Hi everyone,
I've been perusing this forum for a few weeks and finally got around to joining. I'm 26 and a graduate student. I've had D and loose stools for the past 2+ years and thought I might have UC or Crohn's. I had many tests done: multiple stool tests (negative), MRI (negative), sonogram (negative) (I also had an endometrial cyst removed from my abdomen a year ago), H+ breath test (positive), blood panel for celiac (negative). I finally got up the nerve to get a colonoscopy and was diagnosed with lymphocytic colitis in March 2010.
Before that, I had researched Crohn's and UC and discovered the Specific Carbohydrate Diet (SCD). I tried it for a month but must have been in a flare, because I got worse and lost about 8% of my body weight. Then I had the colonoscopy, got the MC diagnosis, and lived the dream (read: carb-fest) for a few weeks. The doc started me on Entocort (9mg daily, will reduce gradually) and I also started taking one Imodium a day. This has helped tremendously in allowing my body to finally absorb some nutrients, and I have gained back most of the weight.
I'm wondering if I should get the Enterolab test for gluten sensitivity, even though my blood panel came back negative for celiac. I can only afford one or two tests at the moment. I don't think I have a sensitivity to dairy, as I can eat ice cream and not notice any gas/grumbling/etc. Offenders so far include broccoli (even steamed), raw cucumbers, and whole nuts. From reading this forum, it seems these are pretty common. In your experience, do reactions typically occur within 30 minutes of eating a certain food?
I just started a gluten free diet this week. I really want to believe that SCD would work, but figure I'll try the less restrictive diet first. I already am a pro at making SCD yogurt, however. :o) I've been keeping a food diary for the past several months, but it's still hard to tell if I have any additional intolerances. I know it takes time. I guess I'm just a little confused on what to try next, or if I should get additional testing (Enterolab) so that I know for sure if I have an intolerance from something. The elimination diet takes time, and it sure was nice to find out for certain that I have MC, and that that's why I've been having problems for the past two-plus years. If I could only afford one or two Enterolab tests, which one(s) should I get??
Any advice is much appreciated. Looking forward to learning more about this process and sharing my experiences.
Thanks,
Gowest
Hello: New to the forum!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Gowest,
Welcome to our internet family. You've done enough research to have a pretty good idea of what you need to do. Reactions can occur anywhere from 10 minutes after eating a problem food, to 2 days or more later, depending on the food, and on the individual's sensitivity. We are all different in our reactions, and in our responses to drugs and dieting. Most of us are sensitive to both gluten and casein, (the primary protein in dairy food), and about half of us are sensitive to soy. Other intolerances are possible, but not as likely. Many foods are irritants, (but do not cause an autoimmune reaction, the way that gluten, dairy, soy, etc., do). Irritants include foods with a lot of fiber, and especially raw fruits and vegetables. Nuts are a problem for many members here, but some do OK with nut butters.
Unless we have fully-developed celiac disease, (in addition to MC), the classic celiac blood tests will always yield a negative result for us, even though we are just as sensitive to gluten as the average celiac. The fastest way to reach remission is to take Entocort EC, and eliminate gluten, dairy, and soy from the diet. After you have been in remission for a while, (to allow the gut to heal), then you can try adding foods, (such as diary), back into your diet. The biggest problem with the elimination diet is that if your diet includes a single food to which you are intolerant, then you will continue to flare, and it is impossible to judge reactions objectively, when in a flare. Of course, as long as you are taking Entocort, it may effectively mask the symptoms, so you may not be able to accurately access your intolerances until after the Entocort is discontinued.
It's certainly possible that you may not be sensitive to casein, but that might be a good one to have tested at Enterolab, because statistically, the odds are stacked against you.
Again, welcome aboard. Please feel free to ask anything, and please keep us updated on your progress - we learn from each other, so occasional updates are very valuable to other members.
