There is a fair amount of anecdotal evidence, and books from "functional medicine" practitioners that claim that an autoimmune (so paleo and no dairy) diet and "fixing your gut" can reverse symptoms.
There are even some people like ChrisR on this forum who claim remission. My question is do you know other people who have over the years truly achieved remission with making these changes?
As a premed student I've been trained to only think in terms of peer reviewed journals and controlled studies, and to think of these functional medicine practitioners as exploitive quacks. However, one - I need hope, and two - I recognize that our general understanding of autoimmune diseases are very limited and so perhaps these changes (especially in seronegative people like chris) affect since underlying process that just is not able to be studied in a controlled study because of its variability.
Like you, I'm scientifically oriented. Anecdotally, there are people here, and reporting on other sites that have had improvement. I haven't seen reports that I would characterize as remission or a cure, but we'd need to discuss how we're going to define that.
Here's my thoughts: I find a lot of the practitioners who promise that you will be cured by their autoimmune diet as sincere but perhaps not as thorough about results as I would like.
However, there's no doubt that anecdotally, some people feel improvement with dietary changes. For some it's a paleo style approach, other gluten free, or dairy free, or the autoimmune diet. In some cases it's specific supplements. Others find benefit in meditation or spiritual activities. My thought is that these are worth a try, as they are relatively safe things to try compared to the very serious immunosuppressants some of us use.
I've tried gluten free twice for a six month stint each time. My rheumy suggested it. I kept food and symptom logs, and saw little difference in my energy, pain or diarrhea, which where the symptoms I was hoping to change.
I've tried a Low FODMAP diet and have determined that by avoiding certain foods, I can reduce how often I have chronic diarrhea. My gastroenterologist recommended it. Unfortunately, what I need to avoid are many fruits and high fiber foods - i.e. all those foods that are supposed to be so good for us! I continue to follow it, though.
I've tried many medicines, diets, supplements, and alternative approaches. I'm always comparing the tradeoffs - how likely is this to have serious side effects vs what benefits am I getting. We all find the paths that work best for us.
I don?t think remission is a logical outcome but some people do feel better when they take better care of themselves. As a med student you also have probably heard of the placebo effect...the mind can have surprising influence on health.
I did find that by focusing on clean foods and minimizing gluten,sugar and dairy my IBS has pretty much gone away. I take fish oil and vitamin D supplements and since I was seriously Vitamin D deficient I think getting those numbers up have helped my symptoms.
Am I ?cured? no...all my markers are still there. But I feel a lot better than I used to.
Interesting. There are people that claim they have no symptoms or are in remission with severely reduced sicca symptoms on the sjogren's Facebook groups. One woman reports completely no symptoms. I also looked into Helminthic therapy and one individual claims no symptoms at all after going on them except for occasional dry eyes, contacted him via phone and he did seem genuine.
I want to believe but the skeptic in me holds me back. But I need the hope because 1. It lets me be productive 2. It may work (for me) who knows. The immune system is already very individualized so it's worth a shot.
I suppose I should stop digging, it's against my nature but perhaps even if these treatments become just a placebo effect, that may be to my advantage after all.
I'm interested in who is in a remission as well. Even if it is a placebo/mind effect then that's something right? If the brain has that much of an impact on how we experience pain and discomfort then maybe we should try exploring some psychology instead of meds....just a thought. Im certainly curious.
I've joked many times with my rheumy that I would be perfectly happy with feeling better via a placebo. :)
I have noticed some improvement when I avoid gluten, eat well and take all my vitamins regularly. Come to find out there is an article on Pub Med indicating that coq10 helps prevent dryness. When I say "vitamins," this would include coq10. I definately have less dryness issues than many other folks with this illness. I think it somehow all works together, but can t say in what exact ways.
One of the more astonishing things for me is that I have low platelets and frequent testing has allowed me to see how diet influences my test results. sometimes I get a blood count weekly and even sometimes twice a week. So, although still not truly scientific, it has given me the opportunity to see changes in my blood work when eating in a healthy manner vs when I'm not. My counts stink and I'm often on the precipice of needing treatment. When I eat in a healthy manner and avoid gluten, I can almost always count on my platelets going up by 10k or so and less fatigue. This keeps me away from treatment. Of course, I'm human and mess up. Sure enough, I'll get an alarming count and my doctor threatens to send me to the hospital for a mega ivig treatment. I tell her to give me a few days. I'll juice kale and so forth, come back and my count is up by 20k. The staff thinks I took prednisone. Nope.
