Major cause of IBD found

[Jameshuh]

Did anyone else see this article bbc.com/news/articles/c1wwd...

Summary

-Major cause of C and UC found

-'Weak spot' in DNA present in 95% of C and UC sufferers

-Spot is in macrophage master regulator

-Existing drugs found that seem to reverse disease

-Looking for human trials

Not holding my breath but interesting nonetheless just thought i'd share.

[FredaN]

It's an interesting find and hopefully leads to further discoveries.

My only issue with these things is, will it be abused diagnostically? What about the 5% who have IBD without the gene? I was tested for the genes associated with coeliac and told I don't have them, so there's no chance of me developing coeliac disease. At a further appointment, he admitted there was a tiny chance I could still have it without the gene. Likewise I've tested positive for some antibodies, but they can't definitively say it's Lupus until I test positive for one of the specific antibodies, one of which seems to be present in upto 85% of all Lupus patients, the other upto 30%. Now I'm stuck because my rheumatologist thinks some of my symptoms could be caused by IBD because I'm not testing positive for those antibodies, the gastroenterologist (who I saw last November and has cancelled 3 appointments since) says it's not an IBD.

I do realise I'm probably sounding over suspicious due to my my own bad experiences, but I would be definitely be willing to be tested for it! I just hope that specialists don't use this as a definitive diagnostic tool and use it wisely as part of a bigger picture.

[Jameshuh in reply to FredaN]

I don't think you are wrong to think this way. Specialist are people too with all that goes with that. They definitely are too busy to see the big picture sometimes (but can't admit that).

[Brian1977]

I'm currently waiting to get my colon removed but it's a year wait with urgent referral I would love to be given a chance to try new treatment to see if it works. Hopefully this finding helps everyone with this horrible life changing disease

[edwangy in reply to Brian1977]

Why are they removing your colon?

[Brian1977 in reply to edwangy]

I have tried everything over the last 3 years but nothing has worked and I've been in this awful flare for over a year now its horrendous

[Jameshuh in reply to Brian1977]

Very sorry to hear that Brian, it is so debilitating and wears you down. Keep us updated though, this community understands what you are going through like no other and we are here to support each other. Can I ask where you are located?

[edwangy in reply to Brian1977]

I feel like I need the same. I'm in constant pain and can't sleep because of it. I have severe narrowing of the sigmiod, insussception and a rectocele, but the surgeons are still refusing to operate

[Jameshuh]

It might be worth getting in contact with the research team to at least see where things stand. Either way I wish you luck and hope you get things under control.

[Brian1977 in reply to Jameshuh]

Thanks I live in the scottish borders

[Jameshuh in reply to Brian1977]

That's handy, close-ish to where the research is being done. Good luck.