Tex (Wayne)
Welcome to our internet family. You've done enough research to have a pretty good idea of what you need to do. Reactions can occur anywhere from 10 minutes after eating a problem food, to 2 days or more later, depending on the food, and on the individual's sensitivity. We are all different in our reactions, and in our responses to drugs and dieting. Most of us are sensitive to both gluten and casein, (the primary protein in dairy food), and about half of us are sensitive to soy. Other intolerances are possible, but not as likely. Many foods are irritants, (but do not cause an autoimmune reaction, the way that gluten, dairy, soy, etc., do). Irritants include foods with a lot of fiber, and especially raw fruits and vegetables. Nuts are a problem for many members here, but some do OK with nut butters.
Unless we have fully-developed celiac disease, (in addition to MC), the classic celiac blood tests will always yield a negative result for us, even though we are just as sensitive to gluten as the average celiac. The fastest way to reach remission is to take Entocort EC, and eliminate gluten, dairy, and soy from the diet. After you have been in remission for a while, (to allow the gut to heal), then you can try adding foods, (such as diary), back into your diet. The biggest problem with the elimination diet is that if your diet includes a single food to which you are intolerant, then you will continue to flare, and it is impossible to judge reactions objectively, when in a flare. Of course, as long as you are taking Entocort, it may effectively mask the symptoms, so you may not be able to accurately access your intolerances until after the Entocort is discontinued.
It's certainly possible that you may not be sensitive to casein, but that might be a good one to have tested at Enterolab, because statistically, the odds are stacked against you.
Again, welcome aboard. Please feel free to ask anything, and please keep us updated on your progress - we learn from each other, so occasional updates are very valuable to other members.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
G'day Gowest
greetings from Australia.
I too was recently diagnosed (dec 09) I found this site within 2 days of diagnosis. If you have the time i can recommended browsing the different topics and even doing a search via the PP search
I am doing Gluten Free/ Yeast Free/ Lactose Free diet of cave man food (well cooked not very many ingredients) natural supplements and a small amount of meds just to keep the balance (and ensure i am well enough to work)
my quick advice is
everyone is different, intolerances, reactions, treatments etc it is a bit of trial and error, some days it will feel like you are lost forever in a deep dark maze and there is no way out!
never fear..... the MC family will give you the hints and show you the way out of the dark maze.
be patient... unfortunately there are no short cuts or easy fixes.
as tex said feel free to ask anything, there are no embarrassing or taboo subjects.... this is the one place that you can talk about poop, gas etc
only in the last week we have talked about our hobby of poop watching! (not something i will be putting on my resume)
good luck digesting all the information (yep the pun is intended)
greetings from Australia.
I too was recently diagnosed (dec 09) I found this site within 2 days of diagnosis. If you have the time i can recommended browsing the different topics and even doing a search via the PP search
I am doing Gluten Free/ Yeast Free/ Lactose Free diet of cave man food (well cooked not very many ingredients) natural supplements and a small amount of meds just to keep the balance (and ensure i am well enough to work)
my quick advice is
everyone is different, intolerances, reactions, treatments etc it is a bit of trial and error, some days it will feel like you are lost forever in a deep dark maze and there is no way out!
never fear..... the MC family will give you the hints and show you the way out of the dark maze.
be patient... unfortunately there are no short cuts or easy fixes.
as tex said feel free to ask anything, there are no embarrassing or taboo subjects.... this is the one place that you can talk about poop, gas etc
only in the last week we have talked about our hobby of poop watching! (not something i will be putting on my resume)
good luck digesting all the information (yep the pun is intended)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Tex and Gabes for the responses! I decided to go forward with the gluten-sensitivity and casein-sensitivity tests from Enterolab... I'll be curious to see what the results are! I've been feeling pretty good for the past couple of weeks (formed stools), except for the past couple of days. I think some corn on the cob sent me into a mini-flare. :oP
I'll keep perusing the boards for more info. There's a lot of it on here!
Thanks,
Gowest
I'll keep perusing the boards for more info. There's a lot of it on here!
Thanks,
Gowest
Yep, corn on the cob is a pretty good laxative for most of us, it even works for a lot of people who don't have MC.
Please let us know how your test results turn out.
Tex
Please let us know how your test results turn out.
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.
Gowest,
Welcome to the board. You have been given great advice. Continue reading and you'll learn a lot from fellow MCers.
Gloria
Welcome to the board. You have been given great advice. Continue reading and you'll learn a lot from fellow MCers.
Amen to that, Tex.Tex wrote:The biggest problem with the elimination diet is that if your diet includes a single food to which you are intolerant, then you will continue to flare, and it is impossible to judge reactions objectively, when in a flare.
Gloria
You never know what you can do until you have to do it.
Hello Gowest, also welcome here, others already answered most of your questions. As long as the gut is not healed, it is not always easy to figure what food is causing the problems and especially why. As tex is saying "Many foods are irritants, (but do not cause an autoimmune reaction, the way that gluten, dairy, soy, etc., do)". That is why I think doing some enterolab testing is a wise decision.
You also mentioned something about corn. As soon as you start to eat gluten free and going to buy gluten free stuff from health shops of from the gluten free shell in the supermarket, you will find out lots of these products contain corn. So be aware of that and be careful with it. During my whole MC period, I never have had so much pain and cramps as when I started to eat those gluten free product. IMO you are so much better of with simple plain - one ingredient - product (like Gabes is saying the caveman food).
good luck with it, take a look around here and ask as many questions as you like.
harma
You also mentioned something about corn. As soon as you start to eat gluten free and going to buy gluten free stuff from health shops of from the gluten free shell in the supermarket, you will find out lots of these products contain corn. So be aware of that and be careful with it. During my whole MC period, I never have had so much pain and cramps as when I started to eat those gluten free product. IMO you are so much better of with simple plain - one ingredient - product (like Gabes is saying the caveman food).
good luck with it, take a look around here and ask as many questions as you like.
harma
Gowest,
I would like to welcome you to this forum also. I do not have as much time as I would like to come on here because when I do, I always learn something new.....and not just about LC.
I am one of the few on here who does not have any trouble with eating wheat or dairy or even soy. I did give up wheat, but only for a short time....but saw no improvement. In fact when I eat white bread my stools are great!
I don't have a problem with milk products, but have begun to drink soymilk moreso (instead of milk) in the past few months and it doesn't give me any problems with D.
From my personal experience I have to avoid raw veggies and nuts and other high fiber fruits and veggies. I gave them up early on and found a huge improvement with my LC.
The only medication that I took (with a prescription) after being diagnosed with LC was Benytl, however it made me so drowsy I had to discontinue it even though it did help control diarrhea.
So for the past three years I mostly took Immodium. In the first year I probably took it a couple of times a week. As time went on I managed to cut back on my dosage. I rarely take it....unless I have a flare......which is not very often.
I think the inflammation in my colon has pretty much healed because I have not eaten high fiber foods which can irritate it.
I may even be able to eat some raw veggies now......but I don't want to take the chance.
In my own case, I stay clear of lettuce, celery, spinach and onions that are uncooked. And if they are cooked I eat very little.
I also have to stay clear up peas and nuts. It's a small price to pay for return to normal BM's.
I know a lot of folks on here have used Enterolab, but I am not one. His tests (if I am not mistaken) are not covered by most insurance companies....... certainly not mine which is a very large insurance company.
I think if you are going to spend a lot of money with Enterolab, you are going to find out that you are either gluten, dairy or soy intolerant. This seems to be the case with most people who send their stool samples to Enterolab.
Therefore, why not just do an elimination diet and see if your symptoms improve.......ie......less frequent diarrhea. You certainly can do that and it won't cost you anything.
Keep in mind though, that as long as you are taking something like Entocort, your D should improve, regardless of what you are eating.
That is why I chose not to take any steroids or strong medication after I was diagnosed with LC. I wanted to know exactly what foods were contributing to my D. Once I kept a diary it was easy to see how certain foods were more difficult to handle than others.
However, if you are having serious issues with D....and it is interferring with your ability to live a normal life.....then I would definitely consider taking Entocort.
As far as diet, I strongly suggest you eat well cooked foods to help your gut to heal. White rice and well cooked veggies along with some well cooked ......and finely shredded meat, poultry or fish should be well tolerated. If you can handle eggs, then they are a great source of protein. I practically ate them three times a day. Stay away from fruits with skins. Remove the skin before eating.
Good luck,
Issy
I would like to welcome you to this forum also. I do not have as much time as I would like to come on here because when I do, I always learn something new.....and not just about LC.
I am one of the few on here who does not have any trouble with eating wheat or dairy or even soy. I did give up wheat, but only for a short time....but saw no improvement. In fact when I eat white bread my stools are great!
I don't have a problem with milk products, but have begun to drink soymilk moreso (instead of milk) in the past few months and it doesn't give me any problems with D.
From my personal experience I have to avoid raw veggies and nuts and other high fiber fruits and veggies. I gave them up early on and found a huge improvement with my LC.
The only medication that I took (with a prescription) after being diagnosed with LC was Benytl, however it made me so drowsy I had to discontinue it even though it did help control diarrhea.
So for the past three years I mostly took Immodium. In the first year I probably took it a couple of times a week. As time went on I managed to cut back on my dosage. I rarely take it....unless I have a flare......which is not very often.
I think the inflammation in my colon has pretty much healed because I have not eaten high fiber foods which can irritate it.
I may even be able to eat some raw veggies now......but I don't want to take the chance.
In my own case, I stay clear of lettuce, celery, spinach and onions that are uncooked. And if they are cooked I eat very little.
I also have to stay clear up peas and nuts. It's a small price to pay for return to normal BM's.
I know a lot of folks on here have used Enterolab, but I am not one. His tests (if I am not mistaken) are not covered by most insurance companies....... certainly not mine which is a very large insurance company.
I think if you are going to spend a lot of money with Enterolab, you are going to find out that you are either gluten, dairy or soy intolerant. This seems to be the case with most people who send their stool samples to Enterolab.
Therefore, why not just do an elimination diet and see if your symptoms improve.......ie......less frequent diarrhea. You certainly can do that and it won't cost you anything.
Keep in mind though, that as long as you are taking something like Entocort, your D should improve, regardless of what you are eating.
That is why I chose not to take any steroids or strong medication after I was diagnosed with LC. I wanted to know exactly what foods were contributing to my D. Once I kept a diary it was easy to see how certain foods were more difficult to handle than others.
However, if you are having serious issues with D....and it is interferring with your ability to live a normal life.....then I would definitely consider taking Entocort.
As far as diet, I strongly suggest you eat well cooked foods to help your gut to heal. White rice and well cooked veggies along with some well cooked ......and finely shredded meat, poultry or fish should be well tolerated. If you can handle eggs, then they are a great source of protein. I practically ate them three times a day. Stay away from fruits with skins. Remove the skin before eating.
Good luck,
Issy
IssyW123
-
Olivia-Micro-Colitis
- Adélie Penguin
- Posts: 119
- Joined: Fri Mar 26, 2010 8:51 pm
- Location: Fallbrook, Ca
Hi everyone, thanks for all of your great responses and welcomes!
I apologize for the late reply; I was finishing up grad school and will hopefully have more time now to relax and de-stress!
As an update: I started SCD about 5 weeks ago and also reduced my Entocort to 6mg after the first 6 weeks of taking it. Things have been pretty rocky and I have lost weight again (back down to about 104 lbs, at 5'6" -- my normal should be about 115, ideally 120). I feel like I can't eat anything on SCD, especially since learning from Enterolab that I am gluten- and casein-intolerant (no more homemade yogurt for me). :o( But could I try goat's milk yogurt??
I talked with my doctor and am going to increase my Entocort to 9mg again -- he said 6 weeks to reduce it is the bare minimum. How long has it taken for you to reduce your dosage, for those of you on Entocort?
I think I may have an issue with certain fats... ground beef and ground pork in particular. Today was very frustrating and depressing after eating ground beef patties and steamed, peeled carrots and zucchini - major cramping and D. So I did some more research and decided to add in rice and the occasional potato because I need to gain weight. I had 1/2 cup cooked brown rice at dinner tonight (along with chicken thighs and sauteed asparagus w/ olive oil) and have felt fine so far *fingers crossed*. I'm planning to limit my meats to fish, and lean meats like chicken and turkey and lean pork chops, instead of fatty ground beef and pork. Does this sound about right??
