Article

[sarahalice]

Mentions lupus and that there are so many types, how this makes it harder to treat with the correct treatments.

Interesting read x

The Guardian: Global spread of autoimmune disease blamed on western diet.

theguardian.com/science/202...

[PMRpro]

I thought so too - and I have been saying for years there are different forms of many a/i disorders, like for MS. But rheumies seem to struggle with the idea ...

[sarahalice in reply to PMRpro]

What I've always struggled with, is the lack of knowledge of why this happens to us.I've been told that I have these conditions, likely due to my Irish heritage and once I brought up the phase leaky gut and I got a, yes that's a theory from a rhmy.

Yes, your definitely right. Docs like us all to be in our labelled black and white boxes and they really struggled with the grey symptoms.

If going from the article we might just need a course of the right type of mirco bugs swimming around our bellies 🤣.

Could it be that simple? The trouble is, it would have to be targeted to the individual, so there's no money in that?

Has anyone tried anything like this? Had their pooh examined ??

X

[PMRpro in reply to sarahalice]

I think there is research ongoing about microbiome populations in various disorders. It will take years though - and the article I saw reckoned it might not benefit existing patients, just in theory it could be used to identify the gene pool linked to particular disorders and then a pill with the ideal microbiome used to reduce the risks of developing whatever later in life. Wish I could remember where I saw it - but there is a company that is growing the bugs and working on them being "pilled" - faecal transplants are already in use for certain things, like C.diff, but they do pose certain yuk factor

But the individualised medication approach is coming - based on DNA analysis. Already in use for a few cancers I think. It needs lots of work on linking the various sides of the question though,

[sarahalice in reply to PMRpro]

Yes, I think your right. We were born a generation or two, too early. But its bring a bit of peace that hopefully one day lupus could be cured.

X

[Treetop33]

“If you look at some autoimmune diseases – for example, lupus – it has become clear recently there are many different versions of them, that may be caused by different genetic pathways,” said Vinuesa. “And that has a consequence when you are trying to find the right treatment.

This was an absolute revelation to me - I didn't know. How did we not know? What type do I have then? What are the different types?

I do know that diet makes a huge difference to flares etc. But gut health is also affected by chemicals and pollution, which might also be a factor. Docs have been known to dismiss both as factors, so this should be interesting to see how it filters down.

[sarahalice in reply to Treetop33]

I think that there's so many, they haven't even begun to categorised the types. I always feel like rhemys are just overwhelmed by trying to keep ontop on our symptoms to look beyond that.There has never been much research into SLE compared to illnesses like cancer. But with more and more people developing autoimmune diseases, there should be more of a push for research 🤞

I have been sticking to a vegan diet for 5yrs (2 yrs after my diagnosis). I definitely think its helps, but I don't know what I would my health would have been like if I had stuck to my old diet.

I would love to see more research into diet and SLE

X

[Treetop33 in reply to sarahalice]

Yeah, me too x

[MrsMarigold]

Hi sarahalice. Thx for a very informative article. My Rheumatologist here In US diagnosed me finally with lupus in 2016. My bloodwork and my clinical symptoms were finally synchronized. However, my ANA was middle of the road. And according to an expert at one of the best teaching hospitals here in US “you absolutely do not have lupus because you have no major organ involvement. “And she was the one who caught my dsDNA as highPositive. I returned to my local rheumatologist as he knew I was going for a second opinion. I didn’t want to have lupus!

He said to me the exact message of your article: He could stand twelve or more lupus patients against the wall and they all look different. Ah ha! He also made the point that he wanted to treat me so I do not get major organ involvement!! As far as diet my experience is yes it helps to eat healthy and anti inflammatory. Will it prevent autoimmune disease or make it go away? I

Don’t know but I tend to think not☹️ Thx again.

[sarahalice in reply to MrsMarigold]

I'm very lucky, I don't have any organ involvement also (touch wood!)

Reading the messages on this board, it's clear that there's such a massive range of symptoms, but we are all (most of us) treated the same way.

My GP put it as, you have a immune system that has so many quirks that it could result in any type of symptoms. That horrible as you never know what is the lupus, or what could be the possible side effects of the powerful meds or just something else on top of lupus.

😆 lupus doesn't make it easy for us or the docs!

I definitely live by, trying to eat as healthy as I can (though I might have had a long break from that over the hols!!)

X

[Lupusrelative]

Hi Sarahalice.Have always thought this. Both of my younger sisters suffer from AD’s. One with Lupus and the other with RA. I have recently been diagnosed with fibromyalgia but that is not considered autoimmune.

Why didn’t I get autoimmune? Think it has to do with our then lifestyles. At the age of 26, I went to live in S. America with my then husband and two children. This was in the early 80’s. We lived three hours away from the nearest city. Everything we ate was bought fresh ‘from the field’ each day. No pesticides, hormones etc. Meanwhile, back in the UK, my sisters were starting to enjoy fast foods, pollution etc.

It really does make sense that diet and lifestyle play a role in AD’s.

[sarahalice]

Hello.I'm sorry to hear you have fibro. Did you get much information when you were diagnosed?

