Visit the Microscopic Colitis Foundation Website
I know God must have sent me to this website……..WOW. There is a lot of info here, but I am overwhelmed. Here is my story (short version)…….. the drastic D started a yr ago. First GI diagnosed me with IBS and sent me home with pain medicine (although I didn’t have pain just lots of D) My GP saved my sanity with Lomotil but did not resolve the issue. While on STD, I read a lot of material and started a regiment using a fiber supplement, high carb, low fat, no dairy diet (good white breads, pasta, rice, chicken, fish, avocados, squash etc.) It worked for about 8 weeks than it started again. Had to lay people off at work and full blown D returned. The second GI diagnosed me with CC. I was relieved to know what I had. Started a regimen of 20 prednisone (3 weeks) and I had relief again, but short lived when we went to 10 mg and another major stress issue. Finally he switched me to Entocort about a month ago. I am taking 6mg and it works about 5 days and then I have to use Imodium to get back on track. My GI would like me to go to 3mg in the next month…yikes! Because my daughter (mentally challenged adult) has Candida, I already know how to shop the “edges” of the grocery store and read labels. However, I lost 15 lbs doing that and now have lost another 20 lbs with CC (105#) of which I can not afford (gained 5 back on the prednisone). Oh by the way, I eat more now than I did before I got CC. I dread the mornings and there are many days I wish I could retire! It has taken over my life.
My local health food guru has suggested that I try going DF first since I am A blood type or should I go full blown on the GF and DF? Could gluten still be an issue when the original diet of lots of breads and pasta worked for 8 wks? I have been keeping a chart on what I eat and when I eat, and I can not tell if I am having a reaction to a particular food except for yogurt and possibly some soy products. After a year of this I am really looking for some help! Thanks for be here to help!!
New and looking for help
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome
Ginny,
WELCOME.
I am new too but I want you to know that you will find this website to be a lifeline.
There are many people here who have experience and can help you. Many are gluten and dairy intolerant. Some have had to eliminate soy, corn, yeast and other things. You have already started on the beginnings of the diet, good for you.
Read as much as you can. No other place will give you the information and support that you will find here.
I feel God sent me here too. I have prayed every night for the strength to get through another day.
Hang in there. There will be others more experienced to give you their wisdom.
You are not alone anymore.
Connie
WELCOME.
I am new too but I want you to know that you will find this website to be a lifeline.
There are many people here who have experience and can help you. Many are gluten and dairy intolerant. Some have had to eliminate soy, corn, yeast and other things. You have already started on the beginnings of the diet, good for you.
Read as much as you can. No other place will give you the information and support that you will find here.
I feel God sent me here too. I have prayed every night for the strength to get through another day.
Hang in there. There will be others more experienced to give you their wisdom.
You are not alone anymore.
Connie
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Ginny --- 
to the family~~~~and as Connie said *U are by no means *alone* on this miserable illness road--
In the beginning lactose was a mean machine to my body----but not to drag out my story--first GI was a dumbell--and then 2nd was my savior---I also had to do Pred.--tried asacol-which didnt work--but then the addition of Colazal straightened me out--
I wasnt as sick as many have been---that was my good fortune---but finding this room was the *jackpot*--here I learned many things----
Being we all react differently -its hard to say *yes* to that or *no* to the other----trial and error---as we used to say its like a crap shoot---
I know U opened the right door when U popped in here----so keep posting and watch for many *insights* to your questioning~~~
Barbara
to the family~~~~and as Connie said *U are by no means *alone* on this miserable illness road--In the beginning lactose was a mean machine to my body----but not to drag out my story--first GI was a dumbell--and then 2nd was my savior---I also had to do Pred.--tried asacol-which didnt work--but then the addition of Colazal straightened me out--
I wasnt as sick as many have been---that was my good fortune---but finding this room was the *jackpot*--here I learned many things----
Being we all react differently -its hard to say *yes* to that or *no* to the other----trial and error---as we used to say its like a crap shoot---
I know U opened the right door when U popped in here----so keep posting and watch for many *insights* to your questioning~~~
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
WELCOME, GINNY!!! 
It sounds like you are on the right track. You're maintaining a food diary and have noticed that you are reacting to some foods. You're also taking Entocort, which has been a lifesaver to many of us, myself included.
