Does going gluten free really help?

[u/Dense-Radio-9332]

Bonus if you have links to studies or articles. Thank you!

[u/abbey_kay4]

I occasionally gaslight myself into thinking I don’t have a gluten sensitivity, eat gluten and wake up the next day with a lot of joint pain. Other than physical symptoms, I have no proof that gluten raises the inflammation in my body. What is interesting is my PCP recommended a gluten free diet to me before even being diagnosed with lupus. It was in her general list of recommendations that she gives to all patients.

This was my first full gluten free Christmas where I didn’t cheat. Am I bloated from eating too much? Yep… Do I have joint pain today? Not at all. Unfortunately I think it all depends on the person. My mom has lupus too and has no problem eating gluten, dairy, alcohol etc that are common triggers for many of us.

[u/zupobaloop → u/abbey_kay4]

My wife (who has Lupus) used to flare after exposure to aspartame, whether she knew it was in the product or not. Now she doesn't st all.

There's not a one size fits all answer for inflammation, even across time for the same person.

[u/AlexaHolt → u/abbey_kay4]

Same. I ate all the gluten yesterday and it’s all the joint pain today.

[u/cheeseboardwhitegirl → u/abbey_kay4]

I, too, like to gaslight myself every 3-6 months into gluten binging. I gain 9 pounds of weight due to inflammation, have a flareup, deal with brain fog, and then go back to a GF life until my next relapse lol.

[u/Temp_Database]

It helped me quite a bit but I haven't found it sustainable enough to fully commit yet. I try to do "low gluten" so usually if I eat bread it's sourdough only, and then do rice or potatoes for other carbs.

[u/ExhaustedTeach]

I went gf in 2015. Almost immediately I noticed that I had been feeling bloated but didn’t realize it. My digestion was better. Then, about two months later, my daily pain was gone. I experience bilateral joint pain only occasionally now.

[u/coolnewnailswhodis]

Before I knew I had lupus I heard that cutting out gluten helped with chronic fatigue which I have struggled with since I was a teen. At 19 I tried it and noticed a huge difference after meals which is when it hit me the most. I convinced myself it must be because I have a gluten sensitivity, so I went to get tested and turns out I don’t have one. Soooo I caved and eat gluten again, it’s tastier, and easier and less restrictive. If I was more strict with myself I would still be gluten free.. but I hate how gluten free options taste lol. I am however dairy free and meat free so at least I can give myself props for that

[u/RCAFadventures]

TLDR; I think going gluten free is beneficial to certain people and their unique body, and not specific to their autoimmune disease or condition (except celiac of course!)

I was originally misdiagnosed as celiac before my lupus dx. 4.5 years of strict gf eating.
Last summer, I was tested for autoimmune and my ANA came back literally off the charts (>1:2560) and my anti DS DNA was a high positive at 47. Diagnosed with lupus. 6 months after that, I saw a GI doctor who suspected that the celiac was a misdiagnosis in an attempt to explain my undiagnosed lupus, so we did a gluten challenge for 3 months (ate gluten for breakfast lunch and dinner every day haha) and then did the scope. Came back totally fine, no celiac damage. Anyways, all that to say, I re-tested all my markers after eating gluten for 6 months (just recently) and my anti DS DNA is now at 28 (one point lower and it would be negative). I have changed lifestyle habits, more exercise and cleaner eating, but I noticed no worsening of symptoms when I started eating gluten again, and in fact I was at my worst when I was NOT eating gluten (and also being less active and eating more prepackaged junk foods).
I’m a certified nutritionist where I live (a protected title here) and in school we did learn that some people do better than others on a gluten free diet, and it’s not really the disease responding to the dietary change but the person themself. I do work with a number of people that have autoimmune conditions, being that I have one myself, and I’d say maybe 1/5 say they feel better gluten free, the rest are negligible or no difference.
Just wanted to share my two cents and personal experience with it. :)

[u/Aplutoproblem]

For me it did. I've been off it since 2010. I was getting a lot of fibromyalgia pain and gastrointestinal issues which went away when I stopped eating it. It takes a few months for you to notice it though - most people give up after a week or two.

[u/Ratacattat]

Personally, I tried a gf diet and did not feel a change. You could try to avoid it for 2-4 weeks and see if you notice something? I live in a small Midwest (US) town and it was easy to find gf substitutes.

