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Hi. I'm just wondering about what people post as their food intolerance. I took the enterolab test and only tested for a sensitivity to gluten (14) and possible corn. Everything else was really low. I am trying to achieve remission without medication. I am currently on the scd diet and very slowly introducing foods. I have already been off gluten and dairy for 6 weeks and all other grains and sugar for 2 weeks. The only improvement I've seen recently is that my joint pain is a little better. I still have 4-5 Bm's a day and a lot of pain after I eat and lately a lot of gas. How do people figure out their intolerances. Is this different then a sensitivity? I am pretty sure I got the CC from taking accutane so why would that mean I suddenly have a sensitivity to gluten if I never had it before? Does that mean it is temporary? Do most people find they can add back foods after they have achieved remission? Can you only add back those you did not test to have antibodies for? If anyone can help me I would really appreciate it. Also I would like to know on average how long it took for some of you to acheive remission through diet alone.
Thanks
food intolerances
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food intolerances
Belle
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Belle
read some of the posts in the Success Stories section.
For me, diet and natural therapy support, i achieved remission for the MC in under 2 years. (verified by colonscopy and biopsies)
since then i have been having histamine ?? mast cell reactions. There was evidence of the histamine reaction in the same report that confirmed the MC was in remission, but the GI specialist did not think it was relevant or worth discussion
All the changes, the patience and tenancity are definately worth the effort!
read some of the posts in the Success Stories section.
For me, diet and natural therapy support, i achieved remission for the MC in under 2 years. (verified by colonscopy and biopsies)
since then i have been having histamine ?? mast cell reactions. There was evidence of the histamine reaction in the same report that confirmed the MC was in remission, but the GI specialist did not think it was relevant or worth discussion
All the changes, the patience and tenancity are definately worth the effort!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
When the genes that predispose to MC are initially triggered, the genes that predispose to gluten-sensitivity are usually triggered at the same time. Gluten-sensitivity is virtually always permanent, unless your DNA is somehow changed, in the future.Belle wrote:so why would that mean I suddenly have a sensitivity to gluten if I never had it before? Does that mean it is temporary?
Fiber, and carbohydrates, (and sugars in general), can usually be added back into the diet, but the proteins to which we produce antibodies, can rarely be safely eaten, in the future. The single exception is yeast - virtually everyone can tolerate yeast, after they achieve remission. Some people can tolerate eggs, especially in baked goods, after their intestines heal. Gluten-sensitivity is forever, though, and so is casein, if we initially test sensitive to it.Belle wrote:Do most people find they can add back foods after they have achieved remission? Can you only add back those you did not test to have antibodies for?
You should see more improvement within the next month or so, but it takes time for the gut to heal - that can't be overemphasized.
It took me a year and a half to reach remission, but that's because I waited a year and a half to eliminate all the other foods that I was reacting to, besides gluten. Most members here see remission in 6 months to a year, without Entocort. With Entocort, the D can be stopped much faster, usually in less than 6 to 8 weeks. Everyone has a different time to remission, though. If you are seeing improvement in your joint pain, then you are definitely improving, and you will probably see more improvement, soon.
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.
Belle, I'm still trying to figure out my own intolerances too and this is a great place to get information. I've been GF/DF since November and SF/EF & no legumes since mid January and like you still have D. Today was my first day of just eating a few foods to hopefully get a better handle on what I can and can't eat. Today's menu was turkey, chicken broth, mashed potatoes (nothing added) and banana. I'm going to stick with that for the next few days and see if the D decreases from the 4-6x a day. I've got my fingers crossed and hopefully then I can add something new in a while. I rarely have pains associated with CC which makes it difficult to pinpoint offending foods. I happily drank soy milk daily thinking I was doing something healthy and it turns out my Enterolab tests show soy is problematic.
Good luck and I'd love to hear what works for you.
Deb
Good luck and I'd love to hear what works for you.
