My symptoms have been up and down since my last posting. I decided to create a spreadsheet (math people love spreadsheets!) with columns listing the type of BM I had the day after I ate something. In the rows, I'm entering the food (by category) and the date I've eaten it. Then I put an "X" in the column which describes my BM(s) the next day. I've been keeping a food diary faithfully since August, but it's still been difficult to see any patterns.
With the spreadsheet, I'm able to hide the bad reaction columns and focus only on the columns that I've had solid or normal BMs. That way I can feel reasonably sure that I don't react to that particular food. I think a spreadsheet would only be useful for someone who sometimes gets visited by Norman, however.
The spreadsheet shows that most vegetables (I'm no longer eating corn) agree with me. But it appears that I react most of the days that I've eaten rice cake with peanut butter and jelly. I'm thinking that I'm intolerant to legumes, which include peanut butter. It's confusing because I ate peanut butter cookies with mixed reactions.
It will be easy to substitute peanut butter with almond butter on the rice cake and see if it makes a difference.
I'm beginning to think that I can tolerate small amounts of gluten, at least while I'm on Entocort. I ate french fries from restaurants three times without any reaction while travelling last week. Of course it's possible that the french fries didn't have any gluten on them, but I ordered them from three different restaurants. I'm not going to deliberately eat gluten, but I think it's interesting that I didn't react.
I also think that I feel better drinking the Rice Dream milk rather than the homemade rice milk. I attribute that to the calcium and vitamin D in Rice Dream, however. I just purchased some calcium/vitamin D tablets and probiotics from The Vitamin Shoppe that claim to be free of my numerous intolerances. I'll try them tomorrow with the homemade rice milk and see what happens.
Not Maintaining on Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Gloria,
I kept a food diary on a spread sheet for a couple of years, and it took me a long time to realize that while a few of my reactions were occurring within a matter of hours after eating, some of them were taking two, three, and even four days. IOW, the normal turnaround time of around 30 hours doesn't necessarily correlate with what happens with MC reactions. Also, I recorded how I felt, in general, since D is not the only symptom I was having.
In my case, at least, my reaction times were consistent for each trigger food, but the times varied greatly between the types of trigger foods. IOW, I could feel a reaction to beef after just a few hours, (headache, stiff neck, pain between my shoulders, and slight to moderate bloating), but it never caused D. All the symptoms would be gone within less than 24 hours. Milk usually caused bloating within about half a day, and D after about 24 hours. Cheese took three or four days, and I had to eat it every day, or it would take longer. These days, milk usually causes C. Popcorn took over three days, usually, but I suspect that it was probably fermenting in my gut, rather than moving on through. Also, be aware that I am one who had/has alternating D and C. People who have only D, probably never have very long times to the start of a reaction.
Peanut butter still gives me a tummy ache, just as it did while I was still reacting, but now it doesn't cause D, as it did then. Almonds or almond butter caused a reaction similar to peanuts. Though I haven't tried almonds or almond butter lately, I tried them after I had been in remission for about three years, and their effect was very similar to peanuts. I haven't eaten any jelly since I've been in remission, but it caused reactions, before my gut healed.
When you eat small amounts of gluten, from various sources, it's difficult to say how much it adds up to, as a daily dose. Some restaurants use dedicated fryers, while some fry their French fries and onion rings, (and various other things), in the same oil. Yes, the Entocort should allow you to "tolerate" some gluten, but your gut would probably heal a lot faster, without the frequent gluten challenges. LOL.
Unnecessary challenges are the reason why it took me a year and a half to achieve remission. After I stopped doing dairy and/or corn challenges every few weeks, (to see if I was "healed", and able to tolerate them), I was able to finally achieve remission. At that point, I decided to wait at least a couple of years before I tried any more challenges, and after that time passed, I found that I could indeed tolerate them, (dairy and corn, that is - I'll never do a gluten challenge).
Tex
I kept a food diary on a spread sheet for a couple of years, and it took me a long time to realize that while a few of my reactions were occurring within a matter of hours after eating, some of them were taking two, three, and even four days. IOW, the normal turnaround time of around 30 hours doesn't necessarily correlate with what happens with MC reactions. Also, I recorded how I felt, in general, since D is not the only symptom I was having.