I think your doctor is trying to reduce your Entocort dosage too soon. Most of us have had to be on the full 9 mg. dosage for 4-6 months before reducing to 6 mg. It took me another 8 months to reduce from 6 mg. to 3 mg. We use Entocort as a tool to help us learn what foods are giving us problems. Entocort helps control our symptoms while we determine the changes we need to make to our diet. Then, with luck, our diet will control MC.
If you are noticing a reaction to soy, you are probably intolerant to it. Most of us are intolerant to gluten and dairy; about half of us are also intolerant to soy. Soy is present in many, many foods as an additive. For example, tuna packed in water is actually packed in a soy-based broth. Almost all chocolate has soy lethicin added to it. You can find a list of products which usually contain soy here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736
Some of us have had testing done by Enterolab (www.enterolab.com), which presently tests for five intolerances: gluten, casien (dairy), soy, eggs, and yeast. Insurance typically doesn't cover the cost of the tests, but if you can afford them, they will help you determine some of your food intolerances much more quickly.
You will get better. Please don't hesitate to ask us any questions. We are here to help you.
Gloria
It sounds like you are on the right track. You're maintaining a food diary and have noticed that you are reacting to some foods. You're also taking Entocort, which has been a lifesaver to many of us, myself included.
I think your doctor is trying to reduce your Entocort dosage too soon. Most of us have had to be on the full 9 mg. dosage for 4-6 months before reducing to 6 mg. It took me another 8 months to reduce from 6 mg. to 3 mg. We use Entocort as a tool to help us learn what foods are giving us problems. Entocort helps control our symptoms while we determine the changes we need to make to our diet. Then, with luck, our diet will control MC.
If you are noticing a reaction to soy, you are probably intolerant to it. Most of us are intolerant to gluten and dairy; about half of us are also intolerant to soy. Soy is present in many, many foods as an additive. For example, tuna packed in water is actually packed in a soy-based broth. Almost all chocolate has soy lethicin added to it. You can find a list of products which usually contain soy here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736
Some of us have had testing done by Enterolab (www.enterolab.com), which presently tests for five intolerances: gluten, casien (dairy), soy, eggs, and yeast. Insurance typically doesn't cover the cost of the tests, but if you can afford them, they will help you determine some of your food intolerances much more quickly.
You will get better. Please don't hesitate to ask us any questions. We are here to help you.
Gloria
You never know what you can do until you have to do it.
Ginny. Keep reading the newbie information for a start. Yes, EnteroLab is very helpful if you can afford it. www.enterolab.com By the way, your doctor will poo poo it (pun intended) but we who have used it know it is quite reliable.DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Dear Ginny,
Welcome to this wonderful internet family. It is a lifeline to so many of us. I agree that Entocort is the best medicine to be on. Unlike prednisone only about 10-15% get into the rest of your system - so less side effects.
After 4 and a half months I am still on 9gm Entocort per day. I know my doctor will want me to cut back soon, but the advice I get here is you need a few weeks with normal MBs ("normans"), before attempting that.
If I were you I would seriously consider getting off all gluten as well as the diary. Since you have MC it is likely to be a problem. In addition to food intolerance, Enterolab can check your genes for celiac susceptibility. There seems to be a lot of connection between celiac disease and MC.
Again on this site you will find so much information and support. It will help you get your life back together, and on the dark days just come here and shout for help - this place is full of wisdom, understanding and love.
All best, Ant
Welcome to this wonderful internet family. It is a lifeline to so many of us. I agree that Entocort is the best medicine to be on. Unlike prednisone only about 10-15% get into the rest of your system - so less side effects.
After 4 and a half months I am still on 9gm Entocort per day. I know my doctor will want me to cut back soon, but the advice I get here is you need a few weeks with normal MBs ("normans"), before attempting that.
If I were you I would seriously consider getting off all gluten as well as the diary. Since you have MC it is likely to be a problem. In addition to food intolerance, Enterolab can check your genes for celiac susceptibility. There seems to be a lot of connection between celiac disease and MC.
Again
on this site you will find so much information and support. It will help you get your life back together, and on the dark days just come here and shout for help - this place is full of wisdom, understanding and love.All best, Ant
Luce,
I'm not sure if she will receive that PM, because new member have to have written at least 5 posts, before they can "see" the "PM", "e-mail", and other contact buttons, on this discussion board. IOW, just because you can see those buttons, does not mean that she can see them, at this point. That's an added feature, to prevent a spammer from joining, just to copy e-mail addresses and other contact information.
