Gut bacteria linked to lupus: https://www.lupusre... - LUPUS UK

LUPUS UK

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Gut bacteria linked to lupus: lupusresearch.org/bacteria-...

Sue_petal
Sue_petal

Hi All,

This should be of interest to lupus sufferers.

Xx

28 Replies
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I suspect that if they did similar studies in most a/i rheumatological disorders they'd find a common theme! Just think - a probiotic capsule to cure us!!!!

Sue_petal
Sue_petal in reply to PMRpro

Yes, a very good idea.👍

Hopefully in the future we won’t need all these powerful immunosuppressant drugs eg MMF plus the rest plus debilitating side effects more usually prescribed for transplant patients.

I would personally look forward to natural “cures” and treatments. As a vegetarian probiotics are a welcome alternative.

Regards

Sue_petal
Sue_petal in reply to Sue_petal

Probiotics?🤔

A useful health guide:

healthline.com/nutrition/pr...

hmm interesting. I started off with colitis which also has gut bacteria involvement

Thank you for posting this. A fascinating study x

Hum interesting. I am convinced my first signal that something was going amiss was when I started to react bady to garlic and anything from the allium family. I read about 'leaky guts' then. Four years after this started I was diagnosed with inflammatory arthritis, sicca, UCTD and ??? it's still evolving. Interestinly on the Johns Hopkins site is says to avoid garlic - it's all so complexly interlinked. Thanks for posting - it all makes such sense really. x

Hello all. Here’s a my background to my story. Born in the Uk, but lived abroad in hot countries as my dad was a civil engineer - returned to uk and started nursing. Stared to have issues with tiredness joint pains and tummy issues and depression oooh and allergies lots of them! Went to GP heaps of times, bloods taken loads of times to check thyroid and rheumatoid factor, allergies etc but not conclusive buy given meds for IBS - which by the way I don’t have. Move on until I was 49 and heat weave hits Aberdeen so I go out in the sun and sunbath and a mad rash appears on my chest which does not go away! Very strange as I lived in the sun prior. Anyway GP tried antibiotics and creams and eventually get emergency appointment with Dermatology and then and there get diagnosed with ...... yes you guessed it Lupus! Skin samples taken and bloods. Sent to Rh too. Going along in the background was my tummy issues. Stopped gluten and hay ho things got better. Referred to Gastro - told I prop had coeliac disease, would need endoscopy but no gluten was consumed, joint pains and tum started to improve. Also doing the sun protection. Read an amazing book about rebooting your auto immune system. I now still don’t do sun, gluten, soya, and a few other things and try as much as I can organic, a diet rich in raw foods. And have a very very good life. I do break the rules and I pay for it with joint pain, bowel issues and then feel like an old lady but if I follow the rules I am feeling well, pain controlled and no bowel or skin issues! THATS MY MOTIVATION! So I do feel there is a link.

TillyO
TillyO in reply to No2Sunshine

Wow I’ve been living in the sun for years too and similar happening to me. Hospitalised with rash migraine etc thought it was covid ..Diagnosed with lupus but bad gastritis and joint pain And anxiety issues ... I’m also dealing with sharp ear pain ... endoscope etc done I have folds in esophagus and few polops which I’m waiting of biopsy results. I’m going to try gluten And soya free. What other foods do you avoid? Do you take anything for probiotics?

Thanks for the info

No2Sunshine
No2Sunshine in reply to TillyO

I try as much as possible to stay clear of tablets. I try to eat the right foods to give me them. But occasionally I have taken if feeling run down etc. I have vit D and take that especially in winter months. I have reduced the inflammatory foods like tomatoes (which I just love) to 30g portions (3 baby tomatoes!!🙁) onions and varies other foods that can cause inflammation in joints and gut. Sometimes it’s trial and error. Sugar is especially bad and corn of course. In fact anything that has corn in either as a food or oil etc I find my inflammation is worse. I of course eat crap but I will pay the price in pain and lots of sore tums!!!😂. The book I got is called “THE LUPUS RECOVERY DIET -A Natural Approach to Autoimmune Disease by Jill Harrington.

She had SLE And it’s her journey. And in the book is others people’s story with different diseases. It’s interesting even if you don’t follow her diet plan.

I must admit I did follow it but it was too strict but I did feel the benefit at the time. Maybe I will have a re-read and do it again.

TillyO
TillyO in reply to No2Sunshine

Can you tell me what book you read too please? Do you take any medication or vitamins ?

Thanks again

No2Sunshine
No2Sunshine in reply to TillyO

Calcium, Vit D And anti-inflamatories were all prescribed but stopped them and just upped the calcium intake. Take vit D but most people should anyway unless you live in the sun but us Luparians ( just made that one up🤣🤣🤣🤣) should not be in the sun. The antiinflamtories def help with pain but they have side effects too.

