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New to group...question, how to escalate foods?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
New to group...question, how to escalate foods?
Hi! i've been reading your posts and i'm encouraged that you've all seemed to find ways to work with your problems. I've just received dx of MC. Had dia. since end of May. Pretty much everything except rice milk, rice protein, steamed rice, and bananas causes gas and more dia. Just started Entocort 3 days ago - so haven't noticed much yet. In the beginning i was feeling sick, had bad gas and bloating, and dia. from 8-12 times a day. For the past 3 weeks i've been able to get thru most of the day (as long as imodium is available if needed) until about 7pm when dia starts - on and off all night until everything i've eaten is gone. if i only eat as above, then i get off easy - if i try to add other foods (mostly just soluable fiber foods) then it's worse. Dr. says eat as normally as possible - well that's not much help. Everytime i try something, i get the gas cramps within a couple of hours and then the dia starts again. feels like i'll be eating bananas and rice the rest of my life! How do you start reintroducing foods and how do you know when and what to start with? I've seen so many IBS/IBD diets on the internet that my head is spinning - some say avoid starch (which seems to be the only thing I CAN eat), others say BRAT (everytime i try applesauce things get worse!)...Help! Oh, BTW, i got so sick and tired of feeling this way no matter what i eat that a few days ago i ate a steak - no seasoning except salt and cut off all obvious fat - and i didn't suffer at all - not at all! go figure!
The Lord never said it would be easy - He only said it would be worth it!
WELCOME CLA!!! 
It would be great if we could follow our doctor's advice and eat anything we wanted. Unfortunately, most of us here have had to ignore that advice and follow our own diet based upon our reactions to foods. We've found, as you have, that certain foods cause immediate reactions, even though we've previously been able to eat them without any problems. MC changes how your intestines respond to foods and you need to pay careful attention to those responses.
Some of us manage our MC strictly by diet, some use only medication, and some use both. I am managing by a combination of diet and medication. I'm presently taking a minimal 3 mg./day dosage of Entocort and have eliminated the foods listed in my Avatar, plus a few more. If you choose to make dietary changes, most of us find that we have to eliminate gluten and dairy. About half of us also have to eliminate soy.
There is a great deal of information on this board...I'm sure you will find a lot of familiar-sounding stories. Please feel free to ask any questions - we are here to help you along the way to remission. You will get better!
Gloria
It would be great if we could follow our doctor's advice and eat anything we wanted. Unfortunately, most of us here have had to ignore that advice and follow our own diet based upon our reactions to foods. We've found, as you have, that certain foods cause immediate reactions, even though we've previously been able to eat them without any problems. MC changes how your intestines respond to foods and you need to pay careful attention to those responses.
Some of us manage our MC strictly by diet, some use only medication, and some use both. I am managing by a combination of diet and medication. I'm presently taking a minimal 3 mg./day dosage of Entocort and have eliminated the foods listed in my Avatar, plus a few more. If you choose to make dietary changes, most of us find that we have to eliminate gluten and dairy. About half of us also have to eliminate soy.
There is a great deal of information on this board...I'm sure you will find a lot of familiar-sounding stories. Please feel free to ask any questions - we are here to help you along the way to remission. You will get better!
Gloria
You never know what you can do until you have to do it.
Hi,
Welcome to our internet family. In the beginning, it sometimes seems as though anything and everything makes us sick. Eventually, we come to realize that certain foods are more of a problem than others.
The Entocort will probably start helping in a week or so, especially if you continue to eat a very bland diet. IBS diets will not work for MC, because fiber is a problem with MC. Typically, while we are recovering, the less fiber we eat, the better off we are. That's why the applesauce causes problems for you. Most fruits have a significant amount of fiber, and so do many vegetables. For a while, it's best to avoid all fruits, (except bananas - many of us can eat bananas without any problems, and they're a very good source of potassium), and some vegetables, and any vegetables that you eat, should be overcooked. Most of us can tolerate meat, including poultry, pork, lamb, and fish. Some of us have problems with beef, but that doesn't apply to everyone. Just check the label to make sure that the meat is not "injected" with some sort of tenderizing or moisturizing solution. Most of us can also tolerate potatoes, rice, and a few simple vegetables, such as squash, green beans, and broccoli, (well cooked, of course). In addition to gluten and dairy, about half of us are intolerant of soy. It's best to avoid all artificial sweeteners, especially aspertame, and the sugar alcohols, (sorbitol, manitol, etc.).
If any wheat is a problem, then all wheat is very likely a problem, even the tiniest amount. That also applies to rye, barley, and probably oats. It will take a while to heal all of the damage caused by the wheat gluten, and you will continue to react, until your gut heals sufficiently, or the Entocort takes over, or a combination of the two gets the job done. Most of us have found that our intestines have to heal for roughly a year or more, before we can add back the foods that bother us while we are reacting. Everyone is different, but healing takes much longer than most people expect. Most GI doctors don't have the foggiest idea how long it takes for the gut to heal the inflammation caused by MC, and by gluten.
If you choose to continue to use Entocort, then you will not have to be as strict with your diet as you would otherwise have to be, as the Entocort will mask the symptoms, and some people find that they can eat virtually anything, as long as they take Entocort, while others still have to be careful, and a few, have to be very careful of their diet, in order to maintain remission, even while taking Entocort.
