I was diagnosed with MC a little over a year ago and lost about 10 lbs of which I have not been able to regain and recently lost another 3-4 lbs and down to 78lbs . It happened soon after I had an incisional hernia repair (Gall bladder)I was put on Budesonide 9mg with taper when needed. I seemed to have a quick remission after several weeks . At that time I was seeing a dietitian who suggested to start on the Fodmap diet and was free of MC for about 2 months . It seemed return after reintroducing some foods . Last December I was placed on some Prednisone for a virus and since then it seemed that my MC was poorly controlled . The dietitian did recommend some supplements which had no relief . I have been taking the Budesonide since then with 1 week remission at a time and then have to return to the Budesonide . My GI Dr feels that diet does not matter and did not want to hear what my dietitian suggested for further test or supplements . For the last 2 months I have been seeing another dietitian who's main goal to is to help me gain wt and felt that I might have to stay on the Budesonide but to continue with the Fodmap diet and Gluten Free, Lactose Free . She also did a Blood sensitivity (via Everlywell) which showed that I was only sensitive to Ginger and Garlic . I am at a lost! I do not want to continue with the Budesonide as I had to go on a medication called Evenity to treat Osteoporosis and recently leaned that Budesonide and Evenity can cause problems if taking together . I got the book on the MC diet and gave it to my dietitian who was willing to check it out .Next week I see my GI dr and the dietitian again. I also recently started on Bone Broth and have been trying your diet recommendations . Any suggestions would be appreciated .
Thank You
Glenda
New to the forum
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Re: New to the forum
Hi Glenda,
Welcome to the group. Regarding This disease, in a nutshell, here's a basic description of the unique features of this disease, and how to treat it:
We all appear to be sensitive to gluten, and the celiac screening tests offered by doctors normally will not detect it because we don't have enough small intestinal villi damage to qualify for a celiac diagnosis, and most of us have non-celiac gluten sensitivity, anyway, and they have absolutely no test available that they can use to diagnose non-celiac gluten sensitivity. And the celiac screening tests they use are so insensitive (mostly because of the strict diagnostic criteria), that only about one in 20 celiacs are able to to get a confirmed diagnosis, so the rest continue to suffer because their doctors will incorrectly tell them that they don't have celiac disease, so they can't be sensitive to gluten (a claim unsupported by medical research). The disease (celiac disease) was first described approximately 2000 years ago, and doctors are still unable to effectively diagnose most cases, which can only be described as a rather pathetic situation. And unfortunately, because microscopic colitis (MC) was first described less than 50 years ago, they really have a poor understanding of it.
Telling someone who has digestive problems that the foods in their diet don't matter, is like telling someone working in a coal mine that air pollution doesn't cause long problems.
MC is initially caused by inflammation that leads to increased intestinal porosity (leaky gut), which causes our bodies to develop certain food sensitivities which perpetuate the inflammation by causing our immune system to produce antibodies against them, meaning that those foods regenerate the inflammation with every meal. So we have to help each other try to figure out exactly which foods are causing our immune system to produce antibodies that cause our digestive system to react, and then meticulously avoid every one of those foods with our diet, in order to stop the inflammation and allow our digestive system to heal, so that we can get our health back. About three fourths of us are sensitive to casein, which is in all dairy products, and about two thirds of us are sensitive to soy and/or chicken eggs. We have to minimize fiber and sugar for our recovery diet, also, and we have to avoid artificial sweeteners and citric acid. For most of us, it's virtually impossible to gain any weight back until we have the disease in remission, because the inflammation associated with the disease causes serious malabsorption of the nutrients in our food, so many of them go down the toilet.
Approximately 80% of MC patients who respond to budesonide treatments, relapse when the treatment is ended if they haven't made the proper diet changes, and don't taper the budesonide dose far enough. And published research shows that each time budesonide treatments are stopped and restarted, the budesonide is less effective, so that eventually, it will lose its efficacy for repeated treatments.
So basically, that's what were facing, with this disease. But the good news is that thousands of us have been able to reach remission and stay in remission indefinitely by making the proper diet changes, and it can be done with or without medications.
I hope this helps you to understand the disease, and how we approach controlling it. MC can't be cured, but it can certainly be controlled.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Regarding This disease, in a nutshell, here's a basic description of the unique features of this disease, and how to treat it:
We all appear to be sensitive to gluten, and the celiac screening tests offered by doctors normally will not detect it because we don't have enough small intestinal villi damage to qualify for a celiac diagnosis, and most of us have non-celiac gluten sensitivity, anyway, and they have absolutely no test available that they can use to diagnose non-celiac gluten sensitivity. And the celiac screening tests they use are so insensitive (mostly because of the strict diagnostic criteria), that only about one in 20 celiacs are able to to get a confirmed diagnosis, so the rest continue to suffer because their doctors will incorrectly tell them that they don't have celiac disease, so they can't be sensitive to gluten (a claim unsupported by medical research). The disease (celiac disease) was first described approximately 2000 years ago, and doctors are still unable to effectively diagnose most cases, which can only be described as a rather pathetic situation. And unfortunately, because microscopic colitis (MC) was first described less than 50 years ago, they really have a poor understanding of it.
Telling someone who has digestive problems that the foods in their diet don't matter, is like telling someone working in a coal mine that air pollution doesn't cause long problems.
MC is initially caused by inflammation that leads to increased intestinal porosity (leaky gut), which causes our bodies to develop certain food sensitivities which perpetuate the inflammation by causing our immune system to produce antibodies against them, meaning that those foods regenerate the inflammation with every meal. So we have to help each other try to figure out exactly which foods are causing our immune system to produce antibodies that cause our digestive system to react, and then meticulously avoid every one of those foods with our diet, in order to stop the inflammation and allow our digestive system to heal, so that we can get our health back. About three fourths of us are sensitive to casein, which is in all dairy products, and about two thirds of us are sensitive to soy and/or chicken eggs. We have to minimize fiber and sugar for our recovery diet, also, and we have to avoid artificial sweeteners and citric acid. For most of us, it's virtually impossible to gain any weight back until we have the disease in remission, because the inflammation associated with the disease causes serious malabsorption of the nutrients in our food, so many of them go down the toilet.
Approximately 80% of MC patients who respond to budesonide treatments, relapse when the treatment is ended if they haven't made the proper diet changes, and don't taper the budesonide dose far enough. And published research shows that each time budesonide treatments are stopped and restarted, the budesonide is less effective, so that eventually, it will lose its efficacy for repeated treatments.
So basically, that's what were facing, with this disease. But the good news is that thousands of us have been able to reach remission and stay in remission indefinitely by making the proper diet changes, and it can be done with or without medications.
I hope this helps you to understand the disease, and how we approach controlling it. MC can't be cured, but it can certainly be controlled.
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.