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Celiac and collagenous colitis
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Celiac and collagenous colitis
Hi there, I'm new to this forum. I found out one year ago that I have celiac and collagenous colitis. The problem is that I have been very strictly gluten free for 9 monthes now, but cannot seem to tolerate just about all foods. I'm basically living on rice, potatoes, and lean beef. I've gained alot of weight eating like this. I'm sensitive to asprin so am staying away from high slicylate foods and additives, but not much luck in getting over the feeling that I still have celiac. Anyone else with the same problem? I'm 53 and have food allergies and intolerance since childhood.
Hi,
Welcome to our internet family. We are seeing more and more members with a dual diagnosis of celiac disease and MC. Unless I am mistaken, most of them have lymphocytic colitis, rather than collagenous colitis. I suppose that's' irrelevant, though, since the symptoms, and the treatment, are the same, and it's possible for CC and LC to segue back and fourth, from one form to the other, and back. GI docs seem to be doing a better job of diagnosing both these diseases. I've seen speculation, by researchers, that anyone with celiac disease who has other food intolerances, (besides gluten), almost certainly has MC, also. If that's true, then there are probably a lot of celiacs around, with have undiagnosed MC.
In general, IMO, MC is a lot more difficult to bring to remission than celiac disease, because of the fact that it can be very difficult to track down all of the food intolerances, and it can take a long time for the intestines to heal. Some people with MC only have a few intolerances, and some have many. One thing that makes the project even more difficult, is the fact that once the gut becomes inflammed, it often becomes hupersensitive, and as you have noted, many, many foods can cause problems. We call those problematic foods that we are not actually intolerant of, "irritants", and they can include many food groups, but most of them seem to come from the categories of fruit and vegetables. Fruits can especially be a probem, due to the fact that we tend to be intolerant of fiber, and most of us are also sensitive to the sugar alcohols, (including the sorbitol found in varying amounts in most fruits). Most of us can tolerate certain vegetables, if they are very well cooked, at least in limited amounts, so as not to overdo the fiber intake.
Not only are NSAIDs a trigger for MC, but many other meds are, also, such as certain SSRIs, PPRIs, etc. If you are taking any meds, you may need to carefully consider them. Oral contraceptives and HRTs can be a problem, also, but other forms, (transdermal, or sublingual), usually do not cause diarrhea for someone with MC. Some of us are also sensitive to sulfites. Most of us are intolerant of gluten and casein, (the primary protein in dairy products). About half of us are also sensitive to soy. Be aware that for those of us who are sensitive to soy, especially, even the tiny amounts in vitamin supplements can trigger a reaction.
Chances are, your small intestinal damage from celiac disease has been resolved by now. MC is probably causing your symptoms, but that is sort of irrelevant, because the symptoms are pretty much the same. It generally takes longer for the intestines to heal from the inflammation of MC, than it takes for the villi of the small intestine to recover from gluten sensitive enteropathy. With diet alone, it often takes roughly a year to achieve remission from MC symptoms, and it can take much longer, (it took me a year and a half).
I don't know if your GI doc mentioned this option, but it is possible to suppress the inflammation of MC by taking Entocort EC, an encapsulated form of budesonide, which becomes activated when it reaches the ilium and the colon. By delaying activation, only about 10 to 15% of it is absorbed into the bloodstream, so that it does not pose anywhere near the risk of side effects of the other corticosteroids. It is very effective for most MC patients, and allows them to suppress the symptoms of MC much faster than by using the diet alone, especially in cases where it is difficult to pinpoint and avoid all of the intolerances involved. Many members with MC use it, (along with the diet), until their gut heals, and then, they are usually able to discontinue the Entocort, and maintain remission by diet alone, while some find it necessary to continue to take Entocort, as a maintenance med. Fine tuning individual diets, is the big trick, of course, and since we all seem to be different, no one diet seems to work for all. Everyone has to work out the details of their own treatment program, but we learn from each other, so by comparing notes here, the job can be made to be much simpler.
Unless you are using meds or supplements that contain some of your intolerances, you seem to be doing everything right, with your diet, so it's certainly possible that you may be very near to remission. Unfortunately, though, it's impossibly to say how close anyone is to remission, until it actually arrives. We can be one day away, and not realize it.
Again, welcome aboard, and please don't hesitate to ask any questions that come to mind - we will try to help in any way that we can, because we are all in this together.