If you are interested in trying to control your symptoms by diet alone, (after you achieve remission), there is a lab in Dallas, TX, known as Enterolab, where you can order test kits, for stool samples, and they can accurately and reliably test for certain food intolerances, in order to simplify the process of deciding which foods are major problems. In general, the skin allergy tests, and blood tests, are pretty much useless for determining the types of food sensitivity that are triggered when MC is initially triggered.
https://www.enterolab.com/Home.htm
Again, welcome to our group, and please feel free to ask any questions that come to mind. Trust me, we've all been there, done that, and most of us have had "accidents", in some unfortunate locations, so we know what you are dealing with, and how you feel. People who do not have this disease, really have no idea what it's like to have to live with these symptoms, and that especially applies to GI docs. The bottom line is, you can get your life back, but for some of us, it's not easy, and it can take a while. We're here to help you in any way we can.
Tex (Wayne)
Welcome to our internet family. In the beginning, it sometimes seems as though anything and everything makes us sick. Eventually, we come to realize that certain foods are more of a problem than others.
The Entocort will probably start helping in a week or so, especially if you continue to eat a very bland diet. IBS diets will not work for MC, because fiber is a problem with MC. Typically, while we are recovering, the less fiber we eat, the better off we are. That's why the applesauce causes problems for you. Most fruits have a significant amount of fiber, and so do many vegetables. For a while, it's best to avoid all fruits, (except bananas - many of us can eat bananas without any problems, and they're a very good source of potassium), and some vegetables, and any vegetables that you eat, should be overcooked. Most of us can tolerate meat, including poultry, pork, lamb, and fish. Some of us have problems with beef, but that doesn't apply to everyone. Just check the label to make sure that the meat is not "injected" with some sort of tenderizing or moisturizing solution. Most of us can also tolerate potatoes, rice, and a few simple vegetables, such as squash, green beans, and broccoli, (well cooked, of course). In addition to gluten and dairy, about half of us are intolerant of soy. It's best to avoid all artificial sweeteners, especially aspertame, and the sugar alcohols, (sorbitol, manitol, etc.).
If any wheat is a problem, then all wheat is very likely a problem, even the tiniest amount. That also applies to rye, barley, and probably oats. It will take a while to heal all of the damage caused by the wheat gluten, and you will continue to react, until your gut heals sufficiently, or the Entocort takes over, or a combination of the two gets the job done. Most of us have found that our intestines have to heal for roughly a year or more, before we can add back the foods that bother us while we are reacting. Everyone is different, but healing takes much longer than most people expect. Most GI doctors don't have the foggiest idea how long it takes for the gut to heal the inflammation caused by MC, and by gluten.
If you choose to continue to use Entocort, then you will not have to be as strict with your diet as you would otherwise have to be, as the Entocort will mask the symptoms, and some people find that they can eat virtually anything, as long as they take Entocort, while others still have to be careful, and a few, have to be very careful of their diet, in order to maintain remission, even while taking Entocort.
If you are interested in trying to control your symptoms by diet alone, (after you achieve remission), there is a lab in Dallas, TX, known as Enterolab, where you can order test kits, for stool samples, and they can accurately and reliably test for certain food intolerances, in order to simplify the process of deciding which foods are major problems. In general, the skin allergy tests, and blood tests, are pretty much useless for determining the types of food sensitivity that are triggered when MC is initially triggered.
https://www.enterolab.com/Home.htm
Again, welcome to our group, and please feel free to ask any questions that come to mind. Trust me, we've all been there, done that, and most of us have had "accidents", in some unfortunate locations, so we know what you are dealing with, and how you feel. People who do not have this disease, really have no idea what it's like to have to live with these symptoms, and that especially applies to GI docs. The bottom line is, you can get your life back, but for some of us, it's not easy, and it can take a while. We're here to help you in any way we can.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Ah you poor thing Cla. I about lost my mind in the beginning, it is very disheartening, we have all been there.
One thing that really helps me is Psyllium husk, I was skeptical when I first read about somebody with constant D using more fiber
to help with the problem, but no BS, it really really helps to add some bulk to your poo.
Start with a couple of tablespoons, I just mix it in water and then after a few days you can up the amount a tablespoon or so. If you are on any medications, don't take the Physillum within 2 hours of taking your meds.
Nothing on the market made to control D would work for me at all, this really helps get control of things. I am in the midst of a relaspe at the moment and am back watching my diet with a vengence and taking the Psyllium again, it is helping alot.
Hang in there Cla, try to think positive and you will heal in time.
And I so agree our docs for the most part really don't have a clue. Mine just told me what I had and sent me on my merry way. We have to figure this out ourselves.
Tex is so right, if wheat is a problem then you have to cut out all gluten and pronto.
One thing that really helps me is Psyllium husk, I was skeptical when I first read about somebody with constant D using more fiber
to help with the problem, but no BS, it really really helps to add some bulk to your poo.Start with a couple of tablespoons, I just mix it in water and then after a few days you can up the amount a tablespoon or so. If you are on any medications, don't take the Physillum within 2 hours of taking your meds.
Nothing on the market made to control D would work for me at all, this really helps get control of things. I am in the midst of a relaspe at the moment and am back watching my diet with a vengence and taking the Psyllium again, it is helping alot.
Hang in there Cla, try to think positive and you will heal in time.
And I so agree our docs for the most part really don't have a clue. Mine just told me what I had and sent me on my merry way. We have to figure this out ourselves.
Tex is so right, if wheat is a problem then you have to cut out all gluten and pronto.
Wow! You've just given me more information than i've been able to gleen from hours and hours of research and 3 drs and a PA in the past weeks. Thank you so much for your insight and personal experience - tho it's a little depressing to realize that this is not a quick fix problem.