Deb
Thanks everyone for your help. My menu has been pretty limited now too. I am working with a nutritionist who helps you with the scd diet and tells you what foods to add and when and how to see what is bothering you. It is very slow progress and I wish I could see the light at the end of the tunnel. I'm wondering why Dr.'s seem to consider ulceritive colitis a worse disease as the inflammation is deeper, but anyone I spoke to who had that type of colitis has seemed to manage to achieve remission sooner and for longer and did not have joint pain. They also never had to completely eliminate foods. Can anyone explain that to me? Just wondering
Belle
Ulcerative colitis starts at the distal end of the digestive tract, IOW, the anus, and rectum, and sometimes progresses into the sigmoid colon. Therefore, even though it does significant damage, (it usually involves bleeding), it normally affects only a relatively small percentage of the colon. MC, on the other hand, like Crohn's disease, can affect any part of the GI tract, and it almost always affects at least most of colon and at least the terminal ileum, (the lower third of the small intestine).Belle wrote:I'm wondering why Dr.'s seem to consider ulceritive colitis a worse disease as the inflammation is deeper, but anyone I spoke to who had that type of colitis has seemed to manage to achieve remission sooner and for longer and did not have joint pain. They also never had to completely eliminate foods. Can anyone explain that to me? Just wondering
Incidentally, we have 2 or 3 members who have UC, and who control their symptoms by diet alone. Most patients with UC don't "have" to eliminate foods, simply because just as our doctors tell us that diet has nothing to do with MC, their doctors advise them that diet has nothing to do with UC, and they believe their doctors. Unfortunately, they don't have a discussion board that specializes in treating UC by diet control. The ones who know better, control their symptoms by diet.
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.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi, Belle!
Glad you found the forum! Best place in the world to get answers. Don't be afraid to ask questions--everyone here is so willing to help!
IMO, the pain after eating is a definite tip-off. For me, the pain was as bad as, or even worse than, the D. However, after paring down my diet, I don't have that pain most days. If I do, it's a signal that I've eaten something I shouldn't, even if I don't have D.
I never have pain due to gluten reactions--gurgling, fatigue, depression, and D, but not pain. The pain is from casein, potatoes, and soy. So I'd say the pain indicates that you have another intolerance you haven't discovered yet.
Are you keeping a food diary? This is the best way to determine what you're reacting to. Write down everything you eat or drink, including medications and supplements, when you ate it, and also any symptoms you have and the times you had them. That can be BM's, pain, fatigue, brain fog--anything. Over time you'll start to see a correlation between what you ate and your symptoms.
Whether you test positive for a certain food or not, the definition of an intolerance is something that messes with your system. I have never been tested for an intolerance to corn, potatoes, or MSG, but I know I react to them, so they're on my list!
Good luck with your detective work, and keep us posted on the results!
Glad you found the forum! Best place in the world to get answers. Don't be afraid to ask questions--everyone here is so willing to help!
IMO, the pain after eating is a definite tip-off. For me, the pain was as bad as, or even worse than, the D. However, after paring down my diet, I don't have that pain most days. If I do, it's a signal that I've eaten something I shouldn't, even if I don't have D.
I never have pain due to gluten reactions--gurgling, fatigue, depression, and D, but not pain. The pain is from casein, potatoes, and soy. So I'd say the pain indicates that you have another intolerance you haven't discovered yet.
Are you keeping a food diary? This is the best way to determine what you're reacting to. Write down everything you eat or drink, including medications and supplements, when you ate it, and also any symptoms you have and the times you had them. That can be BM's, pain, fatigue, brain fog--anything. Over time you'll start to see a correlation between what you ate and your symptoms.
Whether you test positive for a certain food or not, the definition of an intolerance is something that messes with your system. I have never been tested for an intolerance to corn, potatoes, or MSG, but I know I react to them, so they're on my list!
Good luck with your detective work, and keep us posted on the results!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hi Belle,
First I have to really compliment you on working through this with diet alone! When I first came to this board around September there were a fair amount of people posting who had got better by diet alone. My guess is they are doing pretty well and thus not posting now. I had extremely heavy pressure from my employer and friends to get on drugs and was not able to withstand the pressure from my employer and friends to try diet alone. My general opinion is that perhaps someone going diet alone and someone going Entocort and diet will be at about the same place 6 months out but the person that goes diet alone I belive has a huge edge in that they are going to be much more confident in what they can eat. For me who went the Entocort and diet option I'm kind of stressed out about what to eat although I'm doing overall pretty well.
Take a look at my recent somewhat lengthy post to Deb13 it will give you an idea of where someone can be 5-1/2 months out. Pretty much as long as I'm not eating nuts, popcorn or packaged foods I'm doing pretty well. In terms of BM I would say one per day, normal-ish although softer than normal and virtually no pain. I don't think I'm anywhere near remission yet. I'm not really sure about time frame for remission. I saw your age so you have youth to some extent on your side and suspect you will bounce back quicker than say some of the older posters.
Reduced joint pain was one of my first indicators that I was getting better so you are heading in the right direction. Healing does not come fast with this disease it takes awhile.
In dealing with the Doc's early on last year I kind of got the feeling that because I did not have "blood in stool" and I only had D 7 x per day that it was not serious. I had 3 different Doc's tell me that D 7 x per day is not D....it is "loose stool." As Tex has said b/f, the GI docs consider D maybe a minor inconvenience. UC and Crohn's are "yuckier" diseases, i.e. have blood in stool and my layman's opinion is that these diseases are treated by the GI docs to be much more serious than MC just b/c they are "yuckier."