For me eating gluten is a poison that results in burning feet and legs within 12 hours - even just a contaminated pizza cutter. I do not have the antibodies, but neither does my mom and she is very seriously gluten intolerant. Therefore I avoid gluten like the plague. Is it a cure? No I still am dealing with autoimmune issues at times (like now) and when it happens I try to be introspective and go over what I have eaten because that will flare me.
It makes sense to avoid those foods we react to so we cut down the allergenic or reaction of our body the substance. Healing true autoimmune issues usually isn't as easy as that or many of us would be cured. I have an MS friend who is eating paleo for a bit and although it has helped her weight she still has MS and always will despite what she chooses to eat. It sure can't hurt us to eat well, don't smoke. limit alcohol, stress and get 9 hours of sleep as well as exercise, but it won't heal it all.
I do have a friend who had polymyositis for a few years after her 4th child was born. She was living a super stress filled life and taking care of the 4 kids all week by herself while her husband worked out of town. She smoked, stayed up late doing work and just lived a stress filled life. Finally they sold their house and she moved so her husband could be home each week to help with the kids. Her rheumy just kept telling her she had to find balance. She quit smoking, started cleaning up her diet, went to college and the kids got older and her polymyositis burned out and has never returned. Did the life change help? Sure, but as the rheumy said sometimes in rare cases autoimmune stops and we aren't sure why. Wishing everyone a good day with clean living to help us feel as good as we can.
i absolutely agree about what our mind can do on our body. we can have the experience every day, our emotions make beat our heart faster, change our pressure, move our colon and also dry our mouth and many other simple and usual things.think of people who lose their hair for a shock or their hair becomes white or straight. stress is the worst, may be worse than bad food, for me at least.
In general, I have found that specific symptoms may be controlled or greatly improved
by diet or allergen-avoidance, but I have not achieved remission of the underlying AI illness with these.
I suggest googling "Coimbra Protocol" (or just do a search on this site for my post on it).
Created originally by a renowned neurologist for MS, he now uses it for all AI issues and claims high rates of success (complete remission) backed up by MRI's of disappearing lesions in the brains of MS patients, among other things. This is the closest I've found to an unconventional "cure" treatment actually backed up by some legitamite studies. I'd be interested in hearing your opinion on it.
To get the gist of it you can watch this video, a presentation from Dr Cicero prepared for representatives at the House Chamber, in Brasilia. Turn on translation:
https://www.youtube.com/watch?v=soKM6z1cdiM
The film ?Vitamin D ? For an alternative therapy?, produced between 2011 and 2012, tells the story of 6 patients with auto immune disorders that have had their lives transformed by this same treatment:
https://www.youtube.com/watch?v=erAgu1XcY-U
vit D, thats great, ive seen the video. but what i do not understand is this. at a certain moment the doctor says that u get 10000 units of vit D just staying in the sun. its amazing that this happens in Brazil where they have a lot of sun! so why not just stay in the sun for one hour every day? i speak for brazilians or the californians or the italians like me?? i stay for months in the sun for hours, not one hour but may be six hours but my vit D level was low anyway and i met many people with rheumatoid arthritis even if they live near the sunny sea that we have!! sorry to be so skeptical. i noticed improvement in fatigue taking vit D but nothing more, and im staying in the sun for months
While I too am skeptical I applaud all those who are making changes in diet and lifestyle and feel better because making those changes is not easy. I am not a doc and don't know how remission would be defined for SjS so can't speak to that.
I stopped eating gluten and dairy about 3-4 years ago, reduced sugar intake, etc. Before doing so many of my vitamin levels were low and I vowed to get them up by eating well (a goal which I achieved). My rhuemy says my SjS is "under control" and that my bigger issue is osteoarthritis.
I have other issues such as leukopenia which food does not impact. I find that stress is a bigger issue as is the type of heat we've had of late.
Blue- The answer to your question is that according to the Protocol people with AI issues have Vit. D absorbtion and metabolizing issues, which means they may cannot benefit from the vit. D they are getting. That's why the Protocol advocates taking specific vitamins to increase absorbtion (such as B2 and magnesium) alongside high doses of Vit. D to compensate for this issue. They also try to get your PTH level on the lower side of normal for this very reason. From what I understand they have Coimbra Protocol educated doctors in Italy but not in my country.
I think diet, nutritional problems, metabolic problems and food allergies have a lot to do with some of us, perhaps not all. I am seronegative. I got a lot of relief by going gluten free and cutting nightshades out of my diet. Sticking to a completely gluten free diet is hard for me but I seem to have a threshold. I also found taking a supplement that my eye doctor recommended helps. It seems to take a lot of different approaches and medicines/supplements to feel ok. However, no cure yet for me. I've been dealing with this for many years now.
