MICROSCOPIC COLITIS SUPPORT

hi there, I hope its ok to post here without a diagnosis of MC.
I have coeliac disease (symptoms from teens, diagnosed 6 years ago aged 52). Stayed symptomatic despite ridiculously careful GF diet. After (another) long and painful "it's just IBS" debate with GP finally got a diagnosis of Bile Acid Malabsorption (diagnosed by response to meds, rather than formal sehcat scan diagnosis). I also have autoimmune hypothyroidism (well controlled, it feels at the moment).
Long and the short of it is that it's getting progressively worse - despite max meds for the BAM, I regularly have such heavy diarrhoea that I can't leave the house and almost worse than that feel completely wiped out, like I'm running a temperate (I'm not), really very poorly. I feel immediately better once my bowels start behaving. There seems to be no rhyme nor reason regarding what I eat (though obviously GF and know very high fat or loads of fibre won't help - but equally some days these will be fine). I'm often woken up with pain (more like discomfort really) in the night and often need to rush to the loo on waking.
Last week I had a day when out of nowhere i was in real, quite scary, pain with it (unusual) and just produced water all day - about 20 visits to the loo. Immodium made no difference.
My GP says it will be a year at least before I'll be seen by the gastro dept at local hospital so has basically told me to go away and try peppermint tea (i kid you not).
My question - is it worth my forking out huge amounts to go private and get colonoscopy / biopsies done - does it sound likely/possible to you that it might be MC?
Thanks in advance, hope you are all doing ok
TillyX

Welcome to the group. Yes, from your description, it does indeed sound as though you must have microscopic colitis (MC). Coeliacs have a much higher risk of developing MC than anyone in the general public. It seems to me, that having to wait a year before you can even get a diagnosis, let alone start treating this disease, is cruel and unusual punishment. Unless you actually need an official diagnosis, as is the case with coeliac disease, you can control the symptoms of MC yourself (using diet changes, such as we have all done), without the need of any medical intervention. Medical treatments are typically only temporary, anyway, whereas the diet changes will give long-term control for as long as you live, as long as you continue to honor the proper diet changes. The medical profession really doesn't have a treatment for MC, although they continue to take our money, and pretend that they have a treatment, it's an extremely poor option, for most of us. You've already made the most difficult step, which is eliminating gluten from your diet, so eliminating the additional food sensitivities should be relatively straightforward and simple.

I never had an official diagnosis, myself, because when I was reacting, U.S. gastroenterologists assumed that this was a disease of elderly women, and they didn't even bother to take biopsy samples from the colons of men, during a colonoscopy. But I could see the inflammation on the monitor, during my colonoscopy (it shows up as slightly darker pink splotches against the light pink background of the colon). I even asked the gastroenterologist what that was, and he simply shrugged and muttered, "Probably old sites of infection.", so I found my own solutions, and discovered how to control the symptoms by making diet changes, and it has worked well for me. No Doctor has ever questioned my medical status (as an MC patient), nor have any doctors ever questioned any food sensitivities that I list on my record. If/when I spend any time in the hospital (because of other issues), the Hospital staff go out of their way to make sure that I'm provided with meals that avoid my food sensitivities.

But in the US, we have very expensive healthcare. Since you have free healthcare available, you might have different priorities. For me, free healthcare wouldn't matter, as far as my MC is concerned, because I never use any medical services, or medications for MC, anyway. It might matter for you though, I have no way of knowing.

Again, welcome aboard, and please feel free to ask anything.

Tex

to add to Tex's reply above

the suggestions that we make on this site and the MC foundation site is a good foundation for healing for any IBD and further aiding auto-immune issues in general.

- low inflammation eating plan and lifestyle
- the right nutrients. (ie VItd3 and magnesium) to help the body heal and manage inflammation levels

thanks both, very interesting.

I think the problem with not having a formal diagnosis is that I couldn't then rule out this being non-responsive or refractory coeliac - with obviously health implications if so. My instinct is it's highly unlikely to be that, but without more medical intervention I can't be sure. I guess I could push for more coeliac biopsies and see what that showed - but if I'm going in for more scopes again I'd almost rather get it all done in one fell swoop

Some thinking to be done...

many thanks again