I am bumping up an old thread here, and I’m really just doing it to put myself in the advanced search function for some other person in the future.
I was recently diagnosed with microscopic collagenous colitis after suffering with it and many many horrid symptoms I didn’t even know were related for many years. I think my intestine may be irreparably scarred and this is something I am going to have to deal with and manage for the rest of my life.
Sadly I had a terrible reaction to the only drug that seems to be helpful to the majority of people in achieving remission- so the only option left available to me is through dietary changes.
I am just starting on that journey and don’t know how that will go or how much it will help- but it’s all I’ve got to work with.
Gluten is the #1 irritant for people with my condition… followed by dairy… followed by soy. I did not test positive for celiac disease- but I may have a gluten sensitivity. I was so glad to see SMF11 jump in on some of the very misleading things said here about gluten sensitivity. problem is- to test positive for celiac through a blood test- has to be a very extreme situation in your body. The gluten problem can wreck havoc in your digestive system (and also manifest in other seemingly unrelated symptoms like joint pain and migranes) before it will show up in your blood- so blood tests for celiac will not tell you the whole story. There is an independent testing laboratory which has pioneered a way to test for gluten antigens in stool samples- so they can detect problems much sooner or of a milder degree.
For people who are feeling worried about knowing if they are eliminating the right thing from their diet- these tests can take away much of that trial and error. They aren’t cheap. It’s what I want for Christmas. (when you read on you will really understand)
https://www.youtube.com/watch?v=py9wwoUP65o
There is something else I just learned about that seems like a major lightbulb on a whole collection of my symptoms and problems- and that is histamine intolerance. It seemed that if anything was going to work for me- I was also going to have to really work on the histamine situation as well. This problem is well known and understood in Europe- but in the USA it seems that it’s a very quiet group of fringe people who even know about it. You can find a lot of info about it online- no one I’ve mentioned it to has even heard of it.
My (current trial) histamine restrictions have me cutting out-
All alcohol
chocolate
fermented foods or aged meats or cheeses, vinegar
any leftovers
meat that was stored refrigerated raw
etc etc… it’s an exhaustive list but these aforementioned things were big chunks of my diet before.
Then the colitis food sensitivity list (things that might be causing inflamation due to an inapropriate response of my immune system against my digestive system) has me cutting out- all gluten grains and oats, all dairy, and all soy (and soy additives EVERYSTINKINGWHERE) and legume (peas lentils beans)
And then for the icing on the cake- the mechanical issue of the current intestinal inflammation has me unable to eat any salad, raw fruits, uncooked vegetables, or high fiber foods.
So if you want to try to cut gluten out of your diet- and you are convinced that you can’t do it- maybe thinking of me will give you the courage to give it a try.
I haven’t had any progress yet with my digestion- but my constant allergic problems with my nose and sinuses seems to have vanished. another one of those phantom seemingly unrelated symptoms- stress incontinence with urine (yeah double up on allergic sneezing and stress incontinence if you want to be really cranky) that is also GONE. I thought that it was just because I’d had 4 kids. I thought that the only way it was going to get fixed was maybe surgically if I ever wanted to go there… but it’s gone (and yes I have sneezed a few times to know that it’s not just the lack of sneezing that helped me)