I found this forum a little while ago, and have read through some of the posts. There are a lot!
Let me tell you some of my story, and ask a few questions for advice.
I was diagnosed with MC (LC) in March 2010, after almost 18 months of diarrhea. I think it may have been set off by an herbal supplement that I was taking in an effort to wean off hormone replacement therapy. I didn't want it to be the herbal thing, so I cut out various things from my diet, but none of it made any difference. When I finally stopped taking the herbal supplement, the diarrhea significantly reduced, but didn't stop.
My doctor didn't really know what to suggest after a course of Cipro, and a stool test that showed nothing wrong. She did suggest a colonoscopy.
In the meantime, I kept a diary of what I ate, and my BMs, looking for some correspondence. (My mom is lactose-intolerant, and also has trouble if she eats anything with seeds, nuts, etc. Her response is intestinal pain, and diarrhea.) My symptoms were just the watery diarrhea--no pain, gas, or bloating. I kept looking for something that was causing the D, but every time I would pick on a suspect food and eliminate it, the D was just the same. Most days I'd have diarrhea, occasionally not.
Last August, I found a detox diet on the Internet, and decided to try that. I cut out all gluten, diary, nuts, a bunch of different vegetables and fruit. I ate the basic allowable diet for a couple of weeks, then slowly added things back in one by one. The whole time there was just no change. Sometimes I'd have diarrhea, sometimes I wouldn't. I added back in the fruits, vegetables, bread, and last of all dairy. No change.
Finally, I got my insurance in order so I set up a colonoscopy. Since I had diarrhea, the doctor had me come in for a consultation first. When I told my sad tale of woe, he said it sounded like MC, and he would test for that. And it did turn out to be MC, which he said is not diet-related. That bore out my own attempts at identifying what was causing the problem. (I know you folks don't agree, but bear with me here.)
He put me on Entocort EC, which worked like a miracle! The very next day the diarrhea was gone, and my BMs were formed and solid, if a ghastly pale color. The doctor's office told me that was normal and would go away. So I took 9 mg of Entocort for 3 months, possible only because I ordered it on line. That is some expensive medicine!! It was wonderful. I felt normal, and gained back some of the weight I lost.
Three weeks after stopping the Entorcort, the D came back. The doctor said to go back on the Entocort, but it is so expensive that I really wanted another option. The doctor mentioned that one of his patients had some success controlling the D by eating coconut macaroons. He didn't know why it worked, but the lady said it did. I thought, what can I lose, so I bought some macaroons, and researched it on line. The People's Pharmacy told of a man who got great relief by eating 2 Archway macaroons a day. Well, I tried it, and it works for me. Most of the time I eat shredded unsweetened coconut instead of the cookies, because they are so sweet.
Using the coconut, most of the time my BMs are normal. I have had a day or two of D since I started eating coconut in mid-July. Then I take an immodium, and things are okay again.
So, now to my questions:
1. Have any of you tried coconut, and if so, what has your experience been?
2. If MC is actually caused by food intolerances, as all of you believe, do you think I am just prolonging or masking a problem by using coconut to control the symptoms?
My confusion lies with whether MC is something that can be cured. If it is incurable, and we are only looking to control the symptoms, then my eating coconut and not having D seems like a good plan. But if controlling the symptoms is only giving the underlying disease more time to get worse, then it seems like a bad plan, and I ought to eliminate the things that may be causing the disease.
I found the elimination diet posted by I think it was Jean. Eat only chicken, potatoes, bananas, and tea for two weeks, then try a little bit of each suspect food (gluten, dairy, soy, corn, rice, egg, yeast, citrus, coconut, chocolate, nuts). I thought about trying that, but I'm waffling since my D is actually under control now. I can't afford the Enterolab tests.
What do any of you folks who are more experienced with MC think? If I had never found this forum, I would have thought that the coconut is a wonderful way to deal with this disease. But since I found it, I'm wondering if I should pursue food intolerances.
Sorry that this is such a long post. If any of you stuck it out and read to the end, I'd love your advice.
advice request from a newbie
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
advice request from a newbie
Martha
Hi Martha,
Welcome to our internet family. Please don't apologize for writing a long post, because long posts are sometimes necessary to convey all the information that matters. Your questions are very good ones, and IMO, the bottom line is this. MC can be a very debilitating disease, and any way that you can control the symptoms is certainly acceptable. This disease has many causes, and it is influenced by genetics, many drugs, (both adversely and beneficially), hormones, and diet, of course, such that most of us have to work out a custom treatment program that fits our own particular situation, and our lifestyle.
There is no known cure for MC, because once the genes are triggered, the disease can flare at any time, if certain trigger foods or drugs are ingested. The symptoms can definitely be controlled, though, either by taking a maintenance drug, (at low dosage rates), or by modifying our diet, for the rest of our lives.
Generally speaking, the D is a result of inflammation in the mucosa of your intestines, (theoretically, according to the doctors, only in the colon, but we have found that many of us also have inflammation in our small intestine, and even in our stomach). Like Crohn's diseae, MC can affect any part of the GI tract, from mouth to Anus, (for example, many of us get mouth sores, when the disease is active).
Conversely, it can probably be safely assumed that if D is not present, the degree of inflammation present is below the threshold necessary to trigger a flare, (whether by diet, medication, or whatever). This implies that how one achieves remission from D is of minor importance. The main point is to get the D under control, and keep it there, by whatever means you prefer. Needless to say, uncontrolled D, is a serious health threat, due to the risk of dehydration, and malabsorption of nutrients, to say nothing of the misery and inconvenience of having to deal with it on a chronic basis. Additionally, there is a risk of permanent damage to the mucosal tissue, with long-term symptoms, plus the risk of developing non-Hodgkins lymphoma, if gluten-sensitivity is involved, (similar to the risk with celiac disease).
I believe that we have discussed the "coconut oil treatment" before, but I'm not aware of any other member who found it to be of any significant benefit. Therefore, if it truly is the difference between active MC and remission for you, then we are very interested in the details, and we hope that you will keep us updated on your progress.
IMO, (and remember that I am not a doctor), if your symptoms are under control, then you shouldn't have to worry about any adverse long-term effects that might be progressing without your knowledge. Here's why I feel that way:
For decades, the medical community warned celiacs that even asymptomatic patients, (those without any clinical symptoms), were at the same risk of developing non-Hodgkins lymphoma, as symptomatic celiacs, who continued to eat gluten. Recent research, however, shows that long-standing claim to be invalid. IOW, asymptomatic patients do not have the same risk of developing non-Hodgkins lymphoma as untreated celiacs, even if they continue to eat gluten. In fact, they have approximately the same risk as someone in the general population, (which is very low, of course).
The only significant elevated risk of cancer that I am aware of, that's related to MC, is the risk of non-Hodgkins lymphoma, and that is connected with gluten sensitivity, of course. According to research, approximately 65% of people with MC are sensitive to gluten. At least that is what has been documented, (by Dr. Kenneth Fine's research). Among the members of this board, though, better than 95% of us seem to be gluten sensitive, (as evidenced by both stool tests at Enterolab, and by our response to the GF diet.
So, if you happen to be one of the very few who are not sensitive to gluten, then there is no indicated risk at all. Even if you are gluten-sensitive, though, the risk is extremely low, so long as you keep your symptoms under control. Be aware that 2 weeks is very rarely long enough to achieve remission on the GF diet. Most of us require from 6 months to a year to achieve remission by diet alone, though a few see significant improvement in a couple of months or so, and a very rare few sometimes see remission within a week or so. Also, I was never able to tell that gluten made me sick, but after I cut it out of my diet for a year and a half, (and then cut out dairy, soy, corn, sugars, and fiber), my symptoms all went away. After allowing my gut to heal for almost 2 years, I was able to add almost everything back into my diet, (except for gluten, of course). Many members here are not so fortunate, though, and they have to avoid not only gluten, but also dairy products, and soy, and some have to avoid other foods, as well, on a permanent basis.
Gluten sensitivity can cause symptoms other than D. Some signs to look out for would be joint pain, muscle or abdominal pain, headaches, brain fog, balance issues, vision problems, etc. Gluten can cause many neurological symptoms, so if you have any of those symptoms, you may have to consider removing gluten, (and possibly all dairy products), from your diet, because, (speaking from experience), neurological damage caused by gluten can definitely be permanent, and it can be quite serious.
