Gulten free diet with lupus

[Flows]

Hi just been researching gulten free diet for lupus to help with inflamation. Is anyone doing this or tried it and found any benefit. Id be really interested to hear peoples experiences. Thank you

[Teanau22]

Hi, I tried it and didn't find any difference, I still had flares that put me in hospital. I do still try to follow Gluten Free, as it made me feel less bloated and sleep is better. As always, these things are individual as not everyone's Lupus is the same 😄

[Flows in reply to Teanau22]

Thank you

[Petrof]

I follow Gf diet for about 4-5 years rigorously and before that with some occasional slips. Historically I had very very high titre of lupus antibodies incl. rheumatoid and I had thick blood with symptoms. Since starting Gf diet all antibodies were gradually decreasing and now for about 3 years they are normal. My digestion has improved too.

[Flows in reply to Petrof]

Thank you for replying i am going to give it a shot its the only way i am going to know really x

[Petrof in reply to Flows]

True.

[Graystar]

Hi Flows, I tried a gluten free diet for around a year but I found it made no difference, although I still eat a fairly low gluten content diet, more to eat less carbs than gluten. Everyone is different though and if it helps you and you benefit that’s great 😀

[Flows in reply to Graystar]

Hi thank you for replying yes i find carbs do affect me not massively but enough to notice the difference. I think i will try it and see. Look after yourself x

[JCZW]

Morning flows

I am lactose intolerant. Have been for approximately 12 years. I decided to try gluten free as well. I've been on it for 4 weeks now and can honestly say I'm starting to feel much better.

Before I started it my gums were red raw that has all cleared up.

My stomach also feels better.

I'm determined to keep going with it. I read that it helps with lupus sle .🤞

[Flows in reply to JCZW]

Thank you 4 taking the time to reply its so useful to communicate with people who understand

[Lunareclipse1111]

I was diagnosed with lupus at 26, I’m 42 now. I’ve always been obsessed with diet and looked into leaky gut syndrome very early on. I’ve always been a huge believer we can heal ourselves. I don’t eat gluten, sugar, any processed foods, hardly any alcohol for the entire time. I drink distilled or hand collected spring water; I work out, I meditate, I sleep a lot. Who knows how bad I wound have been had I just eaten like most people do, i can’t prove anything, but i signed out the hospital system at 28 and I’ve just simply never been back. I get the odd period of lethargy which has gotten a lot better over my life it used to be really bad at some points with weak aching body like I had the flu but it’s really not that bad anymore at all. I would say I pretty much live a relatively normal life just adapt slightly to work from home and live a little more gently than most. Most my symptoms have cleared up to a good level. I’m also into supplements Turkey tail tincture really helped me turn a huge corner a few years ago I also take amino acids, Irish Sea moss, Shilajit and various other things. I would say diet has helped me immensely live a good quality of life, if I ate just one bit of junk food now I would feel shit immediately and notice the diffefence. There are a lot of studies linking leaky gut to lupus, I believe this is highly possible as just before my diagnosis. I was in and out of hospital getting all kinds of checks as to why my stomach was so bad. I had stomach issues before my diagnosis so was already on a journey of trying to fix myself. I never even ate badly, probably to normal people I ate healthily but i I guess I would be considered extreme. This is fine for me though, it helps me feel better, have a higher quality of life and everyone just assumes I’m much younger than I am too so it’s all a benefit. To me no food is worth feeling sick for.

One other thing I recently starting eating a bit of sourdough as a treat then got into having a slice every day, I started getting arthritic symptoms in my wrists, as soon as I stopped the bread they went away pretty much. The same happened a second time and that was it for me I’m back to no grain. If I want bread I’ll Make it myself with buckwheat.

[Flows in reply to Lunareclipse1111]

Thank you so much for telling me your experience yes I am strong believer in the ability to heal ourselves its journey i guess. Im looking into sea moss as well. But ive noticed if i eat carbs / gulten i dont feel great not massively but enough to notice the difference. X

[glasgow-girl]

I stopped eating gluten in 2020. I found my mouth ulcers reduced and the blood blisters in my mouth which I encountered almost every day, reduced. If I eat gluten the blood blisters return. Although I have avoided gluten totally except a birthday cake in 2021.