In my case, at least, my reaction times were consistent for each trigger food, but the times varied greatly between the types of trigger foods. IOW, I could feel a reaction to beef after just a few hours, (headache, stiff neck, pain between my shoulders, and slight to moderate bloating), but it never caused D. All the symptoms would be gone within less than 24 hours. Milk usually caused bloating within about half a day, and D after about 24 hours. Cheese took three or four days, and I had to eat it every day, or it would take longer. These days, milk usually causes C. Popcorn took over three days, usually, but I suspect that it was probably fermenting in my gut, rather than moving on through. Also, be aware that I am one who had/has alternating D and C. People who have only D, probably never have very long times to the start of a reaction.
Peanut butter still gives me a tummy ache, just as it did while I was still reacting, but now it doesn't cause D, as it did then. Almonds or almond butter caused a reaction similar to peanuts. Though I haven't tried almonds or almond butter lately, I tried them after I had been in remission for about three years, and their effect was very similar to peanuts. I haven't eaten any jelly since I've been in remission, but it caused reactions, before my gut healed.
When you eat small amounts of gluten, from various sources, it's difficult to say how much it adds up to, as a daily dose. Some restaurants use dedicated fryers, while some fry their French fries and onion rings, (and various other things), in the same oil. Yes, the Entocort should allow you to "tolerate" some gluten, but your gut would probably heal a lot faster, without the frequent gluten challenges. LOL.
Unnecessary challenges are the reason why it took me a year and a half to achieve remission. After I stopped doing dairy and/or corn challenges every few weeks, (to see if I was "healed", and able to tolerate them), I was able to finally achieve remission. At that point, I decided to wait at least a couple of years before I tried any more challenges, and after that time passed, I found that I could indeed tolerate them, (dairy and corn, that is - I'll never do a gluten challenge).
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 Gloria, fellow DQ1,
I second what Tex has said. It is very diffcult to sort everything out in the beginning. I now know that I react to gluten within 16-18 hours with a softer stool. With dairy I have battery acid diarrhea within 2 hours. Some foods give me increased muscle aches and pains, which can occur days later. One day after eating beef I feel somewhat stiff all over. And on and on...........
Legumes do indeed open those "gates" in the intestine that lead to leaky gut. However, I hate to mention this, because I know how frustrating all of this is, but perhaps you should do a trial with NO grains (not even rice - yikes). I can occasionally now eat rice - perhaps once a week - but it still gives me softer stools.
Hang in there - you will eventually figure it all out.
Love,
Polly
I second what Tex has said. It is very diffcult to sort everything out in the beginning. I now know that I react to gluten within 16-18 hours with a softer stool. With dairy I have battery acid diarrhea within 2 hours. Some foods give me increased muscle aches and pains, which can occur days later. One day after eating beef I feel somewhat stiff all over. And on and on...........
Legumes do indeed open those "gates" in the intestine that lead to leaky gut. However, I hate to mention this, because I know how frustrating all of this is, but perhaps you should do a trial with NO grains (not even rice - yikes). I can occasionally now eat rice - perhaps once a week - but it still gives me softer stools.
Hang in there - you will eventually figure it all out.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
I'm glad to see that you are able to put a time frame on a gluten reaction. I know that I have read in posts by other members that some of us react to gluten in as few as 10 to 20 minutes.
Despite keeping a food diary for so long, to this day, I still don't have the foggiest idea how long it takes for me to have a gluten reaction. That seems unbelievable, but it's true - I never could pinpoint a relationship before I adopted the GF diet, and I never ate any afterward, (not knowingly, anyway). Part of the problem, of course, is that I ate gluten every day, before starting the diet, and I didn't start keeping a diary until about a month before I started the diet.
That's one of the reasons why I suspect that I may be a celiac - IOW, I may not get sick until enough damage accrues to my small intestine. You probably can recall that at one time, a few years ago, I considered a gluten challenge, and you talked me out of it. Thanks again. I agree with you, a gluten challenge is a pointless way to punish yourself. LOL.
Love,
Tex
I'm glad to see that you are able to put a time frame on a gluten reaction. I know that I have read in posts by other members that some of us react to gluten in as few as 10 to 20 minutes.
Despite keeping a food diary for so long, to this day, I still don't have the foggiest idea how long it takes for me to have a gluten reaction. That seems unbelievable, but it's true - I never could pinpoint a relationship before I adopted the GF diet, and I never ate any afterward, (not knowingly, anyway). Part of the problem, of course, is that I ate gluten every day, before starting the diet, and I didn't start keeping a diary until about a month before I started the diet.