I do have to tell you that my greatest help to date has been my homeopath. i've been seeing him for just about a year now. i was not sleeping and because of a rheumatoid arthritis problem (Ankylosing Spondylitis) i was on a lot of meds that caused me to be on a lot of other meds for a number of years. He was able to get me off of everything - including high blood pressure meds (i now have bp average of about 115/60). i still take an NSAID but i'm using a natural one instead of Celebrex. Anyway, he has done food testing for me and it is more accurate than anything else i've ever done. i had allergies to 132 out of 140 of the foods he tested. We resolved the allergies, but most of the same foods that tested really bad before are testing "of no value" right now, and many are reacting because of the inflammation but not the other way around. Dairy is one of them and since it tested bad to start with, i just don't eat it anymore. Gluten is not a problem, but i find some breads more tolerable than others. My body seems to really like Spelt bread as long as i only barely touch it with a little "i can't believe it's not butter". Funny you should mention soy - i don't do well with that either. Also the drs would have me eating lots of yogurt which turned out to be another bad idea. i've have had good luck with oatmeal and cornmeal. Also, according to his testing, this bout started from a nasty food bacteria.
You're right on about the fruits and vegetables. So many of the diets i saw said to eat soluable fiber fruits that i tried just two small pineapple bits last week - but really suffererd for it so i've stuck to bananas. Thanks for explaining about the applesauce. Drs said that should be a staple for me but i kept trying and it kept fighting back. My homeopath recommended the junior baby food carrots since they have something in them that helps inflammation. They do seem to help some. i've tried peeled zucchini and eggplant with varying success but only because all the drs have said i should be eating things. I feel best right now on just the rice protien, bananas, and spelt bread. My homeopath has me on Life Essential minerals and my blood tests surprised the drs that they came out so well so i'm doing okay with nutrition even tho i'm not eating the fruits and vegetables as they suggested - so it sounds like you all feel that it's okay to continue eating the way that makes me feel best until things settle down. That would be a great relief.
I have so many questions and i don't want to overwhelm you or wear out my welcome so i'll stop here for now. Thank you again so much for your help - it's just such a mental to relief to hear from those who've been there. Bless you for your kind responses and your willingness to help others this way.
I do have to tell you that my greatest help to date has been my homeopath. i've been seeing him for just about a year now. i was not sleeping and because of a rheumatoid arthritis problem (Ankylosing Spondylitis) i was on a lot of meds that caused me to be on a lot of other meds for a number of years. He was able to get me off of everything - including high blood pressure meds (i now have bp average of about 115/60). i still take an NSAID but i'm using a natural one instead of Celebrex. Anyway, he has done food testing for me and it is more accurate than anything else i've ever done. i had allergies to 132 out of 140 of the foods he tested. We resolved the allergies, but most of the same foods that tested really bad before are testing "of no value" right now, and many are reacting because of the inflammation but not the other way around. Dairy is one of them and since it tested bad to start with, i just don't eat it anymore. Gluten is not a problem, but i find some breads more tolerable than others. My body seems to really like Spelt bread as long as i only barely touch it with a little "i can't believe it's not butter". Funny you should mention soy - i don't do well with that either. Also the drs would have me eating lots of yogurt which turned out to be another bad idea. i've have had good luck with oatmeal and cornmeal. Also, according to his testing, this bout started from a nasty food bacteria.
You're right on about the fruits and vegetables. So many of the diets i saw said to eat soluable fiber fruits that i tried just two small pineapple bits last week - but really suffererd for it so i've stuck to bananas. Thanks for explaining about the applesauce. Drs said that should be a staple for me but i kept trying and it kept fighting back. My homeopath recommended the junior baby food carrots since they have something in them that helps inflammation. They do seem to help some. i've tried peeled zucchini and eggplant with varying success but only because all the drs have said i should be eating things. I feel best right now on just the rice protien, bananas, and spelt bread. My homeopath has me on Life Essential minerals and my blood tests surprised the drs that they came out so well so i'm doing okay with nutrition even tho i'm not eating the fruits and vegetables as they suggested - so it sounds like you all feel that it's okay to continue eating the way that makes me feel best until things settle down. That would be a great relief.
I have so many questions and i don't want to overwhelm you or wear out my welcome so i'll stop here for now. Thank you again so much for your help - it's just such a mental to relief to hear from those who've been there. Bless you for your kind responses and your willingness to help others this way.
CLA, we're glad you found us. This is the best place in the world to find information on MC and get support.
Dear CLA,
Don't worry about asking a lot of questions or wearing out your welcome. I think all of us got to this site with the same feeling of being overwhelmed and not knowing where to turn. So, all questions are welcomed. I know I usually learn something new when a question is asked.
Good luck,
Jan
Don't worry about asking a lot of questions or wearing out your welcome. I think all of us got to this site with the same feeling of being overwhelmed and not knowing where to turn. So, all questions are welcomed. I know I usually learn something new when a question is asked.
Good luck,
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Cla,
Some of us can handle applesauce, and others can't. Our body chemistry and genetics are all different, so everyone has to start with some basic guidelines, and work out their own custom treatment plan, including meds, if meds are part of the plan.
As far as staying on a severely restricted diet is concerned, some of have to deal with many more restrictions than others, of course, but for many of us with malabsorption issues, we really don't have much choice but to stay on a restricted diet for as long as necessary, because if we don't, the inflammation will never subside, and as long as that is the case, the malabsorption of nutrients will continue. It doesn't do much good to eat a "healthy", balanced diet, if we can't absorb the nutrients from it, because of inflammation and diarrhea.
