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  1. Hi, just wondering, when did you determine you had gluten intolerance, especially with active uc. I am considering a permanent ileostomy too, rather than a pouch, as I am at the end of my rope. Just tried fecal transplant. Also, what are the disturbances
    , noises you get from the stoma. I am a teacher and a little concerned about that around students. Thanks

    1. Hi Kirstin,

      At the time of my official UC diagnosis in 2006, I had already had active UC symptoms for 7 years and had been to numerous doctors and had a couple of scopes done. No one was able to diagnose it. It wasn’t until I moved to CO and got a new doctor that I was finally diagnosed. Within a week’s time, my doctor had me get a gluten intolerance blood test, and endoscope of my upper GI tract, and a colonoscopy of my large intestine (because I was having a lot of bleeding). The blood test came back positive for gluten intolerance. The endoscope didn’t show blunted villi, so the doctor could never confirm I had true celiac disease. She told me to go gluten-free indefinitely anyway due to the positive blood test. I was also told at that same time that I had UC which showed up on the colonscopy of my large intestine. Talk about a bundle of new conditions to learn about at once! I was completely overwhelmed.

      At that time, I went on a strict gluten free diet, and have stuck with it ever since. Unfortunately, the diet never made any difference in my UC symptoms other than make me feel a little less bloated. I continue with the diet after my ileostomy surgery because I know my body produce antibodies to gluten which isn’t good for me.

      I know how it feels to be at the end of your rope with UC. That is the point I had gotten too, and I had not even tried things like fecal transplant or the full on SCD diet. My final flare came on fast and furious. One moment I was feeling great, working, doing all my active outdoor pursuits and a few weeks later I was extremely ill, going to the bathroom 25+ times a day, in a hospital bed 25 pounds lighter and barely able to walk. It was a real wake-up call for me. I felt like getting out of that flare was so tenuous. I didn’t want to take chances with the next one, which I knew would come along eventually. I wanted to get off the UC rollercoaster ride and pursue permanent ileostomy surgery.

      As far as noises… my stoma does make them sometimes. I have gotten fairly in tune with my body and can feel when a noisy spell might be coming on. It is hard to describe, but I feel a bit of pressure near my stoma right before it releases gas. When this happens, I will take my forearm and hold it tightly against my stoma and it muffles the sound. Once in a while a noise will sneak out unexpectedly (which always seems to happen during the most quiet meetings at work), and I just laugh and shrug it off. Overall though, it doesn’t happen that often and noisy spells only last a few minutes for me before things settle down. I mainly get a noisy stoma when I have an empty stomach and then eat a meal– for instance, when I eat breakfast after not eating all night or sometimes after dinner if I haven’t snacked much in the afternoon.

      Thanks again for the great questions and best wishes with whatever you decide.

      -Heidi

  2. Kirsten..I also teach school (6th graders) and of course, passing gas is hilarious at that age. So far, I’ve been lucky and it’s not been that noisy. I’ve noticed it most in the middle of the night when I drink some water and go back to bed. Also, it tends to make more noise if there is no food to digest, thus only air comes out. It’s going to work whether there’s anything to work on so I just keep snacking! Good luck!

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