If I got blood blisters I would revisit foods and find they had gluten. For example, malt vinegar and marmite. It is certainly worth trying as I obviously have an inflammatory response to it.

Good Luck.

[Flows in reply to glasgow-girl]

Thank you i think i will try it

[Beeswax15]

Hi,

I’m per lunareclipse. I was diagnosed in October last year but have been living with symptoms for over 19 years. I cut gluten, went lactose free and I see a Nutricionist for supplements that are right for me. I take an array of different ones and feel a lot better for it. Stopped taking all prescription tablets but hydroxychloroquine. It’s amazing what the right supplements can do!

If I eat crap then it impacts … simple. Eat as clean as you can and you will feel much better. My nutritionist said to always check ingredients as gluten free can still have a lot of vegetables oils as a substitute and these are not good for inflammation. I’m particularly sensitive to rapeseed oil. I get ill if I consume it.

It’s trial an error but defo worth a try. If you can work with a nutritionist and they will help you find what’s right for you with some simple tests.

Good luck 😉

[Flows in reply to Beeswax15]

Thank you for sharing it is appreciated

[MusicalFurbaby]

Hi Flows, it’s not so much the gluten but the carbs for me. I feel so much better on a low-carb diet (no bread, rice, pasta, potato or pizza). That is to say, I don’t know if I feel better on low carbs or just soooo much worse on high carbs! I substitute carbs with high protein and high good-quality fats, eg. coconut oil, olive oil and butter.

Having said that, we’re all so different, it might be worth trying to see if it works for you. Some people swear by a low-dairy diet, but I find dairy causes no hassles for me. It’s worth a shot!

[Flows in reply to MusicalFurbaby]

Morning thank you so much for sharing. Yes i notice i feel better without carbs or eating very little of it. Its just been able to speak to other people about things especially when it comes to having lupus because not alot of people understand. People always saying you look so well but if only they knew lol

[MusicalFurbaby in reply to Flows]

Yes, a lot of our symptoms are the invisible kind! You are right, most people won’t get it unless they are experiencing the same thing. Feel free to post about this kind of thing anytime. Good luck with the diet—it sounds like you might be on to something with the low carbs, like me!

[Flows in reply to MusicalFurbaby]

Thank you it really helps getting other peoples experiences

[KnitSewPurl]

Hi Flows,As for me I was told to have IBS for 25years , but had diarrhoea it got gradually worst over time that every time I consume anything with gluten ,oats ,barley I ended up on the loo. I a day I was going 4-6 times . So , finally stopped it even though my test came back negative for celiac because I was not able to tolerate the test.

I took the decision to go totally gluten free it has been now 2years . Even my UTI stopped , my sore inflamed gum stopped as well.

Yes, I noticed a huge difference, it evelated the pain and muscles inflammation I had. I don't get them any more.My last 2 full profile ANA test came back neg . But my CRP is still slightly raised. Not as high as they used to be.

So on the hold , much better life clearer mind oh yes you don't get the brain fog .

I just take normal vit supplements

Also I avoid , garlic , mushrooms, as they cause inflammation for me.

Hope you are able to make a good transition

[Flows in reply to KnitSewPurl]

Thank you

[BeingStrong]

Hi Flows, thanks for the diet conversation. Our diets plays are important part in how our bodies feel irrespective of whether we have an autoimmune disease or not.

For me, I have been gluten and dairy free for about 3years and reduced my in take of refined sugar, beef and processed meat. My joints pain, bloating, some fatigue, smelly farts, severe heart burn and excessive saliva production have reduced.

I’m generally more mindful of what I eat, listen to what my body is saying and I’m excited at the prospect of getting/feeling better.

Best wishes on your journey and keep us posted

[Flows in reply to BeingStrong]

Thank you i really appreciate people taking the time to respond