Well, I am in the middle of my third flare in the last 18 months. They all have followed the same pattern - severe leg muscle cramps (primarily at night) and then a few days after these stop the big D starts. I have been following the paleo diet for several years. I have found that the more protein and less veggies I do, the better. I usually eat my veggies over cooked, to the point of mush. If I eat anything raw or semi raw it doesn't change from mouth to bottom. I have continued to keep a food/elimination diary and don't see any food changes, other than some days I do eat less veggies and fruit than others. Any suggestions????
Thanks,
Jan
Having problems
Moderators: Rosie, JFR, Dee, xet, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Having problems
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Matthew and Polly both follow the Paleo diet, but have still needed to modify it because of additional intolerances. I recall that Polly has recently eliminated eggs and Matthew doesn't eat nightshades, among other things.
You might find it helpful to look at the members' list of intolerances located here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255
BTW, this list doesn't include intolerances from newer members of the board. If anyone else would like to include their intolerances in the list, you can post them under the thread above and I will add them to the list, if it's OK with Tex. The fellow who maintained the list hasn't posted for some time now.
Gloria
You might find it helpful to look at the members' list of intolerances located here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255
BTW, this list doesn't include intolerances from newer members of the board. If anyone else would like to include their intolerances in the list, you can post them under the thread above and I will add them to the list, if it's OK with Tex. The fellow who maintained the list hasn't posted for some time now.
Gloria
You never know what you can do until you have to do it.
Thanks for that suggestion Gloria. I haven't added anything new in months and rarely eat out. I'll look at the links you gave me and relook at my food diary. I have been eating a few more eggs since I've cut back on the amount I've been cooking for dinner. Both DH and I have been trying to get a few extra pounds off.
Jan
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Gloria,
Sure, thanks for taking care of that.
Jan,
Hmmmmmm. The paleo diet doesn't leave much room for any of the common intolerances. I'll have to think about that a bit.
Tex
Sure, thanks for taking care of that.
Jan,
Hmmmmmm. The paleo diet doesn't leave much room for any of the common intolerances. I'll have to think about that a bit.
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.
Thanks Tex. I would appreciate any input you have. At one time I was eating boiled soybeans (they were kind of like boiled peanuts) as a substitute for more calorie laden snacks. I lost interest in those and haven't had them in over a month. There has been a little more stress in my life but not the earth shaking kind like losing a job or death of a loved one so I don't think that is it. It was nice to read Liz's response on the Main Message board that her joint and muscle pain came before a flare. My GI said they weren't related but my rheumatologist said they were.
Jan
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Jan,
I never cease to be surprised by how much better rheumatologists seem to understand MC, than GI docs do. Their standard response, when any patient asks about possible peripheral issues, is "that has nothing to do with MC", (or something to that effect). Well Duh! Why doesn't it? If they actually had to answer that question, their response would have to be, "because it doesn't mention that in this obsolete medical text that I always go by".
Leg and foot cramps are definitely connected with MC. I used to have severe leg, and especially foot cramps, mostly during the night, when I was reacting. I also bruised easily. With the easy bruising as a tip-off, I finally decided that malabsorption was catching up with me, and I was probably becoming short of certain vitamins and/of minerals. A few weeks after I started taking megadoses of vitamin B-12, and a multivitamin, (one similar to Centrum Silver), those symptoms started fading away. That won't stop your MC reactions, though, or at least, I wouldn't expect it to.
Do you eat nuts regularly? I had trouble with all of them, when I was healing. Others have found that certain nuts cause problems, on an individual basis.
Tex
I never cease to be surprised by how much better rheumatologists seem to understand MC, than GI docs do. Their standard response, when any patient asks about possible peripheral issues, is "that has nothing to do with MC", (or something to that effect). Well Duh! Why doesn't it? If they actually had to answer that question, their response would have to be, "because it doesn't mention that in this obsolete medical text that I always go by".
