Firstly, I'm not saying anyone should be using anything other than there meds. I just wanted to share this because (as a researcher) I can't help myself. I just have to research everything to death.
So, I discovered research by a specialist called Gregg Silverman in the States. He's discovered a link between gut microbiome dysbiosis (lack of bacterial diversity) and Lupus. When disease happens the dybiosis and the lupus are then self fulfilling prophecies keeping one another going.
Out of interest (i'd not been on any meds) I took a microbiome test (I have a pretty healthy diet loads of fruit and veg and insoluable fibre) so presumed it wouldn't show anything.
What actually happened was it was so bad the report said 'you should see a doctor.'
I then spoke to a BANT registered nutritionist who told me something very interesting. It isn't the quantity of fruit and veg you eat each week that maintains a good gut bacterial balance but the diversity and they recommend people who eat at least 30 different types of plant food each week have the healthiest guts. Nothing needs to be consumed in huge quantities she said, just a little of many different things...
I am now on a programme from her to see if I can improve my gut microbiome in the next 12 weeks. I'm making myself a human experiment and don't take any meds.
For HCQ users (I can't use it) the really good news is that researchers have discovered people who take HCQ see an improvement in the gut microbiome within three or four months or starting use. Adding a particular herb in (can't remember will find out if anyone's interested) made this effect even better.
Silverman's research is ground breaking and the nutritionist explained to me that it is the break down of the mucous on the gut wall that lines it that seems to be a big issue.
She also told me that you can take all the probiotics in the world but if you have an overgrowth of harmful bacteria there is no room for the new ones to grow. The anaology she used was the garden needs weeding before you sow new seeds. I won't tell you what she's given me to 'weed the garden' because it was personal to my case.
I am sharing this because it's worth at least reading Gregg Silverman's research and drawing your own conclusions from it. In the science they are now starting to think very specific probiotics (you can't just take any old probiotic they are not all the same I was taking one that didn't include the two bacteria I really needed most) maybe first line treatment for a range of skin and autoimmune conditions in future years.
So, end of me waffling. Gregg Silverman is the researcher to google if you want to....
If anyone is interested, I will happily report back here what happens to me in 12 weeks from now when I will do another microbiome test to see if it's made any difference....
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sunrise
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Very interesting! It may be coincidence, however, I have been in a massive IBS flare up since last October which was about a month to six weeks after having to stop taking hydroxychloroquine which I'd been taking for over 8 years. GP has just said it's an IBS flare as usual tests all negative. Can I ask where and how you had your gut dysbiosis checked and diagnosed? I'm waiting to see a gastro specialist but who knows how long that may take.
The opposite thing of what the research is advising really - but you tried eliminating all fodmaps from your diet I wonder? It is the most horribly restrictive and unwholesome diet - and I’m only on it because I developed Gastroparesis as part of my MCTD/SS and also take a prokenetic and nutritional suppliment drink. But I seem to have totally eliminated the awful abdominal pain and am no longer vomiting. If I break it with even a small amount of salad or fibre, onion, garlic then I pay in hellish burning.
But after a year, I can now eat banana, fresh ginger, peeled pear, mango and some non fibrous veg liquidised in a morning smoothie and tiny amounts of fresh herbs in non fodmap containing soups and small amounts of white rice with sauces with roasted root veg and fish.
To be gut pain free at last is all I care about presently - but there’s an American rheumatologist who gave a webinar for SRUK and she has excellent advice about nutrients we can add to help our gut biome once we get the gut inflammation under better control. I’ll see if I can find a link. I’d like to get my CRP down and my low albumin up from a blood work perspective but newly diagnosed with lichen sclerosus which has been flaring badly despite very immunesuppressed. Maybe this is why my inflammation levels are still too high. I couldn’t tolerate HCQ either.
Low fodmap is the only diet I can take but I’d love to test my gut microbiome too and get advice on what fruit and veg I can safely reintroduce and how.