Harma, I'm definitely staying away from corn! I bought Mark Sisson's "Paleo Blueprint" book and like the idea of it. It does allow some rice (preferably wild) and the occasional (preferably sweet) potato. I will pretty much be sticking to the "baby food" version of his Paleo diet, I think. I don't want to start adding in the gluten free pre-packaged goods because I felt pretty bloated when I tried them before.
I also bought some Pepto Bismol chewable tablets, ala Dr. Fine's experiment, and was thinking of adding those in (8 per day) for 8 weeks. Has anyone done this in combination with Entocort? Or just to get out of a flare?
Pat, unfortunately I don't remember if there was any other name on the lab form I saw other than "H+ Breath Test." It appeared to be different than an H Pylori test, though.
Joe, I wish you luck in your healing journey too! When do you plan to wean off Entocort? Has it helped you?
Thanks again everyone.
Gowest
LC 3/10
Entocort 9mg/day
1/2 Imodium/day
SCD five weeks -- but going to modified Paleo/GF
I apologize for the late reply; I was finishing up grad school and will hopefully have more time now to relax and de-stress!
As an update: I started SCD about 5 weeks ago and also reduced my Entocort to 6mg after the first 6 weeks of taking it. Things have been pretty rocky and I have lost weight again (back down to about 104 lbs, at 5'6" -- my normal should be about 115, ideally 120). I feel like I can't eat anything on SCD, especially since learning from Enterolab that I am gluten- and casein-intolerant (no more homemade yogurt for me). :o( But could I try goat's milk yogurt??
I talked with my doctor and am going to increase my Entocort to 9mg again -- he said 6 weeks to reduce it is the bare minimum. How long has it taken for you to reduce your dosage, for those of you on Entocort?
I think I may have an issue with certain fats... ground beef and ground pork in particular. Today was very frustrating and depressing after eating ground beef patties and steamed, peeled carrots and zucchini - major cramping and D. So I did some more research and decided to add in rice and the occasional potato because I need to gain weight. I had 1/2 cup cooked brown rice at dinner tonight (along with chicken thighs and sauteed asparagus w/ olive oil) and have felt fine so far *fingers crossed*. I'm planning to limit my meats to fish, and lean meats like chicken and turkey and lean pork chops, instead of fatty ground beef and pork. Does this sound about right??
Harma, I'm definitely staying away from corn! I bought Mark Sisson's "Paleo Blueprint" book and like the idea of it. It does allow some rice (preferably wild) and the occasional (preferably sweet) potato. I will pretty much be sticking to the "baby food" version of his Paleo diet, I think. I don't want to start adding in the gluten free pre-packaged goods because I felt pretty bloated when I tried them before.
I also bought some Pepto Bismol chewable tablets, ala Dr. Fine's experiment, and was thinking of adding those in (8 per day) for 8 weeks. Has anyone done this in combination with Entocort? Or just to get out of a flare?
Pat, unfortunately I don't remember if there was any other name on the lab form I saw other than "H+ Breath Test." It appeared to be different than an H Pylori test, though.
Joe, I wish you luck in your healing journey too! When do you plan to wean off Entocort? Has it helped you?
Thanks again everyone.
Gowest
LC 3/10
Entocort 9mg/day
1/2 Imodium/day
SCD five weeks -- but going to modified Paleo/GF
To answer your questions:
It's possible that you might be able to tolerate goat's milk, but the amino acid chains in the casein in goat's milk contain peptides that are very similar to the peptides in cow's milk that we react to, so the odds are better than even that you will also react to it. It might be worth a try, though.
Most people here who use Entocort EC successfully, use it for approximately 6 months to a year, before tapering the dose. It takes a year or two for the gut to heal from gluten damage, (most GI docs don't have the foggiest idea that it takes that long).
Yes, it's probably a good idea to reduce fat intake somewhat, until your flare stops, because we are unable to digest fat, when the gut is inflamed.
While it's not medically dangerous to take bismuth subsalicylate together with Entocort EC, (unless you happen to be allergic to it), it's very likely that the Pepto may prevent the budesonide in the Entocort from being properly absorbed, thus effectively stopping it from benefiting you. Pepto-Bismol tends to coat the mucosa of the intestines with a "barrier film". This film helps to prevent pathogens and irritants in the fecal stream from inflaming the mucosa of the intestines, but it will also tend to prevent the absorption of other medications, thus reducing their effectiveness.
Most of us find that we can digest white rice much more easily than brown rice, for this reason: The only difference between white rice and brown rice, is the fact that white rice is made by removing the hull from brown rice. Since most of the fiber in rice is in the hull, removing that hull makes the product much easier to digest, for someone with an inflammatory bowel disease. Of course, most of the nutrients in rice are also in the hull, but that is compensated for, by an "enriching" process, which white rice goes through, after the hull is removed. Wild rice, of course, still contains the hull, similar to brown rice.
Tex
It's possible that you might be able to tolerate goat's milk, but the amino acid chains in the casein in goat's milk contain peptides that are very similar to the peptides in cow's milk that we react to, so the odds are better than even that you will also react to it. It might be worth a try, though.
Most people here who use Entocort EC successfully, use it for approximately 6 months to a year, before tapering the dose. It takes a year or two for the gut to heal from gluten damage, (most GI docs don't have the foggiest idea that it takes that long).
Yes, it's probably a good idea to reduce fat intake somewhat, until your flare stops, because we are unable to digest fat, when the gut is inflamed.
While it's not medically dangerous to take bismuth subsalicylate together with Entocort EC, (unless you happen to be allergic to it), it's very likely that the Pepto may prevent the budesonide in the Entocort from being properly absorbed, thus effectively stopping it from benefiting you. Pepto-Bismol tends to coat the mucosa of the intestines with a "barrier film". This film helps to prevent pathogens and irritants in the fecal stream from inflaming the mucosa of the intestines, but it will also tend to prevent the absorption of other medications, thus reducing their effectiveness.
Most of us find that we can digest white rice much more easily than brown rice, for this reason: The only difference between white rice and brown rice, is the fact that white rice is made by removing the hull from brown rice. Since most of the fiber in rice is in the hull, removing that hull makes the product much easier to digest, for someone with an inflammatory bowel disease. Of course, most of the nutrients in rice are also in the hull, but that is compensated for, by an "enriching" process, which white rice goes through, after the hull is removed. Wild rice, of course, still contains the hull, similar to brown rice.
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 Tex,
Thanks so much for the quick response. I think I will hold off on the Pepto and see if the return to 9mg a day of Entocort will help. I'll also just plan to take more Imodium to get out of this flare and stop the D. I realize now that starting to taper Entocort at 6 weeks was very wishful thinking (although I was following doctor's orders...)
That's good to know about the rice. I had steamed chicken breast meat and white rice for lunch today and feel okay so far. I also took 2 Imodium and 9mg of Entocort this morning. Hopefully this new way of thinking (lean meats and fish, cooked veggies, white rice) will work better for me than a fatty SCD diet... I feel better knowing that this forum is dedicated to what I actually have (LC, not UC or Crohn's)! Here's to hope!!
Gowest
LC 3/10
Gluten and casein intolerant
Entocort 9mg/day
1/2 Imodium/day
Baby Primal/GF/DF/SF
Thanks so much for the quick response. I think I will hold off on the Pepto and see if the return to 9mg a day of Entocort will help. I'll also just plan to take more Imodium to get out of this flare and stop the D. I realize now that starting to taper Entocort at 6 weeks was very wishful thinking (although I was following doctor's orders...)
That's good to know about the rice. I had steamed chicken breast meat and white rice for lunch today and feel okay so far. I also took 2 Imodium and 9mg of Entocort this morning. Hopefully this new way of thinking (lean meats and fish, cooked veggies, white rice) will work better for me than a fatty SCD diet... I feel better knowing that this forum is dedicated to what I actually have (LC, not UC or Crohn's)! Here's to hope!!
Gowest
LC 3/10
Gluten and casein intolerant
Entocort 9mg/day
1/2 Imodium/day
Baby Primal/GF/DF/SF