Leg and foot cramps are definitely connected with MC. I used to have severe leg, and especially foot cramps, mostly during the night, when I was reacting. I also bruised easily. With the easy bruising as a tip-off, I finally decided that malabsorption was catching up with me, and I was probably becoming short of certain vitamins and/of minerals. A few weeks after I started taking megadoses of vitamin B-12, and a multivitamin, (one similar to Centrum Silver), those symptoms started fading away. That won't stop your MC reactions, though, or at least, I wouldn't expect it to.
Do you eat nuts regularly? I had trouble with all of them, when I was healing. Others have found that certain nuts cause problems, on an individual basis.
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.
Tex,
I have eaten nuts off and on. Macadamia (sp) nuts bother me the most (and are my favorites) and almonds seem to give me the least problems. I don't eat as much as I used to because of the calories. I can't just eat the 10 or 15 that is considered a serving - it's more like 30 or 40 at a time. I do take my vitamins regularly as well as several supplements. The legs are still sore. I have always bruised easily so I can't use that as a signal that a flare is come. I have a followup appointment with my rheumatologist the end of the month and I'll talk to him again. I've been on a low dose of Lyrica for several months now. It has helped with the day to day aches and pains but has done nothing to help with this flare. This is the first flare since I started the Lyrica.
Today the dreaded D is much less and I've started adding some bland real food back in. I've been living on rice, chicken broth, herbal tea and an occasional banana since the D started about a week ago. Hopefully my energy will come back fairly quickly since this hasn't been a long flare.
Jan
I have eaten nuts off and on. Macadamia (sp) nuts bother me the most (and are my favorites) and almonds seem to give me the least problems. I don't eat as much as I used to because of the calories. I can't just eat the 10 or 15 that is considered a serving - it's more like 30 or 40 at a time. I do take my vitamins regularly as well as several supplements. The legs are still sore. I have always bruised easily so I can't use that as a signal that a flare is come. I have a followup appointment with my rheumatologist the end of the month and I'll talk to him again. I've been on a low dose of Lyrica for several months now. It has helped with the day to day aches and pains but has done nothing to help with this flare. This is the first flare since I started the Lyrica.
Today the dreaded D is much less and I've started adding some bland real food back in. I've been living on rice, chicken broth, herbal tea and an occasional banana since the D started about a week ago. Hopefully my energy will come back fairly quickly since this hasn't been a long flare.
Jan
Jan,
A lot of food intolerance experts point out that we crave the foods that we are intolerant of, and that seems to be generally true. Peanuts are my downfall. Luckily, they're not a major problem, but they do cause me to feel "off", and often they cause GI upset. A few don't bother me, but a lot of them do, and like you, I can't eat just a few.
I'm glad you're starting to feel better. A shorter flare is a good sign that you may be making progress, overall.
Tex
A lot of food intolerance experts point out that we crave the foods that we are intolerant of, and that seems to be generally true. Peanuts are my downfall. Luckily, they're not a major problem, but they do cause me to feel "off", and often they cause GI upset. A few don't bother me, but a lot of them do, and like you, I can't eat just a few.
I'm glad you're starting to feel better. A shorter flare is a good sign that you may be making progress, overall.
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.
Hi Jan,
Did you get a genetic test? I'm thinking that if you have the "double D1Q" pattern like me that you may have many additional intolerances like corn, yeast, eggs, etc. Of course, you could have tests done to find out about the specific foods.
All foods in the legume family (soybeans, peanuts, chickpeas, green beans, dried beans) can cause major problems for MCers because they contain lectins. Lectins open up the "gates" of the small intestine, allowing for larger food proteins to be absorbed into the body, thus causing an immunologic reaction (fatigue, muscle/joint aches, fever, etc.).
Have you checked your vitamins/supplements for hidden offenders? Also, you might find that tree nut butters are better tolerated than whole nuts.
Good luck, and keep us posted.
