Anybody diagnosed with microscopic colitis?

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Profile picture for szelisk @szelisk

@ndough, here is a basic summary of Collagenous Colitis (MC)

The strongest evidence is for collagenous colitis

A major genetic study examined 804 patients with histologically confirmed collagenous colitis and compared them with controls. It found three HLA alleles associated with increased risk:

HLA-B*08:01
HLA-DRB1*03:01
HLA-DQB1*02:01

These are all part of the HLA ancestral 8.1 haplotype. The study also found a protective HLA allele, HLA-DRB1*04:01.

This matters because HLA genes help the immune system recognize and respond to substances in the body and gut.

Jump to this post

@szelisk If you don’t mind my asking, how old are you? The reason I ask is because Microscopic colitis was first discovered in the mid-70’s, when the first sub-type (collagenous) was identified). The second (lymphocytic) was identified in 1989. I point this out because the study you refer to is not a major study. It is only one study. Microscopic colitis went for decades after it was identified still being relatively unknown to many doctors, mainly because it’s associated with women. I’ve had it for 35+ years. I am now in my 70’s. I have followed these “studies” and not much research until fairly recently has been done, most still hypothesis. I have collagenous colitis but it is not anywhere in my family history- near or far.

REPLY
Profile picture for szelisk @szelisk

@ndough, yes, you are 100% correct. However, there is a big difference between them. Generally, Lymphocytic colitis heals after one treatment of budesonide and is not known to recur once treated. Now, Collagenous colitis is a different story. Approximately 50% of patients relapse after Budesonide treatment. Of those 50%, about 20% go on to need additional treatments and potentially develop other chronic GI issues.

Jump to this post

@szelisk I’m aware.

REPLY
Profile picture for kayabbott @kayabbott

@szelisk There was only one reference from 2016 indicating that LC doesn't show a genetic component(s) and it was not the research focus for that paper, so not enough to rule out HLA or other genetic associations for LC. LC is considered by some an earlier stage of collagenous colitis (CC) (both are microscopic colitis). When my MC was diagnosed 10/2017 there was almost no peer-reviewed research on CC (still not much). I have celiac (17 years) with HLA-DQ8 0302, so a likely link. The celiac was probably triggered by H1N1 followed a few days later from the stress of some guys trying to murder me. The GI that did the celiac scopes and biopsies was 6 mo after the start of celiac so minimal damage to intestinal villi; he screwed up because he was convinced that I didn't have celiac due to absence of anemia, and decided I instead have diverticulosis (still negative). He only had me off gluten for a week and just one small intestine biopsy. So, it took CC to convince the doctors that, yes, I have celiac. Having HLA-DQ8 wasn't enough because around 3-8% of the population has that. We really do need to advocate for ourselves. I'm a 72 yo retired research scientist. As an aside, the GI did find rather nasty gastric reflux damage to my esophagus that I didn't know I had. It was clear on the endoscopy 5 years later and the GI and nurse were surprised that all I did was go gluten free (and sleep on my left side more).

Jump to this post

@kayabbott, I agree. I'm also a clinical researcher; I was diagnosed over 20 years ago with celiac disease. Unfortunately, I have never had a clean biopsy, even being gluten-free. (Several blood and stool tests proving my gluten-free diet is great). Collagenous colitis was diagnosed 10 years later, and now I'm listed as refractory Celiac. Unfortunately, many GI physicians kind of look away and say Oh well. I told my GI I was the problem child, and now he agrees. 🙂

REPLY
Profile picture for ndough @ndough

@szelisk If you don’t mind my asking, how old are you? The reason I ask is because Microscopic colitis was first discovered in the mid-70’s, when the first sub-type (collagenous) was identified). The second (lymphocytic) was identified in 1989. I point this out because the study you refer to is not a major study. It is only one study. Microscopic colitis went for decades after it was identified still being relatively unknown to many doctors, mainly because it’s associated with women. I’ve had it for 35+ years. I am now in my 70’s. I have followed these “studies” and not much research until fairly recently has been done, most still hypothesis. I have collagenous colitis but it is not anywhere in my family history- near or far.

Jump to this post

@ndough, I'm 62 right now. I was diagnosed with Celiac when I was in my mid-30s and MC in my 40s. Unfortunately, I seem to develop unique issues.

REPLY
Profile picture for szelisk @szelisk

@ndough, I'm 62 right now. I was diagnosed with Celiac when I was in my mid-30s and MC in my 40s. Unfortunately, I seem to develop unique issues.

Jump to this post

@szelisk Yes. I think that happens a lot. At the time I was diagnosed, the two main choices were ulcerative colitis (not) or IBS (nope). I can’t believe it took 30 years to be properly diagnosed, and that was 10 years ago. Even though my GI wanted to try Budesonide, my regular PCP said she would rather I didn’t take any type of steroids at all, based on a number of reasons. I agreed with her. So, I manage it mainly through diet. Doesn’t always work but it’s the best I can do.

REPLY
Please sign in or register to post a reply.