Microbiome gut testing

[sunshine16]

I have SLE secondary sjorgrens and hypermobility and more!

I was diagnosed with generalized dysmotility slow transit pseudo sacculation etc but at the moment having a flare up of gut issues and I am wondering whether to have a microbiome test .Has anyone ever had one? would anyone recommend it or am I just wasting my money! Wishing you all the best Sunday that you can have thanks for reading

🙏😊

[Treetop33]

I had one done but it didn't reveal much. I guess what is really needed is a gut test that can also be read against our conditions. I haven't come across one yet.

[sunshine16 in reply to Treetop33]

Thank you for your reply😊

[Cathyan]

There was a long thread on here last year that might be helpful healthunlocked.com/lupusuk/...

[sunshine16 in reply to Cathyan]

Thank you so much 😊

[OldTed60]

I have same conditions as you (Sjogren’s and EDS) - only scleroderma rather than SLE - also Hashimoto’s. My dysmotility is confirmed as severe throughout. I had a first micronutrient blood test done by neurology and it was very comprehensive. Some samples had to be wrapped in tinfoil immediately to avoid light exposure. It only showed one deficiency, B1/ Thiamine. I’m now on prescribed daily thiamine 100mg for 3 months but no idea if it’s helping or not or how long I’ve had this isolated deficiency for. I asked my gastro if they would retest as I’m not under neurology per se - but she wrote saying they only test patients on TPN by vein. My veins are very poor and I’m immunesuppressed so this seems a bit neglectful to me but my GP practice will have to do it otherwise.

If you want to get a test privately then I’d go for a similarly comprehensive screen. I’m thinking I may have to go down this private route myself too in future but would opt for a micronutrient blood screen same as one I had on NHS.

[sunshine16 in reply to OldTed60]

Thank you for your reply sorry that your suffering... It's really hard finding legitimate tests as well. best wishes😊

[michaellasmith Administrator]

Hi sunshine16,

I hope you are well.

I am unable to comment or advise whether the gut testing is right for you, however, I have included below a link to a piece of research into gut health in those with SLE, you may find this helpful in making your decision.

lupusuk.org.uk/investigatin...

Let us know (if you want to) if and how you get on with the test.

Warmest regards,

Michaella 😊

[sunshine16]

Hi Michaella, thank you for your reply ,yes I saw that article in the lupus magazine which I found really interesting. If I decide to go ahead with the gut testing I will definitely let you know

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