Thanks for your reply and it looks like you've made some good progress with getting things under control. I haven't tried low fodmaps yet but I think I will have to go down that route - my rheumatologist did suggest it to me as I've had trouble with IBS for years off and on. My upper GI tract flares up at times too but as one thing settles, another seems to flare up.
My current flare was triggered by accidentally eating gluten (my daughter is coeliac but I'm technically not but cannot eat it) which led to ibs-c .... I seem to get problems with muscles in the gut - dysautonomic dysfunction according to my doctor - things have largely settled but has left me with residual ongoing lower abdominal pain ... often associated with trapped wind. This has been very typical of my lupus/Sjögrens pattern over the years .... pain continues after the original stimulus has gone.
I am going to try low Fodmap and am having a fast day today to see if that will help. I'm not on any meds now as stopped the HCQ as the OCT scan revealed a hole in my macula area and stopped low dose aspirin in case that was aggravating reflux. We can't win can we!
I'd be interested to hear what you find out if you do manage to get your microbiome tested.
You’re welcome 😊. Dr Elizabeth Volkmann is the American rheumatologist who helped me realise that I might be a bit more experimental now with reintroducing healthier, nicer foods to my restrictive diet.
Dietetics here only interested in my weight not in what goes in or out I’ve found so guessing I would have to pay to get gut tested. You probably have SIBO? Definitely worth cutting out fodmaps but it’s very hard eg onion powder seems to be in so many things and other stuff I pay for horribly later - even olive oil often comes with added dry herbs which make me burp uncontrollably.
My partner has same issues with gluten sensitivity as you but strangely I don’t seem to although mostly avoid it anyway.
Thank you - I will check out what she has to say 😀. I will probably have to pay to see someone - the NHS cannot even tell me when I might be given an appointment date for the gastroenterologist and I was referred at the beginning of March.
Well I was discharged by gastro many times so it was my rheumatologist who got me urgently sent for tests last year - 13 months ago. They showed very poor transit throughout my gut so now under colorectal waiting for something called a proctogram. I made complaint about a nasty experience of gastro scope in March and it was upheld. Now find that despite numerous referrals internally from my other consultants I was only put on clinic list in March. Secretary told me I’m down as urgent but that’s 40 weeks! So should be seen by gastro in December - 20 months the gastro bounced me to dietetics for soft/liquid low fodmap diet. I filed another complaint cos scleroderma and SS aren’t for messing with. 🙄
The other specialisms don't really know how to deal with us in my experience - I had to explain Sjögrens to an ENT consultant I paid to see last year. I have a good rheumatologist (Sjögrens specialist Dr Price) but she cannot always help with some of these ongoing symptoms that blight our lives.
There is someone else here who sees this dr price here. They too have terrible gut problems - will see if they maybe pick up but I think these are common with SS? Your Dr gives lots of webinars on the SRUK too so I am guessing she will know Dr Volkmann - both Elizabeths on SRUK!
I think I know the person you are thinking of as I know she too has a scleroderma/Sjögrens crossover. I don't have scleroderma myself ... I've travelled through diagnoses of Stills Disease, lupus, aps and now Sjögrens.
No this person has same combination as yourself ie lupus with SS. But I believe SS can cause Gastroparesis and other transit issues all by itself without any help from the other similar menaces. Wonder if it’s all neurological and dryness but my colorectal man says it’s also vasculitic with SS because we are very prone. This makes most sense to me because of my high inflammation and immunology but guess scarring, loss of elasticity and wear and tear all factor in as well.
I don’t know about calling it IBS with sjogren’s as IBS is a bit non specific and suggests stress, basically functioning or whatever. Vagus nerve damage is similar in scleroderma, SS, vasculitis and lupus as in MS. It’s all damage whether sclerotic, neuropathic, vasculitic or EDS related or other eg Parkinson’s. IBS way too vague and gets gastro’s out of taking us seriously.