I'm sorry to have to bring this up, because I have no idea what sort of "natural" NSAID you are taking, and what it's specific properties might be, but in general, NSAIDs may possibly be the primary cause of triggering MC in the first place. MC can be triggered by many events, including various types of enteritis caused by viruses, bacteria, or parasites, stopping a long-term smoking habit, and many medications, including, (but not limited to), NSAIDS, SSRIs, PPIs, etc., but NSAIDS are one of the most commonly-mentioned triggers for the disease. For example, in this study, published in 2007, 46.2 percent of people with MC were using NSAIDs, at the onset of the disease:
http://www.ncbi.nlm.nih.gov/pubmed/17100977
Many members here, attribute their development of MC to long-term use of NSAIDs. The only "safe" OTC painkiller that can be used with MC, is acetaminophen, (Tylenol). Of course, there are opioid-based prescription painkillers available, that are safe to use, (except for the addiction problem, of course).
Of course, there are also some natural painkillers that can be used, such as boswellia serrata extract, for example. There are probably others. If you don't mind revealing what you are using, what is the natural NSAID that you are using? There's a possibility that it may not be a risk. If you can't get your symptoms under control, though, you may have to try discontinuing the use of it for a while, to see if it is the problem. For some people whose MC was caused by a medication, just discontinuing the use of the med, can bring permanent remission. That doesn't work for everyone in that position, though.
As Jan said, don't be afraid to ask questions. It's much better to ask questions, than to continue to suffer in silence. The main thing is to get your MC symptoms under control ASAP, and then you can fine-tune your diet and meds, and everything else.
Tex
Some of us can handle applesauce, and others can't. Our body chemistry and genetics are all different, so everyone has to start with some basic guidelines, and work out their own custom treatment plan, including meds, if meds are part of the plan.
As far as staying on a severely restricted diet is concerned, some of have to deal with many more restrictions than others, of course, but for many of us with malabsorption issues, we really don't have much choice but to stay on a restricted diet for as long as necessary, because if we don't, the inflammation will never subside, and as long as that is the case, the malabsorption of nutrients will continue. It doesn't do much good to eat a "healthy", balanced diet, if we can't absorb the nutrients from it, because of inflammation and diarrhea.
I'm sorry to have to bring this up, because I have no idea what sort of "natural" NSAID you are taking, and what it's specific properties might be, but in general, NSAIDs may possibly be the primary cause of triggering MC in the first place. MC can be triggered by many events, including various types of enteritis caused by viruses, bacteria, or parasites, stopping a long-term smoking habit, and many medications, including, (but not limited to), NSAIDS, SSRIs, PPIs, etc., but NSAIDS are one of the most commonly-mentioned triggers for the disease. For example, in this study, published in 2007, 46.2 percent of people with MC were using NSAIDs, at the onset of the disease:
http://www.ncbi.nlm.nih.gov/pubmed/17100977
Many members here, attribute their development of MC to long-term use of NSAIDs. The only "safe" OTC painkiller that can be used with MC, is acetaminophen, (Tylenol). Of course, there are opioid-based prescription painkillers available, that are safe to use, (except for the addiction problem, of course).
Of course, there are also some natural painkillers that can be used, such as boswellia serrata extract, for example. There are probably others. If you don't mind revealing what you are using, what is the natural NSAID that you are using? There's a possibility that it may not be a risk. If you can't get your symptoms under control, though, you may have to try discontinuing the use of it for a while, to see if it is the problem. For some people whose MC was caused by a medication, just discontinuing the use of the med, can bring permanent remission. That doesn't work for everyone in that position, though.
As Jan said, don't be afraid to ask questions. It's much better to ask questions, than to continue to suffer in silence. The main thing is to get your MC symptoms under control ASAP, and then you can fine-tune your diet and meds, and everything else.
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 there,
This will be brief, but wouldn't do the spelt or kamut, same as other glutens.
Often times people will think those two can be substituted for the usual barley, rye, oats, and wheat -- not so! I hate it when the stores will put spelt products right next to the GF products. Just ignorance, I guess, but still...
I'm curious -- how many hours after ingesting it do you consider a reaction you've had to a food? When my sister didn't know any better, she'd think that the trots to the bathroom immediately after she'd eaten something (oily foods, spicy foods, etc.) were the cause of her diarrhea and cramps. She could never quite figure out why sometimes she could eat something LESS greasy or spicy with no problem, yet another time, she'd eat something much greasier or spicier with NO reaction. (She was in the early stages whereas my condition had been worsening over many years til I got on the right diet.)
I finally convinced her that she wasn't reacting to what she'd just eaten, but rather, something she'd had a day or so ago. Once she did her first elimination of all gluten (easy to do as I was eating gf by then) she'd notice that she could eat greasy or spicy foods with no problem. We have the same genotype for the HDL-DQ genes -- HDL DQ 1,2, and also, the same food sensitivities which are very common among our members. Egg white sensitivity doesn't seem to be as common, but we both have that as well.
The only way to know, besides the stool testing Tex mentioned, is to completely eliminate ALL of these sources of gluten all the time to know for sure. The reason I did the stool tests in the first place was because once I got totally off of it, the body pain got so much better, and the liquid stools began to slow down remarkably. In a way, I was lucky that I had that pain since the diarrhea didn't totally go away without the other eliminations or I might've not tested or else just thought I was gluten sensitive with no other sensitivities, and would just have to live with a little diarrhea all the time. It was sooo great just not to have that pain! My sister's wasn't that advanced, but she didn't want to be, so she followed my lead, and has been free of symptoms as well.
My suggestion would be to leave off one thing at a time (the whole family of foods in the particular related foods faithfully and consistently, even in minute quantities), before eliminating the next thing on the list. This is an all or none kind of thing, kind of like being pregnant without anything to look forward to! Ha! Be sure to do this until you are sure you aren't missing any minute amounts added to foods, like in injected chickens, for example, before you remove the next thing on the list.