Love,
Polly
Did you get a genetic test? I'm thinking that if you have the "double D1Q" pattern like me that you may have many additional intolerances like corn, yeast, eggs, etc. Of course, you could have tests done to find out about the specific foods.
All foods in the legume family (soybeans, peanuts, chickpeas, green beans, dried beans) can cause major problems for MCers because they contain lectins. Lectins open up the "gates" of the small intestine, allowing for larger food proteins to be absorbed into the body, thus causing an immunologic reaction (fatigue, muscle/joint aches, fever, etc.).
Have you checked your vitamins/supplements for hidden offenders? Also, you might find that tree nut butters are better tolerated than whole nuts.
Good luck, and keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Dear Polly,
Thanks for the questions. This gives me something else to think about.
I haven't had the genetic testing. I'll relook at the Entrolab site and think about that one.
I have looked at my supplements and haven't found any offenders. It has been awhile. That was one of the first things I did after I joined this site. As Tex as pointed out somewhere else, sometimes things do get changed.
I'll have to think on the legume issue. You raised a good point there. I have not had any particular problems with them in the past. There for a while I was eating edamame instead of tree nuts to try and get some of the weight off. I stopped after a couple of bags over a month ago because I lost interest. They are pretty bland and I found I was eating too much salt to get any flavor. I didn't see any change is bms or how I was feeling either while eating them or after I stopped. This flare just hit me out of the blue. I'm leaning more towards eggs than anything.
Thanks again for giving me more to think about and check into.
Gratefully,
Jan
Thanks for the questions. This gives me something else to think about.
I haven't had the genetic testing. I'll relook at the Entrolab site and think about that one.
I have looked at my supplements and haven't found any offenders. It has been awhile. That was one of the first things I did after I joined this site. As Tex as pointed out somewhere else, sometimes things do get changed.
I'll have to think on the legume issue. You raised a good point there. I have not had any particular problems with them in the past. There for a while I was eating edamame instead of tree nuts to try and get some of the weight off. I stopped after a couple of bags over a month ago because I lost interest. They are pretty bland and I found I was eating too much salt to get any flavor. I didn't see any change is bms or how I was feeling either while eating them or after I stopped. This flare just hit me out of the blue. I'm leaning more towards eggs than anything.
Thanks again for giving me more to think about and check into.
Gratefully,
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Tex,
I just read your post about leg and foot cramps being caused by MC. I have had a lot of problems with leg or foot cramps. I had thought that they were caused by the statins as the information on them usually lists muscle pain or weakness as a possible side effect. At this time I'm not taking the Lipitor. The doctor had me on 80 mg Lipitor daily. I have heard too many bad things about Lipitor so I decided I would not take them anymore. I have been taking Red Yeast Rice and I hope that helps because I've had a problem with high cholesterol for many years. I plan to see my doctor and ask about going on Entocort and hope that helps with the D. I take a multivitamin plus a lot of other individual vitamins.
I'm also wondering about something else. I am also casein intolerant. When I was very young apparently I was allergic to cow's milk so my father bought a goat so that I could have goat's milk. Is goat milk and cheese okay to eat or do they also contain casein? An additional thought - when I was 2 or 3 years old my dad had to quit his dairy farm as all 18 of his cows got Bang's Disease. They all had to be destroyed. Is it possible that I could have had a problem if I drank the milk (before they discovered it.) If so, would there be any residual effect? I remember my parents telling me that I got very sick when I was around two years old and my personality changed after that. The doctors never knew what the problem was. I don't think anyone has any answers to this situation. It's probably not worth being concerned about, but I'm just curious.
Jean
I just read your post about leg and foot cramps being caused by MC. I have had a lot of problems with leg or foot cramps. I had thought that they were caused by the statins as the information on them usually lists muscle pain or weakness as a possible side effect. At this time I'm not taking the Lipitor. The doctor had me on 80 mg Lipitor daily. I have heard too many bad things about Lipitor so I decided I would not take them anymore. I have been taking Red Yeast Rice and I hope that helps because I've had a problem with high cholesterol for many years. I plan to see my doctor and ask about going on Entocort and hope that helps with the D. I take a multivitamin plus a lot of other individual vitamins.
