Hi Sunshine,
Really good question! It seems we're all the same, but this shows we're not. Nobody mentioned transit time, so I thought I'd throw my story out . . transit time 30 hours. If I eat a trigger food, I feel sickish (bloated, moody, worse-than-usual blue circles under eyes) for 30 hours, then start having BM's. At first they will be formed, but very "urgent"; then looser, more frequent and more urgent. Maybe 8-10 trips to the throne, over 2-3 hours, but some of those trips I just lock myself in for 20-30 minutes. That's when my husband asks "are you OKAY?" and I go back in my mind 30 hours previous, to remember what I ate. The transit time is always the same, but the degree of drama & discomfort depends on the trigger. Dairy is the worst reaction, then soy or corn, then eggs, then wheat. *TEX, why is that? I would think wheat to be the worst trigger, wouldn't you?
Oh, I'm forgetting the version that happens when we're driving. Imagine the husband driving like a maniac, looking for public bathrooms, saying "Can you make it?" Oh man . . so "not fun".
artteacher
What's your typical MC day?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow! Great observation. You deserve at least 3 gold stars for that one.Marsha wrote:Dairy is the worst reaction, then soy or corn, then eggs, then wheat. *TEX, why is that? I would think wheat to be the worst trigger, wouldn't you?
That's a super question. I wish I knew the answer.
Of course, not everyone reacts that way, because some of us react within a matter of minutes after eating certain foods, especially gluten, and for those individuals, the reaction time for dairy, (and presumably the other intolerances), usually comes later. Your transit time is apparently very stable, and mine usually is, but not always. My usual transit time is 30+ hours, but I react to oats within a few hours. Like you, I typically show various symptoms, (bloating, headache, body aches and pains, etc.), within a couple of hours or so, after eating a trigger food, but the D usually comes at least 30 hours later. Dairy is probably a special case, because we not only react to casein, but also to the lactose that it contains. The lactose reaction is due to it's fermentation in the colon, after the small intestine fails to digest it, due to a deficiency of lactase enzyme.
I honestly don't know how long it takes me to react to gluten, because I never could see a connection. For me, all the other intolerances seemed to make me sick, but I never could pin down a gluten reaction, even though I started a food diary over a month before I dropped gluten, and continued it for a year and a half, (of course, I was eating gluten every day, before I eliminated it from my diet, and I never experimented with gluten after that - I just cut it out, cold turkey). After doing that, I found that my condition began to improve somewhat, so I finally achieved remission, after I also cut out all the other intolerances, (and irritants, such as fiber, fruits, most veggies, sugar, etc.).
Based on my understanding of many of the personal experiences posted here on this board, I get the impression that a typical reaction time for gluten, is approximately 6 hours, and many of the original founding members have mentioned that time frame. My hunch is that they, and those of us with delayed D, (normal transit time), are having normal T-cell type reactions, and those who have D within a matter of minutes, are having mast cell reactions, (histamine-based reactions), and presumably, they almost surely have the typical T-cell reactions later, just like the rest of us. IOW, those who react quickly, probably have more than one mode of sensitivity, which, IMO, obviously qualifies them to be considered as more sensitive than those who don't have this characteristic in their reactions, just as those who react six hours after ingesting gluten, are more sensitive than those of us who react after a normal transit time, (30 hours).
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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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Sunshine,
Been at this game for years now and at the height of MC I might have been in the bathroom upwards of 30 times per day but it is now at a point - through diet and definitely not meds cause they never worked for me - to have 4-5 times in the a.m. and sometimes around 2 PM in the afternoon a bout or 2. Rarely up at night any more but sometimes it hits. Entocort did work for me but was not able to handle the side effects - dizziness, imbalance and blurred vision.
By the way, WELCOME and a really great question.
Maggie
Been at this game for years now and at the height of MC I might have been in the bathroom upwards of 30 times per day but it is now at a point - through diet and definitely not meds cause they never worked for me - to have 4-5 times in the a.m. and sometimes around 2 PM in the afternoon a bout or 2. Rarely up at night any more but sometimes it hits. Entocort did work for me but was not able to handle the side effects - dizziness, imbalance and blurred vision.