Oh, and when I eliminated gluten, I used lactose free products until I discovered I was also reacting to the protein, casein, and couldn't then have any dairy. Once dairy was added to the list (and every form of added casein, as in margarines flavored with it), along with the gluten I was already totally off of, removing both at the same time was another huge "bang for my buck." After that, since I didn't eat eggs but twice a week, and yeast was a pretty much moot issue, and soy in any significant quantity (until those delicious frozen waffles -- sigh!), it wasn't too hard to figure out that my reactions were to eggs since the bigger ones only occurred twice a week. I figured out the soy after I had a huge reaction to the soy waffles that I unfortunately was only able to eat that one time. Unfortunately, the soy test wasn't for sale at that time, but I verified the soy sensitivity as soon as it was available, and it was indeed positive. After the confirmation, I started checking labels carefully for any form of soy, including oils and medications, also, the infrequent use of Wheat Free soy sauce that is so delicious, and left them off. That meant I wasn't having diarrhea, even in small amounts, and my stools worked their way up through the stages toward the formed, normal looking ones at a pretty fast clip. Since I mostly eat at home, if I slip up and buy something with food additive in it that is made from gluten, in particular, I can always find it on the label I didn't read carefully, but this almost never happens anymore.
One reason I'm glad that I didn't try to eliminate everything at once is because if I'd gone to a formed, normal stool right away, without my gut muscles having had any exercise in years (no formed stools in memory!), I might've ripped myself and bled to death, or at least it would've been painful!
I am fortunate in that I didn't have to have any medications to get better, but there are others here who found that necessary, and perhaps a little more convenient at times as most people are out and about more than I. Only thing about the meds is that if they work, it's a little harder to evaluate the effects of removing each thing from the diet is.
This is a trial and error thing, but do it systematically if you go the elimination route, and take your time with each one.
However, since it sounds as though you are pretty much off of most everything now anyway, you might want to try an altered version of the traditional brat diet that has worked in the beginning for some, just so that they could get things under control. If I remember correctly, our brat here stood for bananas, rice, apple sauce, and tea (unflavored, of course). Since the apple sauce doesn't seem to be working for you, how do you do with pears? In stead of zucchini, have you tried cooking yellow squash until it's really, really soft?
One thing that's pretty easy to do if you want some of the vitamins from the foods, but can't yet tolerate them, is to fix some frozen vegetables that are free of additives, other than salt, perhaps, by boiling them in water with some nice seasonings, but not too much. Then, pour off the liquid and drink it, and feed your family the cooked vegetables. Remember, one reason it is often suggested that people steam the vegetables is because the nutrients leach into the boiling water, and are usually just thrown out, and only the vegetables are eaten.
Also, because of ease of preparation, I used to always recommend using one of those boiling bags of white rice that Uncle Ben's makes. Depending upon which store you go, you can find different serving sizes per box. Sometimes it's just nice to not have to fool with all the leftovers when you don't feel good.
I never had a problem with their product.
Be sure to check your spices by calling the 800 no. if you don't know for sure.
McCormick's brand, their single spices, but perhaps not the blends, will always list in parentheses, most likely, the source of the ingredients. This has only come about recently. It's really gotten easier in the last few years because of things like this.
Perhaps the chicken broths that are free of additives wouldn't bother you? You could even mix them with the vegetable water for a while.
Are you taking anything to replace your electrolytes? If so, take note of your reaction to those as they contain corn, and we do have a few people who can't have corn. I've never had a noticeable reaction to corn -- eat gf corn tortillas all the time. Hope you'll be able to work up to that -- good substitute for bread.
Also, there are some other things that commonly accompany some of these gut conditions such as ours, some of which will go away on the sensitivity-free diet that most of us are on. Others will need further intervention, like being unable to handle various sugars (there are tests for that you can get a doc to run on you, most likely covered by insurance with the appropriate symptoms, and possibly infections, etc.
Most of us didn't find any benefit from taking probiotics, but most have dairy, anyway. I did find one in the cooler section of the vitamin dept at Whole Foods. It was a nicely flavored chewable form that didn't contain any dairy, or other common allergens either, so no problem for most of us. This stuff is expensive, so if you can get things under control without it, then save it for a last resort. Could be that the dysbiosis gets better on it's own once we start to make progress on the diet.
You may have already covered these bases, but I just wasn't sure you were staying totally off of each thing you removed, and doing it long enough. I know that if you are still eating ANY spelt, or kamut, that you are not trying the gluten free diet at this time. If you have learned to love that stuff, it may be the opiate reaction that folks have to things they have immune responses to -- just a nasty trick that nature plays on us -- cruel, I know! Ha!
Keep your spirits high. This can get better, and with this group of crazy folks to help you along, you're off to a good start!
Yours, Luce
This will be brief, but wouldn't do the spelt or kamut, same as other glutens.
Often times people will think those two can be substituted for the usual barley, rye, oats, and wheat -- not so! I hate it when the stores will put spelt products right next to the GF products. Just ignorance, I guess, but still...
I'm curious -- how many hours after ingesting it do you consider a reaction you've had to a food? When my sister didn't know any better, she'd think that the trots to the bathroom immediately after she'd eaten something (oily foods, spicy foods, etc.) were the cause of her diarrhea and cramps. She could never quite figure out why sometimes she could eat something LESS greasy or spicy with no problem, yet another time, she'd eat something much greasier or spicier with NO reaction. (She was in the early stages whereas my condition had been worsening over many years til I got on the right diet.)
I finally convinced her that she wasn't reacting to what she'd just eaten, but rather, something she'd had a day or so ago. Once she did her first elimination of all gluten (easy to do as I was eating gf by then) she'd notice that she could eat greasy or spicy foods with no problem. We have the same genotype for the HDL-DQ genes -- HDL DQ 1,2, and also, the same food sensitivities which are very common among our members. Egg white sensitivity doesn't seem to be as common, but we both have that as well.
The only way to know, besides the stool testing Tex mentioned, is to completely eliminate ALL of these sources of gluten all the time to know for sure. The reason I did the stool tests in the first place was because once I got totally off of it, the body pain got so much better, and the liquid stools began to slow down remarkably. In a way, I was lucky that I had that pain since the diarrhea didn't totally go away without the other eliminations or I might've not tested or else just thought I was gluten sensitive with no other sensitivities, and would just have to live with a little diarrhea all the time. It was sooo great just not to have that pain! My sister's wasn't that advanced, but she didn't want to be, so she followed my lead, and has been free of symptoms as well.
My suggestion would be to leave off one thing at a time (the whole family of foods in the particular related foods faithfully and consistently, even in minute quantities), before eliminating the next thing on the list. This is an all or none kind of thing, kind of like being pregnant without anything to look forward to! Ha! Be sure to do this until you are sure you aren't missing any minute amounts added to foods, like in injected chickens, for example, before you remove the next thing on the list.
Oh, and when I eliminated gluten, I used lactose free products until I discovered I was also reacting to the protein, casein, and couldn't then have any dairy. Once dairy was added to the list (and every form of added casein, as in margarines flavored with it), along with the gluten I was already totally off of, removing both at the same time was another huge "bang for my buck." After that, since I didn't eat eggs but twice a week, and yeast was a pretty much moot issue, and soy in any significant quantity (until those delicious frozen waffles -- sigh!), it wasn't too hard to figure out that my reactions were to eggs since the bigger ones only occurred twice a week. I figured out the soy after I had a huge reaction to the soy waffles that I unfortunately was only able to eat that one time. Unfortunately, the soy test wasn't for sale at that time, but I verified the soy sensitivity as soon as it was available, and it was indeed positive. After the confirmation, I started checking labels carefully for any form of soy, including oils and medications, also, the infrequent use of Wheat Free soy sauce that is so delicious, and left them off. That meant I wasn't having diarrhea, even in small amounts, and my stools worked their way up through the stages toward the formed, normal looking ones at a pretty fast clip. Since I mostly eat at home, if I slip up and buy something with food additive in it that is made from gluten, in particular, I can always find it on the label I didn't read carefully, but this almost never happens anymore.
One reason I'm glad that I didn't try to eliminate everything at once is because if I'd gone to a formed, normal stool right away, without my gut muscles having had any exercise in years (no formed stools in memory!), I might've ripped myself and bled to death, or at least it would've been painful!
I am fortunate in that I didn't have to have any medications to get better, but there are others here who found that necessary, and perhaps a little more convenient at times as most people are out and about more than I. Only thing about the meds is that if they work, it's a little harder to evaluate the effects of removing each thing from the diet is.
This is a trial and error thing, but do it systematically if you go the elimination route, and take your time with each one.
However, since it sounds as though you are pretty much off of most everything now anyway, you might want to try an altered version of the traditional brat diet that has worked in the beginning for some, just so that they could get things under control. If I remember correctly, our brat here stood for bananas, rice, apple sauce, and tea (unflavored, of course). Since the apple sauce doesn't seem to be working for you, how do you do with pears? In stead of zucchini, have you tried cooking yellow squash until it's really, really soft?
One thing that's pretty easy to do if you want some of the vitamins from the foods, but can't yet tolerate them, is to fix some frozen vegetables that are free of additives, other than salt, perhaps, by boiling them in water with some nice seasonings, but not too much. Then, pour off the liquid and drink it, and feed your family the cooked vegetables. Remember, one reason it is often suggested that people steam the vegetables is because the nutrients leach into the boiling water, and are usually just thrown out, and only the vegetables are eaten.
Also, because of ease of preparation, I used to always recommend using one of those boiling bags of white rice that Uncle Ben's makes. Depending upon which store you go, you can find different serving sizes per box. Sometimes it's just nice to not have to fool with all the leftovers when you don't feel good.
I never had a problem with their product.
Be sure to check your spices by calling the 800 no. if you don't know for sure.
McCormick's brand, their single spices, but perhaps not the blends, will always list in parentheses, most likely, the source of the ingredients. This has only come about recently. It's really gotten easier in the last few years because of things like this.
Perhaps the chicken broths that are free of additives wouldn't bother you? You could even mix them with the vegetable water for a while.
Are you taking anything to replace your electrolytes? If so, take note of your reaction to those as they contain corn, and we do have a few people who can't have corn. I've never had a noticeable reaction to corn -- eat gf corn tortillas all the time. Hope you'll be able to work up to that -- good substitute for bread.
Also, there are some other things that commonly accompany some of these gut conditions such as ours, some of which will go away on the sensitivity-free diet that most of us are on. Others will need further intervention, like being unable to handle various sugars (there are tests for that you can get a doc to run on you, most likely covered by insurance with the appropriate symptoms, and possibly infections, etc.
Most of us didn't find any benefit from taking probiotics, but most have dairy, anyway. I did find one in the cooler section of the vitamin dept at Whole Foods. It was a nicely flavored chewable form that didn't contain any dairy, or other common allergens either, so no problem for most of us. This stuff is expensive, so if you can get things under control without it, then save it for a last resort. Could be that the dysbiosis gets better on it's own once we start to make progress on the diet.