These stories are heart-breaking. Is it that there are so few gastroenterologists in some areas that they only see the emergency patients, the IBD and cancer patients? Another woman had a similar story. Getting a patient fast to the dietician seems good but we need understanding from an expert with a disease like you have. Even if there is no fast solution, we need the hand-holding of doctors.
Stay with us for support. We need each other. Do you know @Barnclown ? She knows tons about autoimmune guy issues.
Ps neurologist has come up trumps with a successful request for me to get IViG for autoimmune GI dysmotility. She says this is experimental to prevent more SS nerve damage in gut but not sure how she will measure if no gastro input?
Anyway if not SS as no improvement from IViG - then we will assume it’s fibrotic damage from Scleroderma she explained. So 🌟 neurologist and 👎🏻Gastroenterology.
@sunrise ‘s post is sparking a lot of interest. There are many of us with GI issues. I, too, am told my problems are likely related to the autonomic dysfunction.
Can I ask if you have other symptoms of dysautonomia? I started taking adderal and it seems to be helping.
Check out HeatherhelpIBS. She does not pretend to be a doctor. Using acacia fiber and doing what Heather advised made me feel like I had a gut transplant. My GI doctor said it made perfect sense when I told her the story. My gut has not been the same since back to back colonoscopies. Maybe I will call Heather. 😂
Potentially .... I get weird racing heartbeat episodes and funnily enough have a 3 day heart monitor attached over this weekend. Of course I've not had any of my really weird palpitations so far .... typical! I also have some signs of hypermobility - double jointed and problems with my elbows and shoulders going out of joint (Just got used to twisting them back). Doesn't happen so much since hitting middle age.
Thanks for the suggestions - I will check out HeatherhelpIBS - is that a website or on here .... I will Google.
It is actually helpforibs.com. Sorry. Probably not a good idea to dramatically change your diet before seeing GI doctor. But I don’t think Heather’s method has anything that worrisome. It makes sense actually. As my GI doctor said, cooking vegetables and fruit and discarding skin makes everything easier to digest. Fiber is good for us. Do exactly what she says, though. Start with a tiny bit. Doctors don’t tell their patients this and people give up.
Just a gentle flag here - fibre is of course very good for most people but can be a disaster for those with IBS - which is why fibrous foods are seen as high fodmap.
This is site to research since Monash uni was the university that researched and created the low fodmap diet. monashfodmap.com/ibs-centra...
Yes, I thought about qualifying that after I wrote. That is why the skins are peeled and vegetables cooked. Insoluble fibre gave me trouble for years and I didn’t know it. The acacia fiber is soluble fiber. Some may have to be careful with that too.
Glad that you’re not annoyed and understand what I meant - don’t like criticising anyone but it was a high fibre diet that almost polished me off 2020-21 so felt I must say something! X
Not at all! In fact, I am glad you caught that because I would not want someone to go and eat a lot of “healthy” granola (I made that mistake once) and end up in trouble.
I am not sure anyone with GI issues whatever the cause does well with a lot of insoluble fiber, right?
I understood what your rheumatologist was saying about needing the evidence for getting IVIG. I went through a bit of that after Covid when autonomic issues got bad. The neurologist was doing those weird neuro antibody test and then thinking rheumatologist could help. In the US our insurance companies can be tough with IVIG. I got better and didn’t need it. But after I qualify again for plasma donation, I am donating for people like you who need it. If they would get more people to donate plasm, would it get cheaper? I think people just do not realize the contribution they could be making to those with immune deficiency and autoimmune disease.
Hope you get that IVIG. It really turns some people like you around.