That's one of the reasons why I suspect that I may be a celiac - IOW, I may not get sick until enough damage accrues to my small intestine. You probably can recall that at one time, a few years ago, I considered a gluten challenge, and you talked me out of it. Thanks again. I agree with you, a gluten challenge is a pointless way to punish yourself. LOL.
Love,
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.
So far, the only immediate reaction I've had is with eggs. I've eaten scrambled eggs twice and both times I reacted within a couple of hours with explosive D. I've never deliberately tested gluten.
Part of the problem I'm having is that my DH does most of the grocery shopping and cooking. I know that most women wouldn't consider that a problem and I certainly appreciate him doing it. But as much as he tries to follow my dietary restrictions, there are all those landmines. Today for example, he made potato pancakes and sausage. I have a feeling he used a mix for the pancakes. I got home from work late and he's gone for the evening, so I can't ask him. When I checked the sausage ingredients, they had nitrates, citric acid, etc. His original plan was to make meatloaf for tonight, but I'm avoiding tomatoes. He made tuna noodle casserole a while back using rice noodles and rice milk, but then he added cheese. I wouldn't eat it and he didn't want to either because it didn't taste very good. We ended up throwing it out and I felt badly for him. He tries very hard to make good meals for me. I could really relate to Sunny feeling badly that her husband has to deal with this problem. I think all of us can identify with her feelings.
I've pretty much decided that I should stop trying to figure out my additional intolerances until July when I'm retired and will be able to take over all the grocery shopping and cooking again. My DH really enjoys doing both and has already mumbled a bit about my resuming the role, but if I'm ever going to figure this out, I'll have to be in charge of what I eat. In spite of all the foods I've removed from my diet, I don't feel like I've made any significant progress since the first month after I began Entocort.
I just received a letter from my insurance company telling me that my GI is no longer accepting United Health Care, our provider. So I have to look for another GI. Mine wasn't that great, but at least he prescribed the Entocort. Life isn't so bad on the Entocort. I only am in the ROOM two, rarely three, times a day. Some days I see Georgie Porgie, some days I see Norman. That's not a big deal compared to others. My main interest in determining all my intolerances is to reduce or get off the Entocort. I'm beginning to think that I never will. Now I have to find another GI who'll prescribe it.
Part of the problem I'm having is that my DH does most of the grocery shopping and cooking. I know that most women wouldn't consider that a problem and I certainly appreciate him doing it. But as much as he tries to follow my dietary restrictions, there are all those landmines. Today for example, he made potato pancakes and sausage. I have a feeling he used a mix for the pancakes. I got home from work late and he's gone for the evening, so I can't ask him. When I checked the sausage ingredients, they had nitrates, citric acid, etc. His original plan was to make meatloaf for tonight, but I'm avoiding tomatoes. He made tuna noodle casserole a while back using rice noodles and rice milk, but then he added cheese. I wouldn't eat it and he didn't want to either because it didn't taste very good. We ended up throwing it out and I felt badly for him. He tries very hard to make good meals for me. I could really relate to Sunny feeling badly that her husband has to deal with this problem. I think all of us can identify with her feelings.
I've pretty much decided that I should stop trying to figure out my additional intolerances until July when I'm retired and will be able to take over all the grocery shopping and cooking again. My DH really enjoys doing both and has already mumbled a bit about my resuming the role, but if I'm ever going to figure this out, I'll have to be in charge of what I eat. In spite of all the foods I've removed from my diet, I don't feel like I've made any significant progress since the first month after I began Entocort.
I just received a letter from my insurance company telling me that my GI is no longer accepting United Health Care, our provider. So I have to look for another GI. Mine wasn't that great, but at least he prescribed the Entocort. Life isn't so bad on the Entocort. I only am in the ROOM two, rarely three, times a day. Some days I see Georgie Porgie, some days I see Norman. That's not a big deal compared to others. My main interest in determining all my intolerances is to reduce or get off the Entocort. I'm beginning to think that I never will. Now I have to find another GI who'll prescribe it.
You never know what you can do until you have to do it.
Gloria,
The last 2 times I tried eggs I had exactly the same results. 2 or so hours later I had terrible cramping and D, so the eggs along with everything else I ate before went through. I have yet to figure out why, as I don't seem to have problems with foods that have eggs in them. At least as far as I can tell.
I've been thinking of trying some organic or pasture raised eggs as perhaps I'm reacting to a pesticide or perhaps it was the luck of the draw and I got some bad eggs.
Thanks,
Mike
The last 2 times I tried eggs I had exactly the same results. 2 or so hours later I had terrible cramping and D, so the eggs along with everything else I ate before went through. I have yet to figure out why, as I don't seem to have problems with foods that have eggs in them. At least as far as I can tell.