You may have already covered these bases, but I just wasn't sure you were staying totally off of each thing you removed, and doing it long enough. I know that if you are still eating ANY spelt, or kamut, that you are not trying the gluten free diet at this time. If you have learned to love that stuff, it may be the opiate reaction that folks have to things they have immune responses to -- just a nasty trick that nature plays on us -- cruel, I know! Ha!
Keep your spirits high. This can get better, and with this group of crazy folks to help you along, you're off to a good start!
Yours, Luce
Luce wrote:This will be brief, . . .
What would a long post be like? 
Just kidding, of course - that was a great post, full of excellent information. I totally agree with you on the spelt and kamut. Spelt has a moderate gluten content, and kamut has a high gluten content.
Wayne
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Glad you caught that Wayne! Ha! Well, the part about the spelt and kamut was brief, at least. Think that's the part I was referring to when I wrote that -- just got carried away for some reason.
I never know whether these epistles might help someone reading through, even if they don't actually help the person whose post I'm responding to.
This isn't getting the work done around here!
Be back later!
Yours, Luce
I never know whether these epistles might help someone reading through, even if they don't actually help the person whose post I'm responding to.
This isn't getting the work done around here!
Be back later!
Yours, Luce
a few more things in response to your helpful replies...
Yes, an elimination diet at this point would leave me w/o food, so i am working on an additive diet and keeping a food diary.
The NSAID is Limbrel(http://orthopedics.about.com/od/paintre ... imbrel.htm), and the electrolyte i use is E-lyte Sport Concentrate, minerals are Life Nutrients ("organic chelated mineral dietary supplement"), and probiotic is Flora Protect which i just noticed has various strains of lactobacillus - milk product, right? oops! what kind of probiotic is safe to use? i also use acacia powder for my added fiber - psyllium doesn't agree with me.
I think i may have had an "ah, ha" recently - i've been thinking a lot about this lately. I've had a sensitive stomach all my life but never the problems i'm having now (thank goodness for that!). When i was 10 years old, i remember walking to school everyday and having to stop about a block from my house to crouch down and wait for the abdominal cramps to stop before i continued to school. I didn't think anything of it and i don't think i ever even told anyone. then growing up, if i got nervous or upset about anything - it was dia. time - again i just thought everyone else was the same way. At 42 i had a sigmoidectomy for diverticular disease and it pretty much destroyed my motility so mostly had constipation problems since then. At 45 after having a hysterectomy i had a surgery to suture part of my intestines to my abdominal wall - they had pooled in the bottom of my abdomin (i'm about 5'11" and didn't have my uterus to keep things in the proper position anymore) and a loop of one got caught up in a loop of the other one and herniating it. So, now my intestines really don't have any chance of moving food thru like they're supposed to. Last year in the spring, i had bad gas, bloating and constipation that lasted for about 6 months - again, i made no connection with anything except poor motility and thinking that i needed to watch my spices. it finally abated once i started working with my homeopath in Sept. Now, i'm thinking that all these things in my past are probably related in some way - not that it solves my problem, just an interesting thought that helps me come to terms with what's happening.
2 questions for Luce - what should i be checking on spices? I can't tolerate anything but salt right now, but when i can, what is it i'm to watch out for? Also, two people have mentioned genetic issues with this - what are they and how can you find out your genetic propensities?
Does anyone have Crohn's too? Dr didn't find it in endoscopy or colonoscopy but said he only gets to the ends of the small intesting - can't get to anything in the middle 24 feet. He tested for "sprue" but tests results are not back yet. Homeopath found two indicators for it.
As to the Entocort - i only want to take it until these symptoms subside and then i want to just work to figure out a workable long term diet plan. i'd like to just use the Entocort for flares that i hope to minimize by educating myself and being disciplined enough to eat well to stay well. (i just hope that's not being too optimistic - gotta admit it seems a long way off right now *sigh*...).
Carole
The NSAID is Limbrel(http://orthopedics.about.com/od/paintre ... imbrel.htm), and the electrolyte i use is E-lyte Sport Concentrate, minerals are Life Nutrients ("organic chelated mineral dietary supplement"), and probiotic is Flora Protect which i just noticed has various strains of lactobacillus - milk product, right? oops! what kind of probiotic is safe to use? i also use acacia powder for my added fiber - psyllium doesn't agree with me.
I think i may have had an "ah, ha" recently - i've been thinking a lot about this lately. I've had a sensitive stomach all my life but never the problems i'm having now (thank goodness for that!). When i was 10 years old, i remember walking to school everyday and having to stop about a block from my house to crouch down and wait for the abdominal cramps to stop before i continued to school. I didn't think anything of it and i don't think i ever even told anyone. then growing up, if i got nervous or upset about anything - it was dia. time - again i just thought everyone else was the same way. At 42 i had a sigmoidectomy for diverticular disease and it pretty much destroyed my motility so mostly had constipation problems since then. At 45 after having a hysterectomy i had a surgery to suture part of my intestines to my abdominal wall - they had pooled in the bottom of my abdomin (i'm about 5'11" and didn't have my uterus to keep things in the proper position anymore) and a loop of one got caught up in a loop of the other one and herniating it. So, now my intestines really don't have any chance of moving food thru like they're supposed to. Last year in the spring, i had bad gas, bloating and constipation that lasted for about 6 months - again, i made no connection with anything except poor motility and thinking that i needed to watch my spices. it finally abated once i started working with my homeopath in Sept. Now, i'm thinking that all these things in my past are probably related in some way - not that it solves my problem, just an interesting thought that helps me come to terms with what's happening.