Thanks so much K. I’m sure you’re right about insoluble fibre - I just wish someone medical had pointed me in the right direction many years ago in that regard! I did do all the “diets” ie Atkins, the one with carbs and 4 hour gap to protein (Hay?) and non dairy, blood type, gluten free, Paleo, 2-5, elimination (for my allergies) and then AIP several times over the past 30 years. All made either no difference or made me ill. Worst was colorectal advising me in late 2020 to eat high fibre. He didn’t qualify soluble fibre and I was already on senakot and Linzess so really not good!!! He felt really bad when he found out I had severe gastroparesis! I don’t think I’ve ever known such pain or vomiting even on a par with one time acute pancreatitis!
I’m not sure I’ll benefit much now from IViG - time long past I would think and I’m finding prokenetic 2-3 times daily life changing for relieving me of abdominal pain. But my neuro assures me that if it doesn’t seem to help then we can assume it’s fibrotic changes not neuropathic ones so I trust she knows how to measure this. Like you my guts feel kind of used to the new status quo and I’m resigned to no more yummy granola or homemade chickpea flour bread or roasted kale. Onion and garlic powder has always given me terrible wind but onions and cheese and tomatoes, broccoli, beans, asparagus and many fruits with skins eg grapes, berries etc I miss so much.
Would the test of IViG be to try a nice “healthy” meal a few weeks after I wonder or start to reintroduce the moderately high fodmap veggies one at a time perhaps and then ask for another gastric emptying after my first few courses? . If I don’t have horrible reaction to IViG of course. I’m a little bit prone! X
The advantage to IVIG is that it actually regenerates nerves. That is probably why your doctor wants to get you on it. The Mayo Clinic is doing a lot on this problem in the US and with some success.
I would go for it if offered! People do okay having to be on it long-term. Ask for feedback here in the forum.
Doctors aren’t that well-versed in the dietary stuff. You sound severely affected and deserve a trial of IVIG.
The pathophysiology the doctors know well. So stick with the one who is trying to help you.
Thanks I plan to. She and my rheumatologist put in a special named patient request for this IViG after I went to see my neuro for review. I thought this would fail because I don’t tick many boxes for autonomic neuropathy at all - just a benign cyanosis that is orthostatic along with Erythromelalgia and glove stocking loss of sensation and some orthostatic intolerance - but not POTS.
I suspect it’s because my overlap MCTD shows high immunoglobulins and I have only an antibody for scleroderma that makes Myositis quite a likely future contender and have symptoms that fit already and some small pointers to CNS Sjögren’s.
Maybe the pharmaceuticals committee has an immunologist on it and I know my neurologist gave them the available evidence and clinical trials so far mostly US led, on IViG for AIGID.
Re availability - this is what an article in BMJ explained to me once: it’s been almost impossible to get IViG here in U.K for years due to an EU trade agreement with US that a large proportion plasma supplies came to your country in return for other medical trade offs. But now with Brexit there’s been one unusually positive spin off for a rare group of patients and we get to keep our own home harvested plasma. I’m sure not enough people donating blood is also an issue same as it is everywhere - but this may be another reason why my two consultants decided to put forward my case now I think. X
Wow - lots of issues. Hard to get in the US too. But you have so many autoimmune features that correlate with gastroparesis that I think you would get it.
Your consultants must think there is evidence that it will work in your particular case or they would not even try. I am crossing all digits for you as I know your doctors are.
Thanks yes I'm diagnosed by tests with severe slow transit issues throughout. They don't yet know if this is sjogren;s or sceroderma relating so my neuro hopes that IViG will clarify as scleroderma damage isn't so much nerve fibres as it is fibrotic and vascular. She seemed to think it an experiment worth applying for and her request has been sucessful so that is great news. Mind you I learnt today I"m down for an urgent vulval biopsy of an ulceration and inflammed scarring - which they want me to prioritise over IViG if that's the soonest date they can fit me in. My dermatologist wants vulval cancer, lichen sclerosis and Behcet's all excluding which is a bit scary! x
Oh my, you have a lot to deal with. You have good doctors and they are trying to get the most effective and advanced treatment for you.