Tex (Wayne)
Welcome to our internet family. We are seeing more and more members with a dual diagnosis of celiac disease and MC. Unless I am mistaken, most of them have lymphocytic colitis, rather than collagenous colitis. I suppose that's' irrelevant, though, since the symptoms, and the treatment, are the same, and it's possible for CC and LC to segue back and fourth, from one form to the other, and back. GI docs seem to be doing a better job of diagnosing both these diseases. I've seen speculation, by researchers, that anyone with celiac disease who has other food intolerances, (besides gluten), almost certainly has MC, also. If that's true, then there are probably a lot of celiacs around, with have undiagnosed MC.
In general, IMO, MC is a lot more difficult to bring to remission than celiac disease, because of the fact that it can be very difficult to track down all of the food intolerances, and it can take a long time for the intestines to heal. Some people with MC only have a few intolerances, and some have many. One thing that makes the project even more difficult, is the fact that once the gut becomes inflammed, it often becomes hupersensitive, and as you have noted, many, many foods can cause problems. We call those problematic foods that we are not actually intolerant of, "irritants", and they can include many food groups, but most of them seem to come from the categories of fruit and vegetables. Fruits can especially be a probem, due to the fact that we tend to be intolerant of fiber, and most of us are also sensitive to the sugar alcohols, (including the sorbitol found in varying amounts in most fruits). Most of us can tolerate certain vegetables, if they are very well cooked, at least in limited amounts, so as not to overdo the fiber intake.
Not only are NSAIDs a trigger for MC, but many other meds are, also, such as certain SSRIs, PPRIs, etc. If you are taking any meds, you may need to carefully consider them. Oral contraceptives and HRTs can be a problem, also, but other forms, (transdermal, or sublingual), usually do not cause diarrhea for someone with MC. Some of us are also sensitive to sulfites. Most of us are intolerant of gluten and casein, (the primary protein in dairy products). About half of us are also sensitive to soy. Be aware that for those of us who are sensitive to soy, especially, even the tiny amounts in vitamin supplements can trigger a reaction.
Chances are, your small intestinal damage from celiac disease has been resolved by now. MC is probably causing your symptoms, but that is sort of irrelevant, because the symptoms are pretty much the same. It generally takes longer for the intestines to heal from the inflammation of MC, than it takes for the villi of the small intestine to recover from gluten sensitive enteropathy. With diet alone, it often takes roughly a year to achieve remission from MC symptoms, and it can take much longer, (it took me a year and a half).
I don't know if your GI doc mentioned this option, but it is possible to suppress the inflammation of MC by taking Entocort EC, an encapsulated form of budesonide, which becomes activated when it reaches the ilium and the colon. By delaying activation, only about 10 to 15% of it is absorbed into the bloodstream, so that it does not pose anywhere near the risk of side effects of the other corticosteroids. It is very effective for most MC patients, and allows them to suppress the symptoms of MC much faster than by using the diet alone, especially in cases where it is difficult to pinpoint and avoid all of the intolerances involved. Many members with MC use it, (along with the diet), until their gut heals, and then, they are usually able to discontinue the Entocort, and maintain remission by diet alone, while some find it necessary to continue to take Entocort, as a maintenance med. Fine tuning individual diets, is the big trick, of course, and since we all seem to be different, no one diet seems to work for all. Everyone has to work out the details of their own treatment program, but we learn from each other, so by comparing notes here, the job can be made to be much simpler.
Unless you are using meds or supplements that contain some of your intolerances, you seem to be doing everything right, with your diet, so it's certainly possible that you may be very near to remission. Unfortunately, though, it's impossibly to say how close anyone is to remission, until it actually arrives. We can be one day away, and not realize it.
Again, welcome aboard, and please don't hesitate to ask any questions that come to mind - we will try to help in any way that we can, because we are all in this together.
Tex (Wayne)
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.
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Tay---and welcome ---grab ya 
and ask away--- I had MCC---now I can say I am *FINE*--which was with the help of a second GI--cus the first didnt know from beans!!!
Fortunately I didnt have to watch my food intake-just lactose for awhile---
My ailment was caused by my retired GP who had me on amoxacillan for a non-existing ailment---
I trusted his judgement but have learned to QUESTION!!!!And so the story goes----
I gather U are under the care of a GI---and how about a nutricionist to map out an eating plan for U---I did that for myself--which was of great help=-
Please do keep poppin in to gather more info---and to let us know how U are doing---
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control