My girlfriend's stepson got UC from accutane. He had numerous hospitilizations, numerous drugs and ended up having the three part surgery to disconnect and then reconnect everything over a series of two years. My girlfriend is actually a dietician but diet was never discussed as part of his treatment. I asked her if they tried diet as form of treatment and she said that from the getgo his guts were like "hamburger meat" and that he did not respond to any of the drugs which was why when the Doc's wanted to put him on Remicade which has high incidence of cancer as side effect they moved on to surgeries. My HR director has Crohns and has also had the 3 part surgery. She was telling me I needed to eat toast and mashed potatos and by this time I had already found this forum and new to STAY AWAY FROM TOAST and that protein and cooked veggies would go a long way in helping me. So my experience is that with all of these diseases there is a lot of mis information or non information about diet effects and treatment.
This forum overall is fairly upbeat and positive because basically people get better over time. I lurked in the UC and Crohns forums when I was tapering off of entocort to see what those folks had to say as Entocort is also prescribed for those with UC and Crohns. Those forums are dark, dark, places. With MC you will get better with diet changes alone or diet and medication.
Also you might talk to your dietitian about the gas situation. She might be able to steer you to some veggies/fruits with less gas. However, I seem to recall in the first 10-12 weeks I did have a lot of gas and "wet gas" so maybe it is a part of healing. I'm taking 3 beanos when I eat the broccoli soup that I make and have no gas after taking the beanos so you may want to ask the dietition about that too. Kind of looking back I do kind of remember having a lot of gas I would say the first 8-10 weeks that I was healing....way more than what you would have normally have but I don't have gas now so don't get discouraged.
I know that I have not answered a lot of your questions but maybe some of this will be helpful. I'm still kind of a newbie. Also my recent Deb13 post might help.
Best wishes, Brandy
First I have to really compliment you on working through this with diet alone! When I first came to this board around September there were a fair amount of people posting who had got better by diet alone. My guess is they are doing pretty well and thus not posting now. I had extremely heavy pressure from my employer and friends to get on drugs and was not able to withstand the pressure from my employer and friends to try diet alone. My general opinion is that perhaps someone going diet alone and someone going Entocort and diet will be at about the same place 6 months out but the person that goes diet alone I belive has a huge edge in that they are going to be much more confident in what they can eat. For me who went the Entocort and diet option I'm kind of stressed out about what to eat although I'm doing overall pretty well.
Take a look at my recent somewhat lengthy post to Deb13 it will give you an idea of where someone can be 5-1/2 months out. Pretty much as long as I'm not eating nuts, popcorn or packaged foods I'm doing pretty well. In terms of BM I would say one per day, normal-ish although softer than normal and virtually no pain. I don't think I'm anywhere near remission yet. I'm not really sure about time frame for remission. I saw your age so you have youth to some extent on your side and suspect you will bounce back quicker than say some of the older posters.
Reduced joint pain was one of my first indicators that I was getting better so you are heading in the right direction. Healing does not come fast with this disease it takes awhile.
In dealing with the Doc's early on last year I kind of got the feeling that because I did not have "blood in stool" and I only had D 7 x per day that it was not serious. I had 3 different Doc's tell me that D 7 x per day is not D....it is "loose stool." As Tex has said b/f, the GI docs consider D maybe a minor inconvenience. UC and Crohn's are "yuckier" diseases, i.e. have blood in stool and my layman's opinion is that these diseases are treated by the GI docs to be much more serious than MC just b/c they are "yuckier."
My girlfriend's stepson got UC from accutane. He had numerous hospitilizations, numerous drugs and ended up having the three part surgery to disconnect and then reconnect everything over a series of two years. My girlfriend is actually a dietician but diet was never discussed as part of his treatment. I asked her if they tried diet as form of treatment and she said that from the getgo his guts were like "hamburger meat" and that he did not respond to any of the drugs which was why when the Doc's wanted to put him on Remicade which has high incidence of cancer as side effect they moved on to surgeries. My HR director has Crohns and has also had the 3 part surgery. She was telling me I needed to eat toast and mashed potatos and by this time I had already found this forum and new to STAY AWAY FROM TOAST and that protein and cooked veggies would go a long way in helping me. So my experience is that with all of these diseases there is a lot of mis information or non information about diet effects and treatment.
This forum overall is fairly upbeat and positive because basically people get better over time. I lurked in the UC and Crohns forums when I was tapering off of entocort to see what those folks had to say as Entocort is also prescribed for those with UC and Crohns. Those forums are dark, dark, places. With MC you will get better with diet changes alone or diet and medication.