It's possible that she might be able to "see" the PM, since you sent it, but I'm not sure what the system will do, in that situation. She might even be able to respond to it, (if she receives it in the first place), but again, I'm not sure what the system will allow in that case. Basically, it prevents her from initiating the sending of a PM in the first place, but I'm not sure if the code prevents anything beyond that. I guess we'll find out if it limits anything beyond hiding the buttons from new registrants.
She definitely would be able to receive an e-mail, if you sent her one, of course.
Anyway, I thought that I should mention this, so that you didn't feel slighted, just in case you don't get a response. I have a hunch that only the buttons are affected, so that she will see your PM, and she will be able to respond to it, FWIW.
Tex
I'm not sure if she will receive that PM, because new member have to have written at least 5 posts, before they can "see" the "PM", "e-mail", and other contact buttons, on this discussion board. IOW, just because you can see those buttons, does not mean that she can see them, at this point. That's an added feature, to prevent a spammer from joining, just to copy e-mail addresses and other contact information.
It's possible that she might be able to "see" the PM, since you sent it, but I'm not sure what the system will do, in that situation. She might even be able to respond to it, (if she receives it in the first place), but again, I'm not sure what the system will allow in that case. Basically, it prevents her from initiating the sending of a PM in the first place, but I'm not sure if the code prevents anything beyond that. I guess we'll find out if it limits anything beyond hiding the buttons from new registrants.
She definitely would be able to receive an e-mail, if you sent her one, of course.
Anyway, I thought that I should mention this, so that you didn't feel slighted, just in case you don't get a response. I have a hunch that only the buttons are affected, so that she will see your PM, and she will be able to respond to it, FWIW.
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 Ginny,
Welcome to our internet family. I'm sorry to hear of your problems, but we've all been where you are, at one time, so hopefully, we can help you to get your life back.
A food diary is a good idea, but be aware that if you are gluten intolerant, (as the vast majority of us are), then the diary won't do you much good, until you have eliminated all sources of gluten from your diet, and your intestines have begun the healing process. Then, the diary will help you to pinpoint your other intolerances. The reason for this is due to the fact that gluten is a very persistent, (and very potent), allergen. IOW, some of the gliadins in gluten, to which we are sensitive, cause the body to produce antibodies for as long as two years after all traces of gluten have been removed from the diet. That means that if you are eating gluten every day, or every few days, or even only once a week or so, you will continue to react to gluten, because the antibody production is very slow to diminish, once a significant amount of damage is done to the intestines. The damage to our intestines has to heal, before the antibody production will be reduced enough to allow a reaction to diminish. Once gluten is out of the way, and sufficient healing occurs, then the food diary will make it fairly easy to determine other intolerances, because antibodies produced in a reaction against them, will have a much shorter "half-life", so to speak. IOW, those antibodies will fade away relatively quickly, and your reaction will stop, so that if you eat something to which you are intolerant, after that, you will begin to react, again, and so the diary will help to pinpoint the problem. As long as you are continuing to react to residual gluten damage, it's pretty difficult to detect any intolerance reactions.
That's why it took a couple of months for all the gluten-based foods to trigger a reaction. What you did was basically the equivalent of what the doctors call a "gluten challenge". It takes a while for gluten to cause enough damage to trigger a reaction, (we each have our own thresholds, and some of us react much sooner than others), and conversely, once a reaction starts, it's like a runaway freight train - it's not going to stop, until it runs out of steam. In the case of an MC reaction, it's not going to stop, until the body runs out of antibodies, and the gut has some time to heal. And all that time, the symptoms will continue.
I hope I haven't just confused the issue with that explaination - if I have, please say so, and I'll try to do a better job of explaining it. The bottom line is that you are very likely intolerant of gluten and casein, (the main protein in all dairy products), and you have about a 50-50 chance of being soy intolerant, based on our accumulated experiences, so cutting gluten and dairy out of your diet is probably a necessary first step.
As Gloria pointed out, your doctor is tapering your Entocort treatment, way too quickly. Most GI docs don't have the foggiest idea how long it takes for the gut to heal, with MC. They think that just because they can't see the damage, with a colonoscope, it doesn't exist. They're wrong, of course, because the intestinal damage from MC is quite significant, but you have to have a microscope to see it - that's why it's called microscopic colitis.