By the way, WELCOME and a really great question.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
This is a good question. I'm visiting my DD right now and haven't have a lot of time to post. I've been reading, but not posting - I can't seem to stay away even when I'm on vacation!
Before I was Dx'd, I would have about 6-9 trips to the "room" a day, throughout the day. I would rarely have to go once I was in bed and I don't recall ever having an accident in bed, though I did occasionally during the day.
You'd think that with a less severe case of MC that I would have a quicker time achieving remission, but the two don't necessarily correlate. Remission probably is more closely related to our genetic makeup and the number of intolerances that we must eliminate.
I'm very close to remission and am taking 3 mg of Entocort every three days. My typical day now is to have one normal or solid BM in the morning. Most of the time, I have another in the evening. I get concerned when my BM is not as normal and the water is cloudy when I flush. A perfect Norman to me is no cloudiness in the bowl. If there is cloudiness, I assume that I've eaten something I shouldn't.
I did have one incident of explosive D during this trip, due to trying a new food, a reminder that I'll never be completely "out of the woods." I have to constantly be vigilant about what I eat. Vacations are very tricky and I do the best I can.
Gloria
Before I was Dx'd, I would have about 6-9 trips to the "room" a day, throughout the day. I would rarely have to go once I was in bed and I don't recall ever having an accident in bed, though I did occasionally during the day.
You'd think that with a less severe case of MC that I would have a quicker time achieving remission, but the two don't necessarily correlate. Remission probably is more closely related to our genetic makeup and the number of intolerances that we must eliminate.
I'm very close to remission and am taking 3 mg of Entocort every three days. My typical day now is to have one normal or solid BM in the morning. Most of the time, I have another in the evening. I get concerned when my BM is not as normal and the water is cloudy when I flush. A perfect Norman to me is no cloudiness in the bowl. If there is cloudiness, I assume that I've eaten something I shouldn't.
I did have one incident of explosive D during this trip, due to trying a new food, a reminder that I'll never be completely "out of the woods." I have to constantly be vigilant about what I eat. Vacations are very tricky and I do the best I can.
Gloria
You never know what you can do until you have to do it.
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Carol Arnett
- Gentoo Penguin
- Posts: 423
- Joined: Fri Mar 17, 2006 12:07 pm
What`s your typical mc day
Hi Sunshine, (I love your name!)
A typical mc day for me has been an average of 20 watery bouts of D with nighttime accidents....without knowing until it was over. I have had as many as 50+ bouts in one day. I didn`t keep a tally sheet but did use Charmin wipes and I have used a whole pack plus several from a second one. Each time I thought I was keeping myself very well hydrated with a full 8oz. glass of Gatorade after each time plus water but twice I have ended up in the hospital for 2 weeks with a PIC line plus IVs because of severe dehydration and major weight loss.
I tried not eating but I would go anyway so it is very, very important to eat and drink even if you feel it is going straight through.
I hope this finds you doing well. Hugs, Carol
A typical mc day for me has been an average of 20 watery bouts of D with nighttime accidents....without knowing until it was over. I have had as many as 50+ bouts in one day. I didn`t keep a tally sheet but did use Charmin wipes and I have used a whole pack plus several from a second one. Each time I thought I was keeping myself very well hydrated with a full 8oz. glass of Gatorade after each time plus water but twice I have ended up in the hospital for 2 weeks with a PIC line plus IVs because of severe dehydration and major weight loss.
I tried not eating but I would go anyway so it is very, very important to eat and drink even if you feel it is going straight through.