"Masking" your symptoms with coconut oil is certainly safer than masking them with a drug, so personally, I don't see anything wrong with your treatment. If it works, do it. Again, welcome aboard, and please keep us updated on your progress. Obviously, we learn from each other, here.
Tex (Wayne)
Welcome to our internet family. Please don't apologize for writing a long post, because long posts are sometimes necessary to convey all the information that matters. Your questions are very good ones, and IMO, the bottom line is this. MC can be a very debilitating disease, and any way that you can control the symptoms is certainly acceptable. This disease has many causes, and it is influenced by genetics, many drugs, (both adversely and beneficially), hormones, and diet, of course, such that most of us have to work out a custom treatment program that fits our own particular situation, and our lifestyle.
There is no known cure for MC, because once the genes are triggered, the disease can flare at any time, if certain trigger foods or drugs are ingested. The symptoms can definitely be controlled, though, either by taking a maintenance drug, (at low dosage rates), or by modifying our diet, for the rest of our lives.
Generally speaking, the D is a result of inflammation in the mucosa of your intestines, (theoretically, according to the doctors, only in the colon, but we have found that many of us also have inflammation in our small intestine, and even in our stomach). Like Crohn's diseae, MC can affect any part of the GI tract, from mouth to Anus, (for example, many of us get mouth sores, when the disease is active).
Conversely, it can probably be safely assumed that if D is not present, the degree of inflammation present is below the threshold necessary to trigger a flare, (whether by diet, medication, or whatever). This implies that how one achieves remission from D is of minor importance. The main point is to get the D under control, and keep it there, by whatever means you prefer. Needless to say, uncontrolled D, is a serious health threat, due to the risk of dehydration, and malabsorption of nutrients, to say nothing of the misery and inconvenience of having to deal with it on a chronic basis. Additionally, there is a risk of permanent damage to the mucosal tissue, with long-term symptoms, plus the risk of developing non-Hodgkins lymphoma, if gluten-sensitivity is involved, (similar to the risk with celiac disease).
I believe that we have discussed the "coconut oil treatment" before, but I'm not aware of any other member who found it to be of any significant benefit. Therefore, if it truly is the difference between active MC and remission for you, then we are very interested in the details, and we hope that you will keep us updated on your progress.
IMO, (and remember that I am not a doctor), if your symptoms are under control, then you shouldn't have to worry about any adverse long-term effects that might be progressing without your knowledge. Here's why I feel that way:
For decades, the medical community warned celiacs that even asymptomatic patients, (those without any clinical symptoms), were at the same risk of developing non-Hodgkins lymphoma, as symptomatic celiacs, who continued to eat gluten. Recent research, however, shows that long-standing claim to be invalid. IOW, asymptomatic patients do not have the same risk of developing non-Hodgkins lymphoma as untreated celiacs, even if they continue to eat gluten. In fact, they have approximately the same risk as someone in the general population, (which is very low, of course).
The only significant elevated risk of cancer that I am aware of, that's related to MC, is the risk of non-Hodgkins lymphoma, and that is connected with gluten sensitivity, of course. According to research, approximately 65% of people with MC are sensitive to gluten. At least that is what has been documented, (by Dr. Kenneth Fine's research). Among the members of this board, though, better than 95% of us seem to be gluten sensitive, (as evidenced by both stool tests at Enterolab, and by our response to the GF diet.
So, if you happen to be one of the very few who are not sensitive to gluten, then there is no indicated risk at all. Even if you are gluten-sensitive, though, the risk is extremely low, so long as you keep your symptoms under control. Be aware that 2 weeks is very rarely long enough to achieve remission on the GF diet. Most of us require from 6 months to a year to achieve remission by diet alone, though a few see significant improvement in a couple of months or so, and a very rare few sometimes see remission within a week or so. Also, I was never able to tell that gluten made me sick, but after I cut it out of my diet for a year and a half, (and then cut out dairy, soy, corn, sugars, and fiber), my symptoms all went away. After allowing my gut to heal for almost 2 years, I was able to add almost everything back into my diet, (except for gluten, of course). Many members here are not so fortunate, though, and they have to avoid not only gluten, but also dairy products, and soy, and some have to avoid other foods, as well, on a permanent basis.