Also you might talk to your dietitian about the gas situation. She might be able to steer you to some veggies/fruits with less gas. However, I seem to recall in the first 10-12 weeks I did have a lot of gas and "wet gas" so maybe it is a part of healing. I'm taking 3 beanos when I eat the broccoli soup that I make and have no gas after taking the beanos so you may want to ask the dietition about that too. Kind of looking back I do kind of remember having a lot of gas I would say the first 8-10 weeks that I was healing....way more than what you would have normally have but I don't have gas now so don't get discouraged.
I know that I have not answered a lot of your questions but maybe some of this will be helpful. I'm still kind of a newbie. Also my recent Deb13 post might help.
Best wishes, Brandy
Hi Belle,
I agree with Cynthia. A food diary/log is a must.
Try one new food at a time and if you experience pain add it to your "avoid" list. Here is mine as an example:
Avoid foods
Mushrooms
Spicy food
Artificial Sweeteners
Chocolate
Caffeine
Wheat, Barley, Rye
Tomatoes
Soft Cheese
Sodas
Spinach
Cabbage
Popcorn
Fruit w/seeds
Pork n’ Beans(awful gas)
Raw fruit and veggies
corn
Cauliflower
Broccoli
Brussels sprouts
String Beans
Pimento Cheese
Avoid Medicine
Ibuprofen/aspirin
Anti-inflammatory meds
I agree with Cynthia. A food diary/log is a must.
Try one new food at a time and if you experience pain add it to your "avoid" list. Here is mine as an example:
Avoid foods
Mushrooms
Spicy food
Artificial Sweeteners
Chocolate
Caffeine
Wheat, Barley, Rye
Tomatoes
Soft Cheese
Sodas
Spinach
Cabbage
Popcorn
Fruit w/seeds
Pork n’ Beans(awful gas)
Raw fruit and veggies
corn
Cauliflower
Broccoli
Brussels sprouts
String Beans
Pimento Cheese
Avoid Medicine
Ibuprofen/aspirin
Anti-inflammatory meds
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Hi Belle,
You've been on my mind. For me early on it was very difficult to figure out intolerances. The first three months after D stopped I still had gurgling, gas and wet farts from almost everything and I was eating a "narrow" diet at that time. Last June I was able to figure out that gatorade/sports drinks were a problem for me so I stopped them. In November I was able to figure out corn pasta was a problem and three weeks ago I was able to figure out that apple juice, rice and quinoa are problems for me. So far the only way I've been able to figure this out was dizziness after eating the food. Hopefully this maybe helps, just wanted to pass along that early on it was tough to figure much out. Brandy
You've been on my mind. For me early on it was very difficult to figure out intolerances. The first three months after D stopped I still had gurgling, gas and wet farts from almost everything and I was eating a "narrow" diet at that time. Last June I was able to figure out that gatorade/sports drinks were a problem for me so I stopped them. In November I was able to figure out corn pasta was a problem and three weeks ago I was able to figure out that apple juice, rice and quinoa are problems for me. So far the only way I've been able to figure this out was dizziness after eating the food. Hopefully this maybe helps, just wanted to pass along that early on it was tough to figure much out. Brandy
Hi Brandy,
I just stopped taking Entocort 2 weeks ago and it's been easier to see which foods I can't tolerate. The Entocort seemed to mask reactions. Without Entocort, I would not have been able to work and get back on my feet. It was a must. But I'm also glad to be off of it. My gut is much quieter without it, I'm more regular (Norman even visits) and I am gaining confidence about what foods I can tolerate. Now if I eat something I react to it's obvious, but fairly short-lived (2-4 hours of nausea, gurgling, etc). I only try one new thing at a time, for a couple of days and if I have no reactions then I figure it's safe. And in small amounts- because if it is something I'm going to react to, then a small amount will give a smaller reaction.
So that's my strategy, based mainly on the wisdom others share on this website.
Good luck.
Carol
I just stopped taking Entocort 2 weeks ago and it's been easier to see which foods I can't tolerate. The Entocort seemed to mask reactions. Without Entocort, I would not have been able to work and get back on my feet. It was a must. But I'm also glad to be off of it. My gut is much quieter without it, I'm more regular (Norman even visits) and I am gaining confidence about what foods I can tolerate. Now if I eat something I react to it's obvious, but fairly short-lived (2-4 hours of nausea, gurgling, etc). I only try one new thing at a time, for a couple of days and if I have no reactions then I figure it's safe. And in small amounts- because if it is something I'm going to react to, then a small amount will give a smaller reaction.
So that's my strategy, based mainly on the wisdom others share on this website.
Good luck.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou