Gluten and Lupus

Hi fellow Lupies

I have recently looked at a study that has been going on in the States, where it seems that there seems to be a lot more interest in diet and links to lupus, the study looks at people going on a gluten free diet. I asked about this when I when to see my rheumy recently and it was suggested that I try reducing the gluten in my diet but not going completely gluten free as there is more sugar in gluten free foods and keep a diary of anything that is particularly noticeable about the way I feel. I was told that not enough research has been done in this country with diet and lupus but if I would like to give some of my blood to the research centre I was welcome so I did.

OMG, WOW what a difference!!!! I stocked up on Gluten free bread, biscuits, cereals and crackers and after a couple of weeks noticed quite a considerable difference in the way I felt in general! I have even got hair growth after being almost bald for the last few years, my abdominal pains have eased a great deal and the fatigue is better than it was it has not gone but I do have more energy than I did. OK I know this food can be expensive but after shopping about I have found that it is much cheaper in some places than others and to feel this much better I am happy to pay a little more. I felt I needed to share this with my fellow lupies and hope that some of you may benefit from tweaking your diet a little and if we push hard enough maybe we can get the research done in this country that they are doing in the States.

Has anybody else tried Gluten free or reduced diet and found a difference in the way they felt?

Madmagz x

15 Replies

  • Hi MadMagz,

    Since my diagnosis I've completely changed the way I eat. It started as a dairy allergy that developed shortly after I started taking warfarin. After that I noticed that I always felt worse after bread, pasta or anything cakey so I cut out gluten too. Then I noticed my joints were always really inflamed and creaky after eating meat so that got the boot as well.

    After all that I'm usually feeling pretty well at the moment!

    That said I'm now experimenting with capsaicins (tomatoes, aubergines, potatoes, chillis and peppers) they seem to have an impact too (they're known toxins to humans but 'most' people can tolerate them) but I'm trying to see if it's one I can live with or whether it too is getting worse over time!

    I'm so glad it's working out well for you without gluten, you're totally right, there are loads of good cost effective alternatives these days. I've even perfected my gluten and dairy free macaroni cheese now! That was such a win as it was probably my most missed comfort food in winter!

    Tip for any dairy intolerant cheese lovers - try Violife cheeses. They're amazing for cooking with and it's the only 'cheese' I can just eat out of the packet like I used to do with cheddar!


  • That's great thanks for getting back to me so swiftly I am glad that I am not alone in finding diet is helping, I still seem fine with dairy but do take vitamin D to help absorb the calcium as I avoid the sun. Macaroni cheese sounds good you are a woman after my own heart I love it so will be buying a bag of flour for making white sauce. ;-) . Good luck with the capsaicins I hope that you find some benefit from your trial and error, I am a great believer in trying things before adding more meds.

    Take care

    Madmagz x

  • Hey jojo-lianne. I was sensitive to the capsicum family for a while. I had to cut out all those items you mentioned for a while, which was tough. Cutting out tomatoes is tough! But once I'd done that, I was able to re-introduce them gradually, which was a relief!

    I'm still careful - it's very easy to fall into the habit of having potatoes and tomatoes every day, but I try to avoid doing this, and make sure I rotate what I'm eating.

    You're spot on with the Voilife btw! I don't have many fake cheeses as sometimes they're full of mad stuff, but this one is good now and then. Sheese is also OK, but it's not melty.

    Would love your recipe for gluten free and dairy free mac and cheese if you're happy to share!

  • Yeah I'm gluten free, and vegan. And basically I don't eat anything that isn't a wholefood (with the occassional exception). I also avoid sugar and all grains. It's made a MASSIVE difference to my health. I'd recommend it.

  • Thanks for that, I don't think that I could go vegan, I am a Mum and like to give my family a balanced diet I also enjoy meat and feel that I need it for the nutrients in it as I have so many other allergies I would get all my nutrients from tablets if I cut too much else out and already take 39 tablets a day and that does not include pain relief! Do you mean you only avoid refined sugar or all sugars, glucose, sucrose and lacotose? As I said in my post my doctor advised me to reduce not cut out gluten so I don't think I would avoid grains altogether as I would need foods to keep me going from one meal to the next and for my shifts, I work on the wards of a busy London hospital, where do you get your energy from?

    I am glad it has made a great difference to you that is very promising but that much of a change would be very drastic for me.

    Thanks for taking the time to get back to me

    Madmagz x

  • I follow what Lucy described too except I eat meat (mostly good quality chicken that I make in the crock pot). I have had an IgG food panel where they test your blood against most common foods to see what you react to. I have almost no reaction to gluten, but all the other preservatives and sugars they put in bread put me in pain. Gluten free bread makes me feel worse than "normal bread". For energy, I go to things like bananas or dates.

    In summary, what worked for me is no processed sugar, no preservatives, no foods that come out of a box, no dairy, careful with packaged spices as if they have silica, etc to keep them flowing that makes me hurt, and I think that is it. It was very hard for me to figure out what I could eat, but now I am adept. Examples include using spaghetti squash for pasta, making my own ice cream that is coconut cream based, making cookies from almond flour, etc.

    These changes had a MASSIVE change for me like Lucy described so I want my fellow lupies to feel as good as I did from making changes. Everyone's body is different so what worked for me won't necessarily work for others, but I have first hand witnessed the power of the food! :)

    I also take a high powered probiotic, easily absorbable vit D, magnesium (brand Calm is supposed to be the best at least in the states), and some herbs from a Chinese doctor. Have been able to reduce/eliminate my plaquenil after 2 years of these changes.

    Hope you continue to feel better!

    All the best,


  • Thanks for that, it is interesting what you say about the packaged spices and pasta. I totally agree that everybody is different, thanks for taking the time to reply. I have often wondered if a chinese doctor might be worth consulting as there is one in our town and I have benefitted from accupuncture.

    Take care

    Madmagz x

  • The Chinese herbs work great for me. I have stopped taking them a couple of times thinking I don't need them anymore and I always go back. They seem to really help me with inflammation and sharp joint pain. The herbs I used are the Lupraid and Arthraid at this website. You can see the ingredient list and hopefully get something similar from your local chinese doctor.

    Of course, I was skeptical/scared at first but I was getting regular blood tests at my Western doctor and when my body didn't go hawire, I kept taking them. I feel bad enough off of them (it take a few weeks for my symptoms to return) that I ended up thinking I'd rather have some long term consequences than be in this pain and misery every day. So, may not be right for everyone, but the choice I made!

    Sending hugs!


  • I'd say that a vegan diet IS balanced! As long as you keep it healthy - same as a meat eating diet - that can be fairly healthy or really unhealthy depending on what you're eating. I do take quite a few supplements, but that's nothing to do with being vegan - I've always taken a lot of supplements because my digestion just doesn't work properly so I tend to have problems with malabsorption. Funnily though, when I was a meat eater I was deficient in iron but since I was vegan, I have never been iron deficient! Eating this way has made it much easier for my digestion so I'm more likely to absorb what I need to from the food. WIth a balanced vegan diet, the only thing you're likely to get deficient in specifically linked to being vegan is B12.

    To answer your question re sugar, I avoid refined sugars, and I don't eat even much fruit, as too much of any sugar upsets my tummy. I've also found timing is important with sugar - so I know if I eat a banana in the morning, that will make me feel pretty rough and tired, but it's fine in the afternoon when it can perk me right up! I use dates mostly to sweeten things, or if I'm making a special cake or something, I use agave or maybe maple syrup.

    It's just personal to me. I cut out grains because if I eat grains, I get tummy problems. I can maybe eat a spoonful of rice every couple of weeks - it's definitely not a staple. I can eat oats and buckwheat and they are awesome staples for me. But anything with gluten will give me a problem. Interestingly, when I eat wheat, the joint pain gets worse.

    In terms of what else do I eat and where I get my energy, lots of beans, pulses, nuts, seeds, oats, buckwheat and loads of veggies.

    I really simplified my diet, and to eat this way is actually very very easy. As long as you are prepared! I don't want to self promote, but to help other people I actually started up a blog of recipes, as folk are always looking at what I eat and asking how to make it. Here's my wee blog if you fancy taking a look and see if anything catches your fancy. I've prepared quite a few dishes for my meat eating man and his two kids, and they actually really like them. The 12 year old even prefers my version of spaghetti bolognaise to normal meat based stuff!

  • Hi Lucy, I've been using vitalite and buckwheat flour for the roux topping it up with organic oatly milk. Add a grated block of violife mozzarella style cheese, as much as you need to make it as cheesy as you want, then add a teaspoon ish of mustard. Keep whisking so it doesn't go lumpy. When it's thickened up nicely add it to your favorite GF pasta. I tend to add cooked peas, chives, a little lightly fried garlic and maybe some quorn bacon to it occasionally and serve with a nice big green salad.

    Hope you enjoy it if you try it!


  • Ooft! That sound GOOD!!! I like using buckwheat to thicken things but I'd never thought of using it for a cheese sauce. Awesome! Thank you!

  • I have both SLE and Coeliac disease. I have read that Celiac disease can occur more frequenctly with SLE. Have you ever been tested for Coeliac?

  • I too have coeliac disease and follow a gluten free diet. I don't eat too much of the gluten free bread and biscuits etc as they are very high in sugar.

    I do cook from scratch and follow a heathy balanced diet. I find that a gluten free diet tends to be closer to a Mediterranean diet and so is naturally healthy. I think eating low inflammatory foods (oily fish etc) is recommended too in SLE.

    I have to say I feel very well on my current regime.

    It is worth getting tested for coeliac disease if you find you're sensitive to gluten. Having coeliac disease does have health implications and needs medical follow up, so it's worth ruling it out.

  • A few months ago I also cut out Bread as it was making me feel ill. I recently returned to eating bread because I started a back to work course and started eating sandwiches again. My stomach pains and indigestion have now returned with a vengeance and also a bloated stomach which I didn't have before. I have decided not to eat bread any more, I am also trying to cut out biscuits as they give me stomach ache also. I also eat less meat now, because i don't think that it tastes right and also bacon. I also take vit D which is a great help to me.

  • Hi, I've been wheat free for 6mths and am feeling the benefits, my R.A symptoms have gone, my mouth ulcers and gut inflammation non-existent. I bake gluten free bread and experiment with coconut flour, doves gluten free, buckwheat and almond flour and have had failures and successes in equal measure. Willing to share recipes.

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