I'm also wondering about something else. I am also casein intolerant. When I was very young apparently I was allergic to cow's milk so my father bought a goat so that I could have goat's milk. Is goat milk and cheese okay to eat or do they also contain casein? An additional thought - when I was 2 or 3 years old my dad had to quit his dairy farm as all 18 of his cows got Bang's Disease. They all had to be destroyed. Is it possible that I could have had a problem if I drank the milk (before they discovered it.) If so, would there be any residual effect? I remember my parents telling me that I got very sick when I was around two years old and my personality changed after that. The doctors never knew what the problem was. I don't think anyone has any answers to this situation. It's probably not worth being concerned about, but I'm just curious.
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Jean,
Yes, Lipitor has a history of causing leg and foot cramps, so it certainly could have been a major part of your problem, while you were taking it.
That's a very interesting question about Bang's disease, (Brucelosis). I would say that the odds were extremely high that you did indeed have the disease when you were so sick at the age of 2. Here's why I feel that way:
The disease is extremely infective. It's so infective that laboratory workers trying to culture the Brucella bacteria in petri dishes have a very high risk of contracting the disease, just due to being around it, unless they take extreme precautions. The U. S. government developed several types of Brucellosis agents for use as biological weapons during WWII, (including the Bovine strain), but none of it was ever used, that I'm aware of. It had a high morbidity rate, (for several months), but a low mortality rate, so it lost favor, and anthrax was pursued, instead.
The only way that most of us in the dairy or ranching business ever became aware of the disease in our herds, (except for the government-sponsored testing program, of course), was when we noticed spontaneous abortions occurring. IOW, a cow could have had the disease for a long time before anyone would have suspected it, because most of the other symptoms, such as the undulant fever that accompanies it, would not likely be noticed in cattle. Also, only about 40 to 80 % of infected cows abort, so early on, in the progression of the disease in the heard, depending on the "luck of the draw", it's possible that several cows could successfully calve, and produce milk, before anyone even became suspicious that the herd might be infected.
What are the long-term implications for someone who had the disease, and it ran it's course without treatment? I don't know if anyone really knows the answer to this question, and probably there were/are different outcomes for different individuals. Some experts say that the disease can last "as long as a year", when untreated, and others mention chronic symptoms. Since the symptoms are flu-like, they could easily be misinterpreted as the result of a case of the flu. If any chronic symptoms were to become "permanent", I would suspect that they would almost surely present in the form of joint pain, back ache, fatigue, etc., and possibly recurrent fevers. IOW, the symptoms might be similar to chronic fatigue syndrome, or possibly fibromyalgia.
Tex
Yes, Lipitor has a history of causing leg and foot cramps, so it certainly could have been a major part of your problem, while you were taking it.
That's a very interesting question about Bang's disease, (Brucelosis). I would say that the odds were extremely high that you did indeed have the disease when you were so sick at the age of 2. Here's why I feel that way:
The disease is extremely infective. It's so infective that laboratory workers trying to culture the Brucella bacteria in petri dishes have a very high risk of contracting the disease, just due to being around it, unless they take extreme precautions. The U. S. government developed several types of Brucellosis agents for use as biological weapons during WWII, (including the Bovine strain), but none of it was ever used, that I'm aware of. It had a high morbidity rate, (for several months), but a low mortality rate, so it lost favor, and anthrax was pursued, instead.
The only way that most of us in the dairy or ranching business ever became aware of the disease in our herds, (except for the government-sponsored testing program, of course), was when we noticed spontaneous abortions occurring. IOW, a cow could have had the disease for a long time before anyone would have suspected it, because most of the other symptoms, such as the undulant fever that accompanies it, would not likely be noticed in cattle. Also, only about 40 to 80 % of infected cows abort, so early on, in the progression of the disease in the heard, depending on the "luck of the draw", it's possible that several cows could successfully calve, and produce milk, before anyone even became suspicious that the herd might be infected.
What are the long-term implications for someone who had the disease, and it ran it's course without treatment? I don't know if anyone really knows the answer to this question, and probably there were/are different outcomes for different individuals. Some experts say that the disease can last "as long as a year", when untreated, and others mention chronic symptoms. Since the symptoms are flu-like, they could easily be misinterpreted as the result of a case of the flu. If any chronic symptoms were to become "permanent", I would suspect that they would almost surely present in the form of joint pain, back ache, fatigue, etc., and possibly recurrent fevers. IOW, the symptoms might be similar to chronic fatigue syndrome, or possibly fibromyalgia.
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.
Hi Jean and 
to the Cave!
I am also casein intolerant, and I cannot tolerate sheep or goat milk/cheese. I had read that some people could tolerate them, but alas, I am not one of them. Have you carefully checked all of your vitamins to make sure they do not have any gluten/casein?
Low calcium can also cause foot/leg cramps. Are your values OK? Even if we consume plenty of calcium/vitamin D/minerals/etc. we can still be deficient because of the malabsorption that accompanies MC. Also, we can lose lots of water/electrolytes with the constant D, so it's very important to replace them. Before remission I made it a point to drink several glasses of water before I went running.
Interesting about the brucellosis. Tex and I believe that there may be an underlying infectious component to MC that has yet to be fully uncovered.
Love,
Polly
to the Cave!I am also casein intolerant, and I cannot tolerate sheep or goat milk/cheese. I had read that some people could tolerate them, but alas, I am not one of them. Have you carefully checked all of your vitamins to make sure they do not have any gluten/casein?
Low calcium can also cause foot/leg cramps. Are your values OK? Even if we consume plenty of calcium/vitamin D/minerals/etc. we can still be deficient because of the malabsorption that accompanies MC. Also, we can lose lots of water/electrolytes with the constant D, so it's very important to replace them. Before remission I made it a point to drink several glasses of water before I went running.
Interesting about the brucellosis. Tex and I believe that there may be an underlying infectious component to MC that has yet to be fully uncovered.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Wow, Tex
Thank you for your response! I have not very often mentioned Bangs, Brucellosis, or Undulent Fever, but the few times I have it seems that no one has any knowledge of it at all. My parents had briefly talked about losing the cows plus the fact that I had been quite ill, but not in the same context. I guess I kind of put the facts together and have wondered about it. It seems pointless to be concerned if it was just a passing thing, but if there was any lingering problem then it's good to know that. No medical doctor has suggested Fibromyalgia but a chiropractor told me that I have it. Pressing each of those trigger points really produces pain so I believe he is right. I do also have a lot of fatigue but that could be from the MC and who knows what all from the meds I take. I also take meds for Diabetes, Blood Pressure, Cholesterol, Gerd, and Allergies. (Some people just can't pass anything up! :-) ) I also have had backaches quite a bit. I have gone to chiropractors off and on through the years.
I am thinking now that I was probably sick before the cows were diagnosed and so the doctors wouldn't have figured it out. Oh if only I had asked my dad more about it at the time. Now there isn't anyone left that would know. BTW, when my dad lost his cows he secured a job with Rural Rehabilitation as County Supervisor. The name changed to Farm Security Administration and then later to Farmer's Home Administration. He had gone to the University of Minnesota and had a degree in Agriculture. We did continue to live on the farm even though he was no longer farming the land. We did take in the hay though and during World War II we had a cow for awhile.
I do so appreciate this forum. I'm reading as much as I can and have gotten much more help than I could ever expect from the doctors. I have been told on occasion for many years that I have Colitis or also that I had IBS. I've tried immodium or other meds which haven't seemed to help much. I'm hoping I can eventually feel better. I take lots of vitamins because I don't think I get the food value I should with everything passing through so fast. At least I now know why I have the D.
Thanks again,
Jean
Thank you for your response! I have not very often mentioned Bangs, Brucellosis, or Undulent Fever, but the few times I have it seems that no one has any knowledge of it at all. My parents had briefly talked about losing the cows plus the fact that I had been quite ill, but not in the same context. I guess I kind of put the facts together and have wondered about it. It seems pointless to be concerned if it was just a passing thing, but if there was any lingering problem then it's good to know that. No medical doctor has suggested Fibromyalgia but a chiropractor told me that I have it. Pressing each of those trigger points really produces pain so I believe he is right. I do also have a lot of fatigue but that could be from the MC and who knows what all from the meds I take. I also take meds for Diabetes, Blood Pressure, Cholesterol, Gerd, and Allergies. (Some people just can't pass anything up! :-) ) I also have had backaches quite a bit. I have gone to chiropractors off and on through the years.
I am thinking now that I was probably sick before the cows were diagnosed and so the doctors wouldn't have figured it out. Oh if only I had asked my dad more about it at the time. Now there isn't anyone left that would know. BTW, when my dad lost his cows he secured a job with Rural Rehabilitation as County Supervisor. The name changed to Farm Security Administration and then later to Farmer's Home Administration. He had gone to the University of Minnesota and had a degree in Agriculture. We did continue to live on the farm even though he was no longer farming the land. We did take in the hay though and during World War II we had a cow for awhile.
I do so appreciate this forum. I'm reading as much as I can and have gotten much more help than I could ever expect from the doctors. I have been told on occasion for many years that I have Colitis or also that I had IBS. I've tried immodium or other meds which haven't seemed to help much. I'm hoping I can eventually feel better. I take lots of vitamins because I don't think I get the food value I should with everything passing through so fast. At least I now know why I have the D.
Thanks again,
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Hi Polly,
Thanks for your response. I have had Dexa scans done and thankfully they are okay. There is a concern because of the Arimidex that I take. Also I had chemo about a year and a half ago. I am taking Shaklee Osteomatrix - four capsules per day. A few years back I had a scan that said mild to moderate bone density problem, so hopefullly I'm on the right track there. My chiropractor tried to sell me some supplements that he thought were good. There were some ingredients there that appeared to be gluten so I had to pass on them. It's those hidden ingredients that are difficult and can cause problems. I'm also taking extra Vit D. But you are right about the malabsorption. I do try to drink a lot of water but sometimes I get busy and forget to do it. I always seem to be carrying water with me. I have a good reverse osmosis system at home so I always have good drinking water.
I'm wondering if I have to quit eating goat cheese. I have been drinking decaf coffee because my doctor says I should not have caffeinated coffee but it seems I remember years ago that the decaf was harder to tolerate. I have friends that cannot drink the decaf. I hate to give up coffee entirely. I rarely ever drink pop and I do not drink any alcohol. Guess I have to have some vices ???
Love,
Jean
Thanks for your response. I have had Dexa scans done and thankfully they are okay. There is a concern because of the Arimidex that I take. Also I had chemo about a year and a half ago. I am taking Shaklee Osteomatrix - four capsules per day. A few years back I had a scan that said mild to moderate bone density problem, so hopefullly I'm on the right track there. My chiropractor tried to sell me some supplements that he thought were good. There were some ingredients there that appeared to be gluten so I had to pass on them. It's those hidden ingredients that are difficult and can cause problems. I'm also taking extra Vit D. But you are right about the malabsorption. I do try to drink a lot of water but sometimes I get busy and forget to do it. I always seem to be carrying water with me. I have a good reverse osmosis system at home so I always have good drinking water.
I'm wondering if I have to quit eating goat cheese. I have been drinking decaf coffee because my doctor says I should not have caffeinated coffee but it seems I remember years ago that the decaf was harder to tolerate. I have friends that cannot drink the decaf. I hate to give up coffee entirely. I rarely ever drink pop and I do not drink any alcohol. Guess I have to have some vices ???
Love,
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!