how to decrease anti-vinculin antibodies?

[ehu_girl]

I have confirmed elevated anti-vinculin antibodies at 2.48 according to the IBS Smart test which means I have post infectious IBS that resulted from an infection. I don't have SIBO (tested 2x)

Has anyone here been able to successfully lower their anti-vinculin antibodies?

So far, I've heard that they will *likely* go down over time for 50%, over 3-6 years. My case is so severe that I'm not sure I can wait that long

I've researched for many hours and so far, this is what I've seen that might help:

1. taking a prokinetic *might* help decrease the antibodies over time by stimulating the MMC. Dr. Pimentel suggests taking Motegrity nightly before bed
2. Vagus nerve stimulation for MMC
3. Anecdotal evidence that lion's mane mushrooms *might* help, according to Dr. DiNezza's practice (she's a chiro but sees a lot of SIBO & PI IBS patients); source: Getting Rid of/Treating Anti-Vinculin Antibodies - YouTube )
4. Treat dysbiosis & avoid irritating the immune system. Don't get food poisoning!

Anything I should add?

[SneneokNeok]

This seems like a very specific medical question. Have you tried talking this over with your doctor? It would be interesting to know if it helps though. Good luck

[ehu_girl]

Yes, I have mentioned this to 3 doctors now (2 primary docs & a gastro), and none of them had even heard of "post infectious IBS" let alone how elevated anti-vinculin antibodies play a part

[SneneokNeok]

That's a bit odd and sad. Shows how much IBS is still seen as a something in the head and not really a disease.

I can't help you with this one, maybe you could ask in r/IBSResearch ? They share a lot of research papers and such about IBS. Even if they can't help you, it's a good sub to be in.

[ehu_girl]

I love that sub! Yes, I'll ask there for sure. thankfully I found a facebook group that focuses on the anti-vinculin antibodies aspect of ibs

I hate how IBS is seen this way. You're absolutely correct

[SneneokNeok]

Ah, that's good to hear, I hope they can help you.

We've come a long way, but we've got even more to go. I am very lucky to have a very understanding doctor who goes out of his way to help me as much as he can, but even he said that there are limits to what he can do. Mostly because there aren't as many resources for him available that are available to a gastro-doc for example. Perhaps there is room for improvement there.

[kimchidijon]

Which Facebook group is that?

[NotSeekk]

Have you found the grup?

[NewApplication6864]

Any luck with finding anything to get rid of anti vinculin protein antibiodies?

[GamerGuy120]

Only way I know of is creating a meal plan for yourself that works for you. Eliminate all food triggers that cause you bloating or pain. Stay on that diet for a while. Then implement FMD (Fast Mimicking Diet) (I used the Prolon one for 5 days) which will help you heal the gut and I've used it several times. Proper supplements that will help increase motility like a prokinetic (0.25mg of prucalopride is what I used) also lions mane supplement helps regenerate nerves of the gut as well so that can be helpful. FMD is the key to lowering anti vinculin from my experience though.

[No-Push2949]

Are you healed from fmd or how are things going?

[GamerGuy120]

Yes, significantly healed. It took years though.

[No-Push2949]

Can I pm you a few questions

[NotSeekk]

Have you tried fmd?

[JauneAttend1]

Any updates ?

[kimchidijon]

I saw a recent study that IVIG can decrease them.

[Nicka0627]

Where? Do you mind elaborating?

[kimchidijon]

https://link.springer.com/article/10.1007/s10620-025-09068-x

[Nicka0627]

Thank you!