Gluten sensitivity can cause symptoms other than D. Some signs to look out for would be joint pain, muscle or abdominal pain, headaches, brain fog, balance issues, vision problems, etc. Gluten can cause many neurological symptoms, so if you have any of those symptoms, you may have to consider removing gluten, (and possibly all dairy products), from your diet, because, (speaking from experience), neurological damage caused by gluten can definitely be permanent, and it can be quite serious.
"Masking" your symptoms with coconut oil is certainly safer than masking them with a drug, so personally, I don't see anything wrong with your treatment. If it works, do it. Again, welcome aboard, and please keep us updated on your progress. Obviously, we learn from each other, here.
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.
Dear Martha,
And sorry you have MC. Your story proves the adage that we are all different. Except that there are probably more similarities than differences. E.g. the Entocort working but than having a relapse when you come off it.
My own hunch would be that you are probably intolerant to certain foods and obviously the odds would be gluten, diary and possibly soy. You may have slight symptoms now but, IMHO, you may possibly be building up problems for later. It has taken me over a year on a diet to heal my gut enough to get some normality (without entocort). I often wonder how long it took to cause the damage before obvious symptoms presented??
Wishing you all the best in your search for the truth and a lasting solution. Here is the best place to do that search and get advice and support,
All the best, Ant
And sorry you have MC. Your story proves the adage that we are all different. Except that there are probably more similarities than differences. E.g. the Entocort working but than having a relapse when you come off it. My own hunch would be that you are probably intolerant to certain foods and obviously the odds would be gluten, diary and possibly soy. You may have slight symptoms now but, IMHO, you may possibly be building up problems for later. It has taken me over a year on a diet to heal my gut enough to get some normality (without entocort). I often wonder how long it took to cause the damage before obvious symptoms presented??
Wishing you all the best in your search for the truth and a lasting solution. Here is the best place to do that search and get advice and support,
All the best, Ant
Hi Martha,
Welcome to this amazing forum!
I use coconut for D, too. My late father used it after his gall bladder surgery caused chronic D. It helped him, so I gave it a try. It seemed to be helping, but I stopped it when I started using Asacol in early July, as I was becoming slightly constipated. Recently I began reducing my dosage of Asacol and reintroduced the coconut. I have no idea if it's helping or not - too soon to tell. Now I might have to stop eating it again because I had a blood test for food allergies and it showed that I'm sensitive to coconut
Welcome to this amazing forum!
I use coconut for D, too. My late father used it after his gall bladder surgery caused chronic D. It helped him, so I gave it a try. It seemed to be helping, but I stopped it when I started using Asacol in early July, as I was becoming slightly constipated. Recently I began reducing my dosage of Asacol and reintroduced the coconut. I have no idea if it's helping or not - too soon to tell. Now I might have to stop eating it again because I had a blood test for food allergies and it showed that I'm sensitive to coconut
Robbie
Hello Martha,
Many years ago I tried this for my "IBS". In fact, a neat little history lesson.... Archway used to be made in my home town of Fort Wayne, Indiana. You could purchase their day old cookies direct from the factory for next to nothing (it was right across from our airport) and my favorite used to by Rocky Road. I'm not sure who makes Archway now. I heard that a Canadian company may have purchased their name. I know Archway is no longer local (but then again, we don't and can't make anything in the US anymore). They used to give an Archway cookie to each arriving passenger at our little airport. They still give cookies away, but they are no longer Archway. I wish they gave away DeBrand chocolates instead!!! We have a really cool little gourmet chocolatier in Fort Wayne that is top notch.
But I digress, when I tried the coconut cookies, I didn't notice a response. In hindsight, maybe it was the gluten in the cookies that disagreed with me. But back then, I didn't know I was gluten sensitive back then. Do you know if these cookies contain gluten?
But I have just learned, opposite to what I formerly believed, that coconut oil DOES NOT necessarily have a laxative effect so I am going to add that to my diet to keep my weight up.
Welcome aboard!
Rich
Many years ago I tried this for my "IBS". In fact, a neat little history lesson.... Archway used to be made in my home town of Fort Wayne, Indiana. You could purchase their day old cookies direct from the factory for next to nothing (it was right across from our airport) and my favorite used to by Rocky Road. I'm not sure who makes Archway now. I heard that a Canadian company may have purchased their name. I know Archway is no longer local (but then again, we don't and can't make anything in the US anymore). They used to give an Archway cookie to each arriving passenger at our little airport. They still give cookies away, but they are no longer Archway. I wish they gave away DeBrand chocolates instead!!! We have a really cool little gourmet chocolatier in Fort Wayne that is top notch.