2 questions for Luce - what should i be checking on spices? I can't tolerate anything but salt right now, but when i can, what is it i'm to watch out for? Also, two people have mentioned genetic issues with this - what are they and how can you find out your genetic propensities?
Does anyone have Crohn's too? Dr didn't find it in endoscopy or colonoscopy but said he only gets to the ends of the small intesting - can't get to anything in the middle 24 feet. He tested for "sprue" but tests results are not back yet. Homeopath found two indicators for it.
As to the Entocort - i only want to take it until these symptoms subside and then i want to just work to figure out a workable long term diet plan. i'd like to just use the Entocort for flares that i hope to minimize by educating myself and being disciplined enough to eat well to stay well. (i just hope that's not being too optimistic - gotta admit it seems a long way off right now *sigh*...).
Carole
Carole,
Judging by the description on the site you listed, Limbrel should be safe to use, (theoretically, at least). Thanks for bringing that option to our attention. Maybe someone else can use it.
It's not really the strain of bacteria that matters, so much as the way they are cultured, IOW, whether they are grown on a dairy base. Many are.
I suspect that you're probably right - some of those digestive system issues you mentioned from your past, may well be connected with what is going on now.
We have members who have celiac disease, and a few with ulcerative colitis, but I don't believe we have any members with Crohn's. Why do you suspect that you might have Crohn's? Do you ever pass any blood? MC has a bad habit of irritating hemorrhoids, which can sometimes bleed, but that can usually be settled down by one of the many zinc oxide ointments on the market.
Your treatment plan sounds good. That should work.
Tex
Judging by the description on the site you listed, Limbrel should be safe to use, (theoretically, at least). Thanks for bringing that option to our attention. Maybe someone else can use it.
It's not really the strain of bacteria that matters, so much as the way they are cultured, IOW, whether they are grown on a dairy base. Many are.
I suspect that you're probably right - some of those digestive system issues you mentioned from your past, may well be connected with what is going on now.
We have members who have celiac disease, and a few with ulcerative colitis, but I don't believe we have any members with Crohn's. Why do you suspect that you might have Crohn's? Do you ever pass any blood? MC has a bad habit of irritating hemorrhoids, which can sometimes bleed, but that can usually be settled down by one of the many zinc oxide ointments on the market.
Your treatment plan sounds good. That should work.
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 Carole, I'm a fellow Utahn and just want to welcome you and tell you what a great place you have found. I was suffering terribly last fall and into the winter when I found this board. They have helped me put my life back together by getting tested through enterolab and finding that I am gluten,dairy, soy and egg sensitive. They have walked me through diet and medication issues. I started entocort last Feb. and will start tapering the end of Aug. You won't find better help anywhere. My pcp uses an integrative approach and has been very interested in the information I share with her from this site. I actually think it has helped others in her practice. I don't think I can add anything to the great advice you've already received. Just know you aren't alone and things will get better, JoAnn
Carole,
It does seem that any "tinkering around" in the gut or around the gut can lead to problems or worsen them, but ya gotta do whatcha gotta do. I think the colitis part of my problems got started after a major surgery on my innards, at least I can't remember having episodes like that before. Did have a few things undoubtedly related to gluten sensitivity, in retrospect.
In terms of the spices, if they bother you, I wouldn't eat them yet, additives or not. What we who have sensitivities look for is ingredients in those made from the foods we have immune reactions to -- that just shows how small an amount it takes to set us off.
In terms of genetics, have you had the typical celiac gene test? If you do the blood test you will only get back the main genes for celiac -- HLA-DQ-2, and DQ-8. On the other hand, you can do Enterolab's for maybe half the price, and get more information -- other relevent genes, and without a doc's order, all by mail. If you do get an order, I think you should be able to file it with insurance as you have a legit reason for doing that test, if it's not already done. Should go through just fine with the correct coding, but one never knows these days. I believe that EL farms out the genetic tests to another lab, probably has the same certifications as EL, but you could inquire with them when you inquire about the genetic test. This information, however, won't tell you that you are gluten sensitive, just that you have the propensity, but something has to set the disease off in the first place.
Keep reading and studying. It's not unusual to feel like your brain is going to exploid right at first, with all the things we learn here and at the celiac sites, etc., but it gets way better as things become routine eventually.
Yours,Luce
It does seem that any "tinkering around" in the gut or around the gut can lead to problems or worsen them, but ya gotta do whatcha gotta do. I think the colitis part of my problems got started after a major surgery on my innards, at least I can't remember having episodes like that before. Did have a few things undoubtedly related to gluten sensitivity, in retrospect.
In terms of the spices, if they bother you, I wouldn't eat them yet, additives or not. What we who have sensitivities look for is ingredients in those made from the foods we have immune reactions to -- that just shows how small an amount it takes to set us off.
In terms of genetics, have you had the typical celiac gene test? If you do the blood test you will only get back the main genes for celiac -- HLA-DQ-2, and DQ-8. On the other hand, you can do Enterolab's for maybe half the price, and get more information -- other relevent genes, and without a doc's order, all by mail. If you do get an order, I think you should be able to file it with insurance as you have a legit reason for doing that test, if it's not already done. Should go through just fine with the correct coding, but one never knows these days. I believe that EL farms out the genetic tests to another lab, probably has the same certifications as EL, but you could inquire with them when you inquire about the genetic test. This information, however, won't tell you that you are gluten sensitive, just that you have the propensity, but something has to set the disease off in the first place.
Keep reading and studying. It's not unusual to feel like your brain is going to exploid right at first, with all the things we learn here and at the celiac sites, etc., but it gets way better as things become routine eventually.
Yours,Luce