For what it is worth (I am a retired registered nurse who researches a lot) I take a lot of these unusual treatments with a grain of salt. First of all, I doubt that I would be in a hurry to try some of the things that comes out (helminths for one thing).
The other thing is that in light of the fact that the medical community is still learning as they go along, they are also very leary of trying anything out of the tried and true methods of treatment. Also, the big variable is that we are all different and meds and other treatments work different on all of us. Generally the thought is that inflammation is the big culprit but I am still waiting for them to come up with one specific issue that is the cause of all autoimmune diseases.
I don't know what to tell you cause I know that you want to feel better so you can pursue life. Maybe it would help to see a doctor of DO as they tend to work more with the natural treatments, etc. They also have the advantage of knowing the regular medicine so they are less apt to pick treatments that are iffy. Even if you could feel a certain percentage better it would help considerably better that staying at the same level of misery. Good luck and keep us updated on things that you find help. Irish
They're is no one specific cause of autoimmunity ; it is a combination of genetic factors and environmental triggers that causes your immunity to lose tolerance.
We don't understand the mechanisms at a molecular standpoint, and there are very likely to be multiple pathways that trigger loss of tolerance. Once we understand the molecular pathways we could create better drugs and possibly cures.
By the way, a cure for sjogren's (that won't reverse damage done) already exists. But don't expect any physician to allow you to do it as it is beyond risky (threat to life and organ damage). It involves depleting your entire immune system through chemotherapy and replacing with when cells. It's been used for very serious manifestations of other autoimmune diseases like MS. In theory it will work for any AI disorder.
I agree 100% with Irish.
AND if there were any treatment, diet, activity, that put any autoimmune condition into remission, there would be basic researchers at NIH all over it.
Google your treatment, diet, activity and add pubmed to the search term. That will show immediately if there is any research being done into the treatment, diet, activity.
There is research on helminth treatment at NIH for example, and on the use of the herbal medicine cistanche.
Check things out, draw your own conclusions. Check with Sjogren's Syndrome Foundation as well as other Sjogren's organizations that fund research and advocate for us.
No one will keep good research and successful modalities from us.
Regards, Elaine
As my rheumatologist put it so well - "If we had a cure or a method to put this disease into remission, I would have no reason to hide it from you. You would be the second person to know about it. " HE would presumably be the first.
Thought I would add to this thread. I cheated on my diet yesterday, big time, ate a bit of dairy, gluten, and sugar (fair food). Now it may be that it was very hot too (though I did hydrate like crazy), but I have been in extraordinary pain today. For me confirmation that diet does matter.
Whenever I "cheat" on my diet even a little and add the smallest bit of gluten, dairy, sugar or even potato I pay dearly for it with increased inflammation just as SjoGirl has mentioned.
I get strong joint pain, gastro symptoms, my eyes become red and burn, fatigue hits, etc.
So I would say diet doesn't "cure" but it may help get the inflammation under some more control.
Same is true for environment- it can make symptoms worse or somewhat more tolerable.
I think that I was in remission for about a year. I started Plaquenil and went gluten free at the same time. It took about nine months and then I went into remission (IMO). I believe that both helped in different ways. I definitely have a gluten intolerance because I get dysmennorhea when I consume gluten, and that has almost completely resolved.
However, my remission was not sustained. Why? Well, the immune system is a powerful things, as are our genetic predispositions. Epigenetics is fascinating and I do believe that we can turn our "switches" on and off by environmental forces, but that is also a very young area of science. However, it does make sense that diet would be an important part of that puzzle, although the specifics will probably take several more decades to understand.
At the time when I was doing so well, I also had very little stress in my life. Once I went back to grad school to become a teacher my flares returned. Now that I am teaching all bets are off and I hope to just be able to maintain until I can achieve a better work life balance.
In the end I think that progression, flares, remission are very complex and will vary for everyone, but that there are helpful things that may make a significant difference in disease progression for some.
That's interesting Nymph.
I've heard other stories of remission that involved de-stressing as well.
The question is how to maintain the de-stressing for the long term.
I'm wondering if antidepressants which moderate mood or some other meds may aid with this.
ive noticed how stress and depression affect my symptoms and im trying meditation and other such as accupuncture and pranotherapy.for me it works and i will not try other meds. strangely in these days my dryness is better and i did not change anything but my mental attitude. but i dont want to have any illusion....