I totally understand what you are talking about that they can’t know the exact type of damage. My GI doctor, who was recommending the smart pill for me, has decided against it. She said it won’t really tell her the pathophysiology. You can’t even tell IBS from damage from autonomic dysfunction. She was willing to back up neurologist for IVIG, though. I got better a few months after Covid and didn’t even need it, though.
I would recommend anyone gets a test. You can follow diets and advise but it needs to be specific to what is going on with your gut. As I posted above, I already ate a lot of fruit and veg but the diversity of wasn't there. I also now discover that despite using a very good quality kefir and probiotic - the two very specific probiotics that I personally need weren't in either - I've been given very precise advise that meets my personal needs and will be reviewed in three months to see what's happening. Worth getting tested....
What I've really taken away from my test results and discussion afterwards is that you can think you're eating healthily but if you're not getting the very specific probiotics you personally need and eating a diverse range of foods to feed all the 'good' bacteria you can be really not as well as you think you are (gut-wise). I already had 8 fresh foods a day but because I tend to always eat the same ones (specific veggies and fruits I know I like) i wasn't getting the diversity. Stress has probably also played a huge role for me, I've found the last two years as a health care professional very very stressful so where I have almost certainly from blood tests had lupus for at least 7 years no one realised until I was pushed into a massive flare....
Atlas Labs are the place to get the test (that's who I used anyway)...
Thanks. I’ll save the name Atlas Labs. Personally speaking I’m on a nutritional supplement daily but found it’s instead of eating so as I have been able to eat more (very restrictive still) I’ve been having quarter of my intake of Ensure Plus drinks - which is heavily fortified. I definitely couldn’t vary my diet much at first because I’m almost stomach pain free just now. But I do feel that not drinking more of the suppliment is meaning my micro biome will be poor so it would be great to get this checked out.
As others here have said Prof Tim Spector has been doing a large scale study here in U.K on the gut microbiome - so I’ve been following his work with interest - especially as he originally trained as a rheumatologist!
Thanks so much . The only problem I have with this is acute fund shortage and also what would I do with the results given I’m under nhs dietetics and terrified of rocking the boat with introducing new foods and getting rid of the few existing ones eg rice cakes and low fat yoghurt. I think I’ll wait until my next dietician appointment and see what she has to say as so far it’s just a matter of “keep to your non diet of shakes with a banana and served miso soups. X
I used a UK based lab called Atlas.. You send off a sample and get a very big report about 6 weeks later including the levels of each different type of bacteria and advise on what to do to rebalance things plus a 30 minute free consult with a nutritionist...
Yes, very interested! I just realized I never got my bacterial overgrowth test. After reading your post, I know I should schedule this.
That is important news that it is a variety of fruits and vegetables that matter, not the quantity. A lot of us cannot tolerate too many fruits and vegetables, particularly raw, so this would be encouraging. It is a change in thinking, right? So some a small amount of cucumbers without the skin, a hand-full of cherry tomatoes, a mixture of poached pears and apples … we’re on the way. Love this!
Many thanks for posting this. There's so much conflicting advice on gut microbiome and of course major sales patter from the probiotics industry!
Tim Spector at Zoe seems to be a sensible chap too, who also advises variety instead of quantity. He also makes the point about colour variety being important in the foods we eat.
I shall research Gregg Silverman, thanks for the tip. I really hope you see some positive benefits.
I'd ignore the sales patter. check Dr Martindale on Youtube who's a gastroent specialist talking about this. I'd also read the primary source research - not everyone else's analysis of it.....
Thank you so much for this sunrise , I am a strong believer that a healthy gut will maintain a healthy body. Processed foods, takeaways are the reason behind so many illnesses and medical conditions specially gut related conditions. I make sure I eat home cooked food daily and I’m trying to introduce more plant based foods and avoid meat/chicken if I can. Do keep us posted on your progress 👍🏻
Hi. Thankyou for sharing. This is very interesting. I too have an inquisitive mind regarding science and research and would be very interested to hear your progress. Ever since I was diagnosed with Lupus and RA and Myositis last year my gut had never been the same. I too am intolerant to HCQ.