TillyO
TillyO in reply to No2Sunshine

Thank you no2Sunshine I think I maybe in touch for more advice in the future as I’m still learning

No2Sunshine
No2Sunshine in reply to TillyO

Glad to share my journey and what helps me. Take care.

No2Sunshine
No2Sunshine in reply to TillyO

I forgot to mention I do take Pappian tablets for my tummy/gut on the occasion it is upset.

TillyO
TillyO in reply to No2Sunshine

I’ll look them up as never heard of them thanks

I started off with leaky gut syndrome. Probiotics played a massive part of our recovery.

I am sure this is true. I became seriously ill with symptoms of drug-induced lupus in 2000 after courses of a broad spectrum antibiotic which I didn't need and I should not have been prescribed with penicillin allergy. Pre-biotic food is the only thing that can help me; I can't take any drugs, probiotics or prebiotics, etc. The drugs in hospital also damaged my kidneys and liver, digestion, etc., I have allergies, too.

Newby12
Newby12 in reply to Cann

An older study, 2014 but saying much the same:

blog.designsforhealth.com/s...

Cann
Cann in reply to Newby12

Thanks, Newby12, I am sure the sharp rise in cases of lupus in recent years is due to the enormous strain put on our immune systems by all the toxins - pesticides, wifi, chemical drugs, traffic fumes, air pollution, etc. With a high percentage of our immune system being in the gut it is not surprising that these studies have found such results. It is how to change it that is the problem especially if one can't take probiotics and prebiotics other than in food.

If this is the case, does that mean Lupus would be classified as disorder that can be cured instead of a chronic disease??

I’ve read this before so I started adding pre and probiotics. Raw Potato starch and sauerkraut.

Hi,

Lupus sufferers have got to be careful with over-egging this line of research.

As far as I’m aware there is no cure for lupus and all its complex manifestations and flare ups!😰. As you know it is a complex, inflammatory autoimmune disease whereby our immune system is attacking our own tissues, organs and organ systems. Very simplistic I know but why?🤔

We are all different in terms of lupus severity eg some sufferers only have DLE whilst others have SLE with serious kidney involvement (lupus nephritis).

As patients we are prescribed a range of different medications which are always/should be under review by our doctors. We all react to the meds differently 🤔.

This line of research is not conclusive but only suggestive of what triggers lupus or lupus flare ups! What is hopeful is that the Foundation has attracted funding which could lead to a better understanding of how lupus arises.

Regards

Newby12
Newby12 in reply to Howpeculiar

An older study but saying much the same:

blog.designsforhealth.com/s...

Hi Due- petal

Most interesting read , I’m going to eat more probiotics in the future .

Thank you for this post

🦋❤️

Newby12
Newby12 in reply to Willow1414

An older study, 2014 promoting probiotics:

blog.designsforhealth.com/s...

Willow1414
Willow1414 in reply to Newby12

Hi Newby12

Thank you for this very important interesting further information .

Could it be antibiotics disturb the balance ?

Wonder what any body else thinks .

🦋❤️

Hi,

This is what the group discovered:

“...Gregg Silverman, MD, of the NYU School of Medicine in New York, NY, and colleagues studied the bacteria in stool samples from 61 women with lupus and 17 women who didn’t have the disease. They discovered that the patients with lupus harbored fewer bacterial species overall. But one species, known as Ruminococcus gnavus, was five times more plentiful in patients with lupus. And the bacterium was particularly numerous in patients who were undergoing flares or who had kidney disease.

Patients with lupus produce immune system proteins known as antibodies that attack their own DNA. Dr. Silverman and his team found that these antibodies also target Ruminococcus gnavus. They also determined that the intestines of patients with lupus were leakier, which could allow bacteria or fragments of them to escape into the body. Once that has occurred, the immune system may respond by producing antibodies that mistake the patient’s own DNA for molecules made by the bacteria. These antibodies would then attack organs such as the kidneys...”

...Researchers still need to confirm that the bacteria cause the symptoms of lupus. But if they do, the discovery could have a major impact on lupus treatment. Changing patients’ diets or providing them with probiotics might reduce the numbers of Ruminococcus gnavus or boost the abundance of helpful bacterial species. Silverman and colleagues report their findings this week in Annals of Rheumatic Diseases...”

Sue_petal
Sue_petal in reply to Ickybicky

Hi

Thanks for posting:

“...They also determined that the intestines of patients with lupus were leakier, which could allow bacteria or fragments of them to escape into the body. Once that has occurred, the immune system may respond by producing antibodies ...”

Just wondering what is actually leaking from the gut into where? The bloodstream?

What about the good bacteria from the gut is that leaking as well?

Stop the leaks?!😇🤔 Would that be a way forward?🤔

An older study, 2014,

blog.designsforhealth.com/s...

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