But I digress, when I tried the coconut cookies, I didn't notice a response. In hindsight, maybe it was the gluten in the cookies that disagreed with me. But back then, I didn't know I was gluten sensitive back then. Do you know if these cookies contain gluten?
But I have just learned, opposite to what I formerly believed, that coconut oil DOES NOT necessarily have a laxative effect so I am going to add that to my diet to keep my weight up.
Welcome aboard!
Rich
Thanks, everybody.
I'm planning to continue with the coconut, but I may try going gluten free to see if that makes me feel better generally. My husband is leaving on a trip, so this might be a good time to get started on the gluten free diet. Cutting out flour sounds easy enough, but finding the hidden gluten in everything else sounds like an overwhelming challenge.
Rich, I have a recipe for coconut macaroons that calls for only sweetened condensed milk, grated coconut, vanilla, and salt. The Archway macaroons, now manufactured by Lance Mfg., in Charlotte NC, contain wheat starch, so I guess that would be gluten. (I prefer eating unsweetened flaked coconut by itself.) An airport that gives free treats sounds fantastic!
I'm planning to continue with the coconut, but I may try going gluten free to see if that makes me feel better generally. My husband is leaving on a trip, so this might be a good time to get started on the gluten free diet. Cutting out flour sounds easy enough, but finding the hidden gluten in everything else sounds like an overwhelming challenge.
Rich, I have a recipe for coconut macaroons that calls for only sweetened condensed milk, grated coconut, vanilla, and salt. The Archway macaroons, now manufactured by Lance Mfg., in Charlotte NC, contain wheat starch, so I guess that would be gluten. (I prefer eating unsweetened flaked coconut by itself.) An airport that gives free treats sounds fantastic!
Martha
Hi Martha,
Please, please post your recipe!!!! I LOVE coconut!!!!!! I remember eating Mounds and Almond Joy all the time. I miss those candy bars.
It is unfortunate that Archway has wheat in it. Why do so many food companies find it so necessary to plug that ingredient into their products?
BTW, I still take a cookie from the volunteers at the airport when I come home. But now I give them to my associates who gives them to his 3 year old. Some people rudely push them away or laugh at them. I find that so rude. So, I always thank them for welcoming me home. Life is too short to be a $%^ all the time.
Regards,
Rich
Please, please post your recipe!!!! I LOVE coconut!!!!!! I remember eating Mounds and Almond Joy all the time. I miss those candy bars.
It is unfortunate that Archway has wheat in it. Why do so many food companies find it so necessary to plug that ingredient into their products?
BTW, I still take a cookie from the volunteers at the airport when I come home. But now I give them to my associates who gives them to his 3 year old. Some people rudely push them away or laugh at them. I find that so rude. So, I always thank them for welcoming me home. Life is too short to be a $%^ all the time.
Regards,
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
My recipe comes from the Rangoon International Cookbook, copyright 1954. You will have to experiment to find out how many cups of coconut a medium-sized coconut makes. I would guess two or three. Using flaked unsweetened coconut should be fine, right? The package just lists coconut as the ingredients.
Coconut Macaroons
1 can (1 1/3 cups) sweetened condensed milk
1 medium coconut
1/2 tsp. vanilla
1/8 tsp. salt
Grate coconut and dry slightly in oven.
Place milk in double boiler, add salt, cook until thick, stirring occasionally.
Cook milk slightly. Add coconut and vanilla.
Drop by teaspoonful on well-greased baking sheet, about 1 inch apart.
Bake in moderate oven 10-12 minutes until slightly brown but not over done or over dry.
Coconut Macaroons
1 can (1 1/3 cups) sweetened condensed milk
1 medium coconut
1/2 tsp. vanilla
1/8 tsp. salt
Grate coconut and dry slightly in oven.
Place milk in double boiler, add salt, cook until thick, stirring occasionally.
Cook milk slightly. Add coconut and vanilla.
Drop by teaspoonful on well-greased baking sheet, about 1 inch apart.
Bake in moderate oven 10-12 minutes until slightly brown but not over done or over dry.
Martha