Very interesting - I have reached the stage that gut health has to be my new priority. I would be interested if you could find out the herb to go with HQC. Be very interested in your experiment. Off to think of 30 different fruit and veg that I can actually eat.
Hello, I'm going to sit down tomorrow morning and prepare a list of all the primary source research I have that others can read and I will find the one with that herb in it too...
Advise I was given is we need to aim for at least 30 different types of plant based food each week. Don't need to eat much of anything its diversity that counts - that was from a BANT registered nutritionist. SO if you make a chilli - stick three types of bean in it not just one. Eat a different type of nut each day etc etc....
Thanks for posting this. Very interesting. I too would like to know where you got your gut health checked and I would also appreciate it if you could share the name of your nutritionist. Many thanks!🌸
Yes. I agree. A variety of fruit and vegetables are needed. I also eat kimchi and sauerkraut. I am with Professor Tim Spector's Zoe Health Study involving blood glucose levels and gut microbiome.
Wow, just read all these comments this morning. I promise you all I will compile a list of the primary source research I have and post it up here tomorrow. I don't read opinions or other people's analysis but always got to the primary source.
The laboratory that did the gut microbiome test is Atlas Labs in the UK.
I did the test through a third party company, chuckling goat, makers of goat kefir. I had been drinking it for over a year when I did the test but ,as the test showed, while it had corrected some of my microbiome there is a lot of damage there and the nutritionist pointed out you have to 'weed the garden' and get rid of the bad stuff that's running riot in order to then start planting the healthy stuff. I was advised both Thyme Tincture or Ashwatanga are shown to dampen down the Ecoli and one of the other bad guys running wild in my gut. That was specific advise to me but I have read up on the thyme in particular and it does seem to be widely used to correct the microbiome...
I promise I'll post up all the interesting primary sources I have later or tomorrow morning. All the best, Sunrise
It is interesting that you can tolerate Ashwatanga which is immune boosting. I cannot tolerate anything that boost immune system...I am taking mild immune suppressant presently but this has always been the case with me even before being put on biologic therapy. I have always felt worse if I took any alternative remedy. I have tried gut healing for 8 months going gluten free and taking all the supplements given to me by a naturopath...Now I have gone 99% vegan and eating loads pulses and different things. Lots of homework! What fun! 😂. I will look forward to reading your post and thank you very much for the info. All the best
It's interesting isn't it regarding the immune boosting bit. I asked a medical herbalist about that and he told me that immune boosting won't necessarily boost auto-immune. rather than trying to shut down immune system, naturopathy works to heal the broken system. The ashwatanga is known to be anti-microbial and so clear out the bad gut bacteria.... I've been on it a few days now and certainly not seen any increase in lupus symptoms. What i have noticed, in reducing all my sugar consumption to almost nothing, is a weird muzzy sort of feeling that a doctor of naturopathy told me a natural response to the sugar drop and should pass.... we'll see!
Thanks for getting back to me on this. You mentioned that you are not taking any medication for your lupus condition and I am guessing that's because it is mild or not in advanced stage. So perhaps you have far more potentials for recovery and less adverse effect with alternative herbal therapy. I have tried herbal medicine (prescribed by herbalist) also, other Ayurvedic and Korean (red ginseng) and my condition got worse within two days or so. I have asked doctors if it is possible to try to restore the immune condition by normalising rather than suppressing and making daily life harder and dangerous with lower immune system...by to no avail. Sigh...I did try no sweet diet for months...didn't change much but I don't indulge at all as I hate sweet things naturally. The only sweets I may consume are natural ones from fruit, a bit of honey and some dry fruit from time to time. Going vegetarian over a year has not reversed my condition either. Please update with me with your progress as I am genuinely curious what works. Life is full of constant curve balls! 😅😉
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