I was recently diagnosed with it as well, and I think there are a few lupies with it. I get the impression that the docs aren't very clear about what it is and what causes it. I think its only just been recognised as an actual illness here in the UK in the past few years!? I guess it will soon be classed as autoimmune issue.

There are members of my family on my Irish side, who have autoimmune conditions, some rare. However no one has the same ones to each other, which I find strange.

Are they all the same genetic defect, but went on to develop symptoms in different ways?

I think they will find, if they haven't already, that fast food, normal processed foods, our water and air will all play a massive part in the huge increases of Autoimmune illnesses.

X

[Lupusrelative in reply to sarahalice]

My doctor is very good. Took her a while to rule out RA etc. Eventually diagnosed fibromyalgia. Sent me to PT, which helps. Also sent me to pain management as I have spondylitis and problems at bottom of spine. Didn’t help much though. Gave me Lyrica (pregabalin), which she is gradually increasing. Seems to be helping a little. Yes, it’s a mystery disease. I definitely think diet and environment play a part in these illnesses.

[Jmiller623]

There’s a sizable community also interested in micronutrients, hormone balance and effects on epigenetics. I remember when the whole BPA story gained steam and now most plastics are BPA free.

There’s definitely something about the developed world that has caused an increase in AID. I think it also depends on pollution too. Air pollution in Pittsburgh (I’m in the US) is horrendous. When you think of US smoke stacks, Pittsburgh is close to #1. I had symptoms of lupus since I was a child but wasn’t diagnosed until 3 years ago after I moved here. Things progressed so quickly since moving and when I go back home, my symptoms do get better. No diet changes. And I use mail order meals, all organic. Hasn’t really made much of a difference for me. For some though, diet is a game changer. So something I wonder is why does diet work for some but not others?

Thanks for the share!❤️xx

[sarahalice]

I also saw a report on Teflon, that everyone in the world, even those in 3rd world countries have trace amount of it in our systems🤯. It's nasty stuff that causes so many illnesses.

In the UK, it was recently recognised that a poor little girl, lost her life due to the poor air quality where she lived, this was the 1st recognised case of this, though I'm sure there was plenty before. There's only going to be more cases here. The air is only going to get worse 😔

The diet one is strange one, I believe it could help and helps me. However you could be eating the healthiest of diets and it could be a trace amount of tomato or something else that's triggering the inflammation and you'd never guess.

Hope you have a lovely day x

[DJK99 in reply to sarahalice]

Hey have you seen the film (on Netflix currently) Dark Waters? Explains a lot about why 1 in 2 of us will get cancer. It's the chemical by Dupont that is used to make Teflon etc if I remember correctly. chemtrust.org/dark-waters-a... Scary stuff but good to know. I'm a 1 in 2. Take care. D

[sarahalice in reply to DJK99]

Oh I bet that's what I saw! I have a sieve for a head. I remembered how they struggled to find pure blood without the Teflon in, that they had to use some stored blood from the WW2, crazy. Recently watched Dopesick, Disney +. Its a drama about the opium crisis, and how money comes 1st and how these people and companies have so much power, they are never held to account 😡

Wishing you all the best x

[DJK99 in reply to sarahalice]

Hmmm sounds v familiar 😂😂😂. Hope you doing ok too x

[junemc]

Thanks for this article which I thought was really interesting. I have 2 auto-immune diseases - sarcoidosis & coeliac disease. I have also been referred twice with suspected lupus, but was told I don't have it. I suspect that I had drug induced lupus as on both occasions I had been taking prescribed drugs which are linked to this. I have been on the AIP (auto immune protocol) diet for just over 2 years now. This is based on eating a natural diet (organic where possible), and completely avoiding processed foods. I have to say I feel that this diet, although obviously not a cure, has helped to lessen my symptoms. Oddly enough I read an article in the Daily Mail yesterday which suggested that improving the bacteria in your gut may help people to recover from covid, especially long covid. Doctors were giving supplements containing probiotics and patients were reporting that their symptoms improved substantially. All very interesting!

[sarahalice in reply to junemc]

Hi. Sorry for the late reply.It's such an interesting area. There will be some babies born now, that once weened off mothers milk, will be on a diet that their bodies aren't designed for, will never grow and feed these good bacteria. I use to wrk at a school and was so shocked how many children are eating pringles and redbull for their lunch. Its only going to lead to more illness 😔.

Them in the know, say pickled and fermented veg is great for feeding the good bugs.

I'm hoping that the research they do for long covid will go on to help us too🤞

All the best x

[Lupusrelative]

Agree. What are called ‘nightshade’ plants seem to cause inflammation and flare ups.

[MrsMarigold]

Also, speaking of probiotics: fermented foods, the best being sauerkraut, is a natural probiotic. 2 tablespoons a day is all you need. I tried several years ago to make my own but did not have the patience. I found a sauerkraut at a natural foods store. It is pricey but it has only cabbage and salt.

It is difficult to heal our guts being on meds that most of us are on. But it helps to add the best foods we can.

[sarahalice in reply to MrsMarigold]

Thanks. Ordered some. I know I tried it a few yrs ago and it's not for me. However food is only fuel and medicine so going to try again. Thanks for the info x