I've been thinking of trying some organic or pasture raised eggs as perhaps I'm reacting to a pesticide or perhaps it was the luck of the draw and I got some bad eggs.
Thanks,
Mike
Mike - I've occasionally had foods with eggs as an ingredient, too, and haven't noticed a reaction. At least as far as I can tell. I really don't know what I'm reacting to. I'm starting to wonder if it's my water...we get it from Lake Michigan.
You never know what you can do until you have to do it.
Maybe one of these days you'll be able to eat eggs again, if this project makes it to the production stage.
http://www.sciencedaily.com/releases/20 ... 163445.htm
Gloria,
I have to agree with you - you're probably going to have a tough time achieving remission, unless you hold the keys to the kitchen. Most people can easily learn how to keep gluten out of food, but as the list of intolerances gets longer, the difficulty seems to increase exponentially.
Tex
http://www.sciencedaily.com/releases/20 ... 163445.htm
Gloria,
I have to agree with you - you're probably going to have a tough time achieving remission, unless you hold the keys to the kitchen. Most people can easily learn how to keep gluten out of food, but as the list of intolerances gets longer, the difficulty seems to increase exponentially.
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.
Wow! No wonder you're having problems. You're being wounded by friendly fire. LOL.
I wonder if he would be willing to post an "ingredient list" for each meal, or better yet, each item, so that you wouldn't have to play "food roulette" at mealtime.
Tex
I wonder if he would be willing to post an "ingredient list" for each meal, or better yet, each item, so that you wouldn't have to play "food roulette" at mealtime.
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.
-
MaggieRedwings
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Just a quick note but I have had the same reaction to eggs alone - almost immediate and bad cramping. If the eggs are part of a baked dish or added ingredient in something I do not have the same reaction. My DH Frank is also reacting the same to eggs and especially if we get them outside of the house.
Also, I am at the end of my rope trying to figure out what I can and cannot eat and I have been at this for almost 8 ?? years now and sometimes I feel I am still at ground zero. Entocort is a blessing but the doc wants me and only with my prodding on 3 mg every "few" days. This is not working and it is an up and down world. I must admit without the Entocort every day I have less imbalance issues. Someday this will all work itself out.
Love, Maggie
Also, I am at the end of my rope trying to figure out what I can and cannot eat and I have been at this for almost 8 ?? years now and sometimes I feel I am still at ground zero. Entocort is a blessing but the doc wants me and only with my prodding on 3 mg every "few" days. This is not working and it is an up and down world. I must admit without the Entocort every day I have less imbalance issues. Someday this will all work itself out.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Maggie - I've read you list of intolerances (shown below, written in June 2005).
I think you need to find another doctor who will prescribe the amount of Entocort that keeps your symptoms at bay. Since I need to find another GI, I'm going to keep searching until I find one who realizes that Entocort is what is sustaining me. I may never figure this out, but in the meantime, I think I'm entitled to have the medicine that allows me to live a normal life.
I don't know what you can eat.Veggies - tomatoes, eggplant, peppers (nightshade family) any raw veggies. I can tolerate potatoes though.
Fruit - any raw and orange juice or canned juices which have sulfites
Meat - I am a vegan so no meat, fowl or fish
Dairy - Vegan so the same applies but do eat some cheese for protein
Eggs - becoming quite intolerant
I am GF
I think you need to find another doctor who will prescribe the amount of Entocort that keeps your symptoms at bay. Since I need to find another GI, I'm going to keep searching until I find one who realizes that Entocort is what is sustaining me. I may never figure this out, but in the meantime, I think I'm entitled to have the medicine that allows me to live a normal life.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Gloria,
It is very tough at times but I am glad you listed my profile. Need to take the meat away since I was kind of protein-less and had to add a bit of meat and fish.
Will just keep working at it. He is really a great GI but as soon as I mentioned the balance problems he wanted me off it completely. I think Barbara was one who had very bad balance problems on Entocort. Without it every day the balance has corrected itself. You just never know.
Love, Maggie
It is very tough at times but I am glad you listed my profile. Need to take the meat away since I was kind of protein-less and had to add a bit of meat and fish.
Will just keep working at it. He is really a great GI but as soon as I mentioned the balance problems he wanted me off it completely. I think Barbara was one who had very bad balance problems on Entocort. Without it every day the balance has corrected itself. You just never know.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!