I hope this finds you doing well. Hugs, Carol
Carol Arnett
Hi all,
My remission of about three years ended almost a year ago. I have had almost no days without watery D, etc, since. I have tried gluten free and lactose free but it didn't help much but maybe I wasn't strict enough with it. I have been down to about two or three bouts a day until this past week and once again it is worse and I really don't know why. This is a really depressing condition as you all know, I just needed to write as friends and family are not so patient with me anymore. It is difficult for people to understand why you might need to stay home and that it never seems to end! Best wishes and better health to all. Maddie
My remission of about three years ended almost a year ago. I have had almost no days without watery D, etc, since. I have tried gluten free and lactose free but it didn't help much but maybe I wasn't strict enough with it. I have been down to about two or three bouts a day until this past week and once again it is worse and I really don't know why. This is a really depressing condition as you all know, I just needed to write as friends and family are not so patient with me anymore. It is difficult for people to understand why you might need to stay home and that it never seems to end! Best wishes and better health to all. Maddie
Hi Maddie,
Welcome to the board. Yes, for the diet to control the symptoms of MC, it has to be very strictly followed. Even tiny amounts of gluten, can cause reactions. Also, it can take a long time for the gut to heal, before the diet will completely control the symptoms - anywhere from a couple of months to as long as a year, for some of us. While we are usually lactose intolerant while we are reacting, due to a deficiency in the production of lactase enzyme, it is actually the casein in milk and all dairy products, that causes us the most problems, (if we are intolerant of it, and most of us are). Also, about half of us are sensitive to soy.
How did you achieve remission the first time? Have you tried any meds, this time? Many of us have good success with Entocort EC.
Tex
Welcome to the board. Yes, for the diet to control the symptoms of MC, it has to be very strictly followed. Even tiny amounts of gluten, can cause reactions. Also, it can take a long time for the gut to heal, before the diet will completely control the symptoms - anywhere from a couple of months to as long as a year, for some of us. While we are usually lactose intolerant while we are reacting, due to a deficiency in the production of lactase enzyme, it is actually the casein in milk and all dairy products, that causes us the most problems, (if we are intolerant of it, and most of us are). Also, about half of us are sensitive to soy.
How did you achieve remission the first time? Have you tried any meds, this time? Many of us have good success with Entocort EC.
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.
Maddie Sure sounds like you might need some med to help you get control of this thing again. What has your doctor offered/suggested? Maybe you could ask him about Entocort if he hasn't already brought it up.
I know it's very hard for friends and family to understand how difficult it is for people who are dealing with active MC. It is so life altering and they just don't understand how things can be so "out of control" or something. It certainly does make a person want to stay within a small radius of their own bathroom.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi and thanks for your responses. My first remission came about after about 3 months on Asacol. My dr. who is not very helpful, insists that diet has nothing to do with this. Why are so many of them like this!? Anyway, this go round the Asacol did nothing so he put me on pepto for about two months, still no help. I hate to call him because I know he will have me try prednisone and I have read some reallly horrible things about it. If anyone has any good web sites on gluten-free and dairy-free diets I would appreciate hearing from them.i I had such a hard time trying to follow the restrictions and I am sure I became impatient much to soon as I did't see any results for about three months. Once again, thanks for your response and I can't tell you how reassuring it is to have this kind of support! Bless you and have a good day. Maddie
Maddie,
Most websites seem to address either a gluten-free diet, or a dairy free diet, but not both together, and almost none of them include soy, also, to which about half of us are sensitive. You can find a lot of that information right here on this site. For example, one of our members is a professional chef, and she has posted hundreds of safe recipes here at this link, that are free of gluten, dairy, and soy:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
If you are interested in slide show type presentations, this post contains a link that you can click on to see a slide show about the GF diet, but be aware that the presentation repeatedly advises the viewer to check with their health care provider, or dietitian, before making any dietary changes, and most doctors and dietitians are not up to date on this, and will insist that MC is not affected by diet, so there's not much point in asking them about it:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8976
Also, there is a lot of information on the diet here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Here are some meal suggestions from members:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
And there are many, many discussions here about various related topics. If you will do a search of the database here, by entering the key words that you are interested in, in the search feature, (which is one of the links at the top of the page), you will come up with many leads. I'm not talking about the Google search option, but the local "Search" link, several lines above the Google search window.