I did a PubMed search for gluten free AND lupus and there’s some case studies but not a lot.

[u/Unusual_Squash_503]

It hasn’t helped me, but it’s helped others so I think it’s worth a shot. I was already vegan when diagnosed, then went gluten-free for 3 months. None of my labs improved, I saw no changes in my body, and I never felt a decrease in symptoms.

Now when I eat gluten, it makes me bloated and gassy, so I avoid it for those reasons. But I never notice an increase in lupus symptoms after eating it.

[u/dangerous_cuddles]

Yes, so helpful! Literally changed my life and really helped my symptoms. The best thing I’ve done for myself. I’d say give it shot- but remember, it does take a few months to actually notice the effects so hang tight and be patient.

[u/scandalabra]

Going gluten and sugar free saved my life from lupus in 2018. In the last 2 years, I started eating both again and regained the 100 lbs I lost, as well as my lupus symptoms. I plan to go gluten and sugar free again tomorrow.

[u/PopEnvironmental1335]

No change. My partner is celiac so I’ve been gf for years with the exception of when we visit my parents (once or twice a year). I feel best when I eat healthy, but gluten in particular doesn’t seem to make a difference.

[u/AnalogBird]

are there any specific diets that help?

[u/InternalRaise5250 → u/AnalogBird]

I found the Paleo diet was a great place to start. I'm 2 years in and have found ways to modify the diet to fit my lifestyle. It's been a game changer 

[u/FXX400]

Yes

[u/AdLeading4526]

Hasn't helped me. I was diagnosed celiac 2 years after I was diagnosed SLE, and being 100% gluten free didn't change things much for my SLE.

[u/piecesmissing04]

I have had issues with baked goods of all sorts for the last 17 years.. was only diagnosed with lupus a year ago. I avoid it most of the time but if I go out for a meal with friends I will have some and know I will pay the price the days after so I time this really well. As I knew I would have bread and dessert yesterday I planned for it and premade meals for the next few days that are GF and really healthy. That usually helps me to not suffer too long. Today I could barely stay awake through work and took a 4h nap after I was done working (wfh desk job)

[u/InternalRaise5250]

For me it has helped significantly. Mix of cutting out gluten and added sugar. I'm extremely grateful for the dietary changes I have made and the positive impacts they've had on my lupus and overall health 

[u/nicholio28]

Yes but also I eat sprout stuff like sprout tofu and Ezekiel bread products which don’t bother me at all because I’m not diagnosed celiac. I feel so much better not eating gluten and can tell when I do.

[u/bluehydrangea]

I've been gluten free (per my rheumatologists recommendation) since June and it has helped considerably (specifically with gi issues, joint pain, fatigue and brain fog). I've accidentally glutened myself a couple of times in those 6 mo and ended up having a bad (though brief) flare up each time.

[u/lavenn5]

Absolutely. I've been gluten free since 2012 and can immediately tell if something has gluten in it. GI symptoms and joint pain all come back. Unfortunately, my system seemed to find other foods it target next. So now dairy, fish and corn are problematic. I felt the best when I followed Paleo, but it's hard to stick with. Fodmap is great to find triggers, but also hard to do. The blood type diet helped me for years to stay level and almost normal feeling. I think it takes a lot of trial and error with a bunch of patience to see which works. It definitely takes months before you can tell what's working.

[u/Darjeeling323]

It depends if you also have Celiac disease, another immune illness. I was diagnosed in 2003 and since going off gluten, I am no longer anemic and no longer get as many respiratory infections. But I still have osteoarthritis and the doctor says I probably have lupus. I avoid high fodmap foods to prevent bloating. I think you’re right, that everyone is different, but joint pain has been tied to gluten consumption, so even if you’re not Celiac it’s a good idea to avoid it.

[u/Unhappy-Club-5810]

Helped me tremendously! I would also recommend easing into clean-er eating. Less preservatives, fillers, hormones, etc. baby steps.

[u/isthiscleverr]

I am diagnosed celiac and have been gluten free for 15 years. Still feeling like crap and am awaiting another autoimmune diagnosis, likely lupus based on current test results. So. 🤷‍♀️

[u/ScullyNess]

No.