Anybody diagnosed with microscopic colitis?

@ndough, WOW, I'm sorry to hear this. Heart disease is strong in my family. My mother had her first quad bypass when she was 42. I'm the only one of the 5 who hasn't had a heart issue before 30. Now, I have to admit I only have 1 side of my family with health issues. The GI has now explained MC was genetic and very common with Celiac disease. Saying prayers for you.

@szelisk None of my GI’s have said anything about MC being genetic, but it hasn’t been that long since research was started on it. It is an autoimmune disorder.

Budesonide is a designer steroid with a more localized effect; unlike prednisone and some others, so one generally has to be on it for many months for symptoms to rear up. I was on it for 15 months and stopped because the skin on my forearms was getting a bit thin. I've been off it for 5 months without flares. My collagenenous colitis (CC) was diagnosed about 9 years ago but controlled with diet (fiber, mostly Mediterranean, GF due to Celiac). I also take turmeric supplements with meals, around 3 gm/day; there isn't much research on if that helps or hurts CC, but my GI tract tolerates it and the anti-inflammatory properties may help in preventing flares. The main factors that I have found in controlling CC are managing stress, and getting enough rest/sleep.

@janstur it's the powder. You could use some of the other brands but that one worked better for me.

@ndough, lymphocytic microscopic colitis doesn't show a genetic component. However, collagenous does.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7483815/

@szelisk Collagenous colitis is microscopic colitis. There are two types of microscopic colitis: Collagenous colitis and Lymphocytic colitis. They are both under the name of “microscopic colitis”.

@drandolph1951 Just make sure what you get is psyllium husk.

@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.

@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.

@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).