Prednisone has a lot of very unpleasant side effects. Entocort EC works just as well, with far fewer side effects, because it is encapsulated, so that it does not become activated until it reaches the lower third of the small intestine and the colon. Because of that, only about 10 to 15 % of it is absorbed into the bloodstream, which greatly reduces the risk of side effects. If you have a diagnosis of MC, your GP should be able to prescribe Entocort for you, so that you wouldn't have to deal with your GI doc. Many of us have to do that, because our GI docs are generally not very helpful.
Entocort usually works faster than Asacol, (typically in 2 to 6 weeks), and it will allow you to eliminate the D, while you are waiting for your gut to heal, and the diet to take over.
I hope that you can fine-tune your diet, so that you'll able to achieve remission, and stay that way, without the need for meds, once your intestines heal. Please feel free to ask any questions that come to mind, because we have all been through what you're dealing with, and we will help in any way we can.
Tex
Most websites seem to address either a gluten-free diet, or a dairy free diet, but not both together, and almost none of them include soy, also, to which about half of us are sensitive. You can find a lot of that information right here on this site. For example, one of our members is a professional chef, and she has posted hundreds of safe recipes here at this link, that are free of gluten, dairy, and soy:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
If you are interested in slide show type presentations, this post contains a link that you can click on to see a slide show about the GF diet, but be aware that the presentation repeatedly advises the viewer to check with their health care provider, or dietitian, before making any dietary changes, and most doctors and dietitians are not up to date on this, and will insist that MC is not affected by diet, so there's not much point in asking them about it:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8976
Also, there is a lot of information on the diet here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Here are some meal suggestions from members:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
And there are many, many discussions here about various related topics. If you will do a search of the database here, by entering the key words that you are interested in, in the search feature, (which is one of the links at the top of the page), you will come up with many leads. I'm not talking about the Google search option, but the local "Search" link, several lines above the Google search window.
Prednisone has a lot of very unpleasant side effects. Entocort EC works just as well, with far fewer side effects, because it is encapsulated, so that it does not become activated until it reaches the lower third of the small intestine and the colon. Because of that, only about 10 to 15 % of it is absorbed into the bloodstream, which greatly reduces the risk of side effects. If you have a diagnosis of MC, your GP should be able to prescribe Entocort for you, so that you wouldn't have to deal with your GI doc. Many of us have to do that, because our GI docs are generally not very helpful.
Entocort usually works faster than Asacol, (typically in 2 to 6 weeks), and it will allow you to eliminate the D, while you are waiting for your gut to heal, and the diet to take over.
I hope that you can fine-tune your diet, so that you'll able to achieve remission, and stay that way, without the need for meds, once your intestines heal. Please feel free to ask any questions that come to mind, because we have all been through what you're dealing with, and we will help in any way we can.
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 Maddie,
Welcome!!
Gluten and casein free diets are now being used to treat autism, and you can find web sites for this by searching for GFCF. A lot of them also recognise soy intolerance but don't necessarily have resources for to help.
An example with links to similar sites is:
http://gfcf-diet.talkaboutcuringautism.org/index.htm
No surprises that since they are aiming at kids they tend to have more ideas for snacks than gourmet meals!! Hey, we all need some snacks at times.
Lyn
Welcome!!
Gluten and casein free diets are now being used to treat autism, and you can find web sites for this by searching for GFCF. A lot of them also recognise soy intolerance but don't necessarily have resources for to help.
An example with links to similar sites is:
http://gfcf-diet.talkaboutcuringautism.org/index.htm
No surprises that since they are aiming at kids they tend to have more ideas for snacks than gourmet meals!! Hey, we all need some snacks at times.
Lyn
Hi, and welcome to our support group. Here is a link to some meal ideas that are usually safe, but remember that we can't handle much fiber until our gut has a chance to heal, so minimize the vegetables, and especially fruit, and never eat it raw - only well cooked, and no lettuce at all, until your gut has healed.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
Tex
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
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.