you are keeping well with the regime you have I’m not going to go into all the other points that you have mentioned because to be honest it all has nothing to do with the Ashlee’s original post and just adds fuel to fire. Sorry Ashlee that your post has been taken over, hopefully others will offer you their opinions on gluten free diets. I think I’ll just crawl back to my wee corner and hide for a while Best wishes Lynn
Just wanted to say that I normally follow a low carb diet ( as well as letting me loose a lot of weight) and I was advised to by my GP as I have PCOS, boarderline type II diabetice & IBS my colesterol was high and it has helped all of this but if / when I cheat and I do I feel awful and even if its for something special like christmas and Ive eaten lovely food I cant wait to go back to low carb just to get my energy back and brain working again! but I do love a takeaway and cake so its a yo yo battle. xx
Back in 1995, my GP phoned me as my cholesterol was so awful. I know now, that I wasn’t at any risk, as I was still of childbearing age, but I still tried all the statins and none worked. The diet, which was all brown rice and lentils and no fats was horrible. I’ve discovered sugar-free dark chocolate, which helps to make me feel like I’ve had a treat. Your metabolic profile is very like mine. Are you hypothyroid as well? You know that LDN is supposed to improve uptake? Well, my endocrinologist reduced my thyroxine to 137mcg. It’s an odd dose, but it seems to be working. She’s very skinny, but she’s really enthusiastic about keeping carbs as low as possible. I find About.com to be really helpful and they have a great newsletter. There are no takeaways here, so no temptation. There is always something to tempt us… I hope you are well. xxx
We have atkins bars so there is a safer option but I do love to cook!! however we discovered a way to make a cheese n ham tostie with low carb tortilla wraps last night while watching Masterchef ( albeit a bit hungry!!) and got a few pounds to loose for a wedding soon! We take LDN I dont have a problem with thyroid but my partner who is also MS has a low thyroid hormone level so hopefully it will help this too! take care Cheryl XX
It’s jam making time, which is always dangerous. I have a great recipe for a sugar-free apple butter, which is a variation on Membrillo (quince paste). Then there’s chutney…oh dear. Ah well, self-control with the tasting or I’ll be sent off to the endocrinologist for another lecture about tiny little portions of carbohydrates. However, it’ll be in rapid Spanish, so I can smile and nod and work out what she was saying later. My MS brain has a bit of a time-lag on it. I’m catching up, but still about 10 seconds slow on conversations. I like the idea of low-carb wraps. Nice to catch up K xxx
Thanks everyone for sharing your experiences and interesting advice, it’s definatley given me something to think about Take care Ashlee
l read about - on here - the Barry Groves eating regime. He has been following this diet for over 40yrs. lt follows the hunter/gatherer natural way of eating and is beneficial to everyone - especially diabetics/coeliacs/and pwms. Recently, we have seen a lot about Terry Wahls - and her diet for ms - which is just a copy of Barry Groves. When l heard about him l just googled his name and read all the info. Then l sent for his books from amazon. lts very interesting - and easy to follow.
My OH is diabetic - so Barry Groves diet is beneficial to both of us. lts gluten free - but you eat lots of fat and green veg.
No cereal or grain. l feel so much better if l cut out bread/pasta etc - And its a good way to lose weight without feeling hungry.
Do ‘google’ Barry Groves and see for yourself.
F.
Hi Frances,
I read his blog. He’s pretty sensible.
I like Dr Briffa’s diet too - quite similar. There is an MS specialist in Poland who advocates a ketogenic diet. I emailed him once and he actually replied and it was interesting stuff.
There’s always something - a diet or treatment or drug that works for someone. That’s the irony of MS. There’s no ‘one size fits all’ treatment or diet.
best wishes,
K
xx
Dear Jaquiek - if you’re cutting out dairy please take care that you are getting enough calcium from other sources or a supplement- so important for our bones. Take care xx
My mum also had MS - she tried a gluten free diet (this was about 20 years ago, when the only place you could get gluten free stuff was a health food shop!) - it didn’t work for her, it just made an already slim woman lose a hell of a lot of weight. But you don’t know until you try. I have cut out red meat, and cut down on sat fat - don’t know the last time I ate a croissant - I do feel a bit better for it, and if I eat red meat now, I’m floored for about a week. There are lots of different diets to try, it’s just a question of which one works for you.
Good luck,
Luisa x