Have any of you been tested for Anti-vinculin and Anti-cytolethal Distending Toxin B Antibodies

[BumbleBeeBumble]

I am considering this test. Wanted to know others experiences with it.

here is a link to the one lab that provides the test:

ibssmart.com/how-to-diagnos...

[Maureen1958]

That's a new one on me. What's it all about?!

[BumbleBeeBumble in reply to Maureen1958]

How I understand it is that some people at some point get an intestinal infection that passes on it's own but are left with an autoimmune reaction that attacks the nerves in the GI tract. The presence of Anti-cytolethal Distending Toxin B Antibodies and Anti-vinculin antibodies indicate that the GI tract is being attacked by your own body.It is a relatively new test.This is for IBS-D or IBS-M.

[Maureen1958 in reply to BumbleBeeBumble]

Sounds interesting. I have always felt there was an autoimmune thing going on with me. How do you get the test?

[BumbleBeeBumble in reply to Maureen1958]

ibssmart.com/how-to-diagnos...

commdx.com/ibschek-capillar...

[Maureen1958 in reply to BumbleBeeBumble]

Hmm. Looks like it just tells you if you have IBS due to food poisoning. Only in the States too. It costs $220. I'm in the UK. In the UK we just go to our GP and they do blood tests at no cost. Admittedly, it doesn't tell you if you have had food poisoning, but even it it did, there doesn't appear to be anything you can do for it! You might be better of just visiting your doctor, I guess it depends how much that costs in the US!

[BumbleBeeBumble in reply to Maureen1958]

There is treatment. It's called xifaxan and it treats the build up of bacteria in the small intestine. The bacteria build up is caused by the damaged nerves not functioning properly due to the autoimmune response. This slows peristalsis.

It does more than tell you if you had food poisoning. It tells you if the food poisoning as triggered an autoimmune disorder. Knowing that is very important. Their will likely be treatments for the actual autoimmune disorder eventually but this is a recent discovery and things move slowly.

The autoimmune disorder can damage nerves in any area of the GI tract. Even the gallbladder.

[Maureen1958 in reply to BumbleBeeBumble]

Isn't xifaxan what they give you for SIBO? I haven't heard of anyone that has taken that to get better! But perhaps somebody else will reply to you who has had some luck with it.

Let us know how you get on with it, if you decide to give it a go though.

Good Luck.

[BumbleBeeBumble in reply to Maureen1958]

I take it. It kills off the bacterial infection that is caused by the malfunctioning gi tract. But if the gi tract is still malfunctioning the infection comes back. I will require it periodically possibly for the rest of my life. SIBO is just a complication due to damaged nerves in the GI tract or medications that slow motility or other medical conditions that disrupt peristaltic action.

[BabsyWabsy in reply to BumbleBeeBumble]

Interesting. I can trace my gut issues back to a bout of Norovirus.

[xjrs in reply to BumbleBeeBumble]

Please see my post above - you are talking about SIBO and not IBS.

[xjrs in reply to BumbleBeeBumble]

Hang on a minute. I believe you may be getting IBS mixed up with SIBO. IBS and SIBO are 2 different conditions, although SIBO may give IBS like symptoms. Xifaxan is for treating SIBO and not IBS. I really can't see any point in having this test. Many people can relate their IBS starting to a bout of food poisoning. This is what happened in my case. The only treatment they talk about on the website is doing the FODMAP elimination and reintroduction diet which we all know about anyway.

[BumbleBeeBumble in reply to xjrs]

Irritable bowel syndrome is a catch all term with many different causes. My IBS is caused by a motility disorder that causes SIBO that also has it's own underlying cause.

[xjrs in reply to BumbleBeeBumble]

Indeed SIBO itself does have a distinct set of causes dysmotility being one of them.

[xjrs]

I have just had another thought. What is really concerning about this test is that I can't see any mention about carrying out all the other tests needed to rule out inflammatory bowel disease or cancer, which is the current diagnostic tool for IBS. This means someone could have IBS like symptoms, get this test and think right, I have IBS, when they could have inflammatory bowel disease or cancer. There is nothing to say that someone with inflammatory bowel disease or cancer may not also have had a previous gut infection for instance caused by food poisoning which would result in a positive for this test. This means that people could have these very concerning diseases missed.

Sorry to harp on about it, but I wouldn't want other people to think that this is the new panacea for IBS.

On the up side, I know that you are trying to help others by mentioning this, so I know your intent is good or you think that you may be able to help yourself with it, so thanks for finding out about it.

[BumbleBeeBumble in reply to xjrs]

Any doctor worth their salt would always do a colonoscopy on a patient with IBS. If they are not doing so they are being negligent.

There is actually a good reason to find out if your body has developed an autoimmune disorder which is what my initial post is talking about. An autoimmune disorder that attacks the nerves "anti vinculin antibodies" in the GI tract. That way when they do develop treatment of the actual autoimmune disorder that can be done. Im sure eventually there will be something developed but this is a relatively new discovery.

But one would need to take these tests to figure it out in the first place. I understand that not all IBS is caused by infection. This post was intended for those that believe theirs is.