Hi,
I am glad to have found this MC support along with the MC Foundation web site. It has kept me from wandering aimlessly about in the void!
My story: I am a 70-year-old woman who is no stranger to autoimmune disease, having been diagnosed with fibromyalgia, Hashimoto's thyroiditis, and autoimmune pernicious anemia when in my early forties, followed by lichen sclerosis in my mid sixties, and having vitiligo that is self-identified. I had LEAP blood testing for food sensitivities about 14 years ago and showed up sensitive to many things. My main problem seemed to be a significant gluten sensitivity, so I went completely/carefully gluten free, which eliminated the severe bloating and gas problems I had been having. I could identify no responses to any of the other identified sensitivities, so I went blissfully forward being only gluten free. I had no continuing gastrointestinal issues following going gluten free. At the time of my lichen sclerosis diagnosis about five years ago, I went through the autoimmune protocol and adopted a dairy, grain, and legume-free diet to go with my already gluten-free diet. The only food that I could detect any sensitivity to was eggplant, which is not hard for me to avoid!
All was fine for about 5-7 years, until February of 2022 when my husband and I had what we identified as "mild tummy bugs" that gave us a couple of days of loose stools. My husband go better, but I most certainly did not. Periodic loose stools morphed into occasional diarrhea which proceeded to once or twice a day diarrhea and finally exploded into 6-10 times per day of watery diarrhea that took over my life. A trip to my primary care physician resulted in stool tests that ruled out bacterial infection and/or parasites. A visit to the local gastroenterologist resulted in a two-month wait for a colonoscopy (not acceptable!) and a diagnosis of MC/CC. I got the diagnosis from the gastroenterologist's OFFICE MANAGER rather than from a medical professional of any type along with a six-week tapering prescription for budesonide. I asked the office manager for an appointment so that I could discuss the diagnosis with the gastroenterologist. The gastro's response was that I was wasting my time and that he would see me after I had finished the course of budesonide. So my next appointment is in August. Yup, I think I need to find a different gastro, but I live in a small town in the middle of nowhere, so this will not be easy!
I am taking the budesonide after doing some research and realize that I could relapse when I finish the course. I am about eight days into it at this point. Right now I am beginning to have some nearly-normal BMs and it is a break that I really needed as I was losing weight that I did not need to lose. I am working hard at limiting my diet to the foods discussed in Tex's excellent MC book and am making good progress. I realize that it is going to be a long haul to figure things out and am contemplating Enterolab testing to help me out. This is not my first elimination diet rodeo, but I am a dedicated vegetable gardener, a good cook, and a true foodie - OUCH!!! And I was being really careful before this MC stuff started...
Advice is welcome, and I thank you in advance.
Ellen
Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Newbie
Hello Ellen,
Welcome to the group. It sounds as though you are off to a good start with your treatment. If your luck holds, by the time you finish the budesonide treatment, your diet changes may be encouraging enough intestinal healing that you won't relapse, especially if you're able to taper the budesonide treatment more slowly than most gastroenterologists suggest.
Unfortunately, many of us have had a similar experience with our gastroenterologists not wishing to discuss the disease. Apparently, they resent patients who request a follow-up appointment to learn how to deal with the disease, because they themselves (the gastroenterologists) don't understand the disease, and they know precious little about controlling the symptoms effectively over the long-term. They prefer to stick their heads in the sand, because that's easier than learning how to control the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. It sounds as though you are off to a good start with your treatment. If your luck holds, by the time you finish the budesonide treatment, your diet changes may be encouraging enough intestinal healing that you won't relapse, especially if you're able to taper the budesonide treatment more slowly than most gastroenterologists suggest.
Unfortunately, many of us have had a similar experience with our gastroenterologists not wishing to discuss the disease. Apparently, they resent patients who request a follow-up appointment to learn how to deal with the disease, because they themselves (the gastroenterologists) don't understand the disease, and they know precious little about controlling the symptoms effectively over the long-term. They prefer to stick their heads in the sand, because that's easier than learning how to control the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.