Hi all
Great to find this forum - it's a gold mine of information.
I am a newly diagnosed 63 year old female. Following colonoscopy after months of severe symptoms, my GI diagnosed MC. I asked which type and he said "You don't need to know that". I also asked about dietary changes and he said there is no need to make dietary changes. He has put me on 9mg Budesonide for 3 weeks with a follow-up appointment mid-June. I suppose, if I'm honest, I'm finding his manner a bit patronising and unhelpful, but hey ho, I'll try to manage the relationship. The Budesonide has definitely helped massively with the main symptoms, but I'm a bit nervous as to what will happen when I stop taking it.
Anyway, thanks to everyone for sharing experiences and advice - I think I may find this site a whole lot more helpful than the GI!
Keep as well as you can, folk.
Lou
Another newbie introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Another newbie introduction
Hi Lou,
Welcome to the group. According to published medical research, 85% of MC patients relapse after their budesonide treatment ends. And most gastroenterologists will still pretend to be surprised at that news. Most of us are able to prevent a relapse by changing our diet as we begin the budesonide treatment, and then doing a very slow tapering of the dose, at the end of the treatment. The slow taper helps to prevent a relapse due to mast cell rebound. We change our diet to avoid all the foods that are causing our immune system to produce antibodies. By doing that, we can enjoy life free of symptoms, thanks to the budesonide, while the diet changes prevent the inflammation that's causing our MC reaction to be perpetuated. Eventually, the diet changes will allow our intestines to heal, and our digestion will improve significantly.
You sound like many of us – we humor our gastroenterologists, and pretend that we believe them, despite their ignorance about MC, just in case we might need them for writing a prescription, or ordering a test.
It's kind of sad, but after you've been here for a few days reading posts, you'll probably know more about successfully treating MC than about 98% of the gastroenterologists in the US.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. According to published medical research, 85% of MC patients relapse after their budesonide treatment ends. And most gastroenterologists will still pretend to be surprised at that news. Most of us are able to prevent a relapse by changing our diet as we begin the budesonide treatment, and then doing a very slow tapering of the dose, at the end of the treatment. The slow taper helps to prevent a relapse due to mast cell rebound. We change our diet to avoid all the foods that are causing our immune system to produce antibodies. By doing that, we can enjoy life free of symptoms, thanks to the budesonide, while the diet changes prevent the inflammation that's causing our MC reaction to be perpetuated. Eventually, the diet changes will allow our intestines to heal, and our digestion will improve significantly.
You sound like many of us – we humor our gastroenterologists, and pretend that we believe them, despite their ignorance about MC, just in case we might need them for writing a prescription, or ordering a test.
It's kind of sad, but after you've been here for a few days reading posts, you'll probably know more about successfully treating MC than about 98% of the gastroenterologists in the US.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.
Re: Another newbie introduction
Thanks Tex. Your time in responding is much appreciated. I'm learning a lot from this site. Will keep you all posted how things go. Lou 
Re: Another newbie introduction
Hi I’m new here and have no idea if I am posting this correctly or not. I am 59 years old and female. I have auto immune arthritis issues that can’t be definitively diagnosed so they call it Undifferentiated Connective tissue disease. I have Osteoarthritis in my back and have had disc replacement surgery at age 36. I also have Gout and Plantar Fascitis. I take Leflunomide which is an immunosuppressant and Allopurinol. I was also on a daily NSAID for over a year.
I was diagnosed with LC and Gastritis this month after an EGD and colonoscopy. The Dr told me I had colitis but I only found out what kind after reading my biopsy report. When I asked about diet he said no special diet just don’t eat what bothers you! Well every thing I eat gives me WD so?? He gave me Budesonide and said come back in 8 weeks. Prior to my symptoms of WD beginning in February I was on a diet of mainly 3 meals a day with a lean meat, a vegetable and a small portion of fat each meal. No dairy or fruit. It was to lose weight. I had lost about 25 pounds and still need to lose another 40. Since diagnosis through reading I am following a low fiber, dairy free gluten free diet. I’m on day 8 of Budesonide and today is the first day of no WD. I am however gassy and bloated. I’m sorry for the book here but I am so overwhelmed and getting depressed after reading how difficult this disease is to control. My first priority obviously is to get the WD under control but unlike most people on this page I seem to struggle with being overweight. How do you lose weight and eat to control the symptoms? I’m eating potatoes and white rice with only carrots, cooked squash or green beans at this point along with chicken or turkey. Please help I’m struggling so with all of this
I was diagnosed with LC and Gastritis this month after an EGD and colonoscopy. The Dr told me I had colitis but I only found out what kind after reading my biopsy report. When I asked about diet he said no special diet just don’t eat what bothers you! Well every thing I eat gives me WD so?? He gave me Budesonide and said come back in 8 weeks. Prior to my symptoms of WD beginning in February I was on a diet of mainly 3 meals a day with a lean meat, a vegetable and a small portion of fat each meal. No dairy or fruit. It was to lose weight. I had lost about 25 pounds and still need to lose another 40. Since diagnosis through reading I am following a low fiber, dairy free gluten free diet. I’m on day 8 of Budesonide and today is the first day of no WD. I am however gassy and bloated. I’m sorry for the book here but I am so overwhelmed and getting depressed after reading how difficult this disease is to control. My first priority obviously is to get the WD under control but unlike most people on this page I seem to struggle with being overweight. How do you lose weight and eat to control the symptoms? I’m eating potatoes and white rice with only carrots, cooked squash or green beans at this point along with chicken or turkey. Please help I’m struggling so with all of this
Re: Another newbie introduction
Hi,
Welcome to the group. Since you've already adopted a gluten-free, dairy free diet, you are well on your way toward recovery. The budesonide should mask your symptoms while the diet changes allow your digestive system to heal. As you begin to wean off the budesonide, if you begin to react, you may need to avoid all products that contain soy, also. And you may need to avoid chicken eggs.
One of the common side effects of budesonide is weight gain. But after you wean off the budesonide, you should begin to lose weight. Most people complain of losing too much weight while recovering from MC.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Since you've already adopted a gluten-free, dairy free diet, you are well on your way toward recovery. The budesonide should mask your symptoms while the diet changes allow your digestive system to heal. As you begin to wean off the budesonide, if you begin to react, you may need to avoid all products that contain soy, also. And you may need to avoid chicken eggs.
One of the common side effects of budesonide is weight gain. But after you wean off the budesonide, you should begin to lose weight. Most people complain of losing too much weight while recovering from MC.
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.
Re: Another newbie introduction
Thank you I’m hoping for the best. This is just so hard to get my head around.
Mary
Mary