Again, welcome aboard, and as Gloria mentioned, please don't hesitate to ask any questions that come to mind.
Tex (Wayne)
Welcome to our internet family. I'm sorry to hear of your problems, but we've all been where you are, at one time, so hopefully, we can help you to get your life back.
A food diary is a good idea, but be aware that if you are gluten intolerant, (as the vast majority of us are), then the diary won't do you much good, until you have eliminated all sources of gluten from your diet, and your intestines have begun the healing process. Then, the diary will help you to pinpoint your other intolerances. The reason for this is due to the fact that gluten is a very persistent, (and very potent), allergen. IOW, some of the gliadins in gluten, to which we are sensitive, cause the body to produce antibodies for as long as two years after all traces of gluten have been removed from the diet. That means that if you are eating gluten every day, or every few days, or even only once a week or so, you will continue to react to gluten, because the antibody production is very slow to diminish, once a significant amount of damage is done to the intestines. The damage to our intestines has to heal, before the antibody production will be reduced enough to allow a reaction to diminish. Once gluten is out of the way, and sufficient healing occurs, then the food diary will make it fairly easy to determine other intolerances, because antibodies produced in a reaction against them, will have a much shorter "half-life", so to speak. IOW, those antibodies will fade away relatively quickly, and your reaction will stop, so that if you eat something to which you are intolerant, after that, you will begin to react, again, and so the diary will help to pinpoint the problem. As long as you are continuing to react to residual gluten damage, it's pretty difficult to detect any intolerance reactions.
That's why it took a couple of months for all the gluten-based foods to trigger a reaction. What you did was basically the equivalent of what the doctors call a "gluten challenge". It takes a while for gluten to cause enough damage to trigger a reaction, (we each have our own thresholds, and some of us react much sooner than others), and conversely, once a reaction starts, it's like a runaway freight train - it's not going to stop, until it runs out of steam. In the case of an MC reaction, it's not going to stop, until the body runs out of antibodies, and the gut has some time to heal. And all that time, the symptoms will continue.
I hope I haven't just confused the issue with that explaination - if I have, please say so, and I'll try to do a better job of explaining it. The bottom line is that you are very likely intolerant of gluten and casein, (the main protein in all dairy products), and you have about a 50-50 chance of being soy intolerant, based on our accumulated experiences, so cutting gluten and dairy out of your diet is probably a necessary first step.
As Gloria pointed out, your doctor is tapering your Entocort treatment, way too quickly. Most GI docs don't have the foggiest idea how long it takes for the gut to heal, with MC. They think that just because they can't see the damage, with a colonoscope, it doesn't exist. They're wrong, of course, because the intestinal damage from MC is quite significant, but you have to have a microscope to see it - that's why it's called microscopic colitis.
Again, welcome aboard, and as Gloria mentioned, please don't hesitate to ask any questions that come to mind.
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.
Welcome - we've all found this website through our own efforts. I found it 6 months ago and it's helped me get my life back from housebound 20+ bouts a day and bad pain, to relatively normal, going out, and even staying away overnight. That's because the folks here alerted me to gluten and dairy intolerance.
Make sure you read the section : Welcome Message and Information for Newbies
It's got a lot of good stuff that will get you up to speed quickly.
This truly is a family. As well as sound advice, they listen, commiserate, and never turn a hair when a poster goes into the gory details - it's the only place I know where people will talk about bm's and poop! They're also here when things get a bit too much and you just need a rant or a whine.
Welcome to MC-land
Make sure you read the section : Welcome Message and Information for Newbies
It's got a lot of good stuff that will get you up to speed quickly.
This truly is a family. As well as sound advice, they listen, commiserate, and never turn a hair when a poster goes into the gory details - it's the only place I know where people will talk about bm's and poop! They're also here when things get a bit too much and you just need a rant or a whine.
Welcome to MC-land
Maxine
Gluten primer
In addition to the great info on this site, here is a gluten slideshow from Web MD.
http://www.webmd.com/diet/slideshow-gluten-free-diet
http://www.webmd.com/diet/slideshow-gluten-free-diet
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Thank you all for so much support! I'm having a good day and wish I wasn't at work! Anyhow, I will probably use Enterolab; us Virgo's have to know what is wrong.
Tex, thanks for the explanation. I was having difficulty understanding how I could be intolerant to gluten when it seemed to work. Prior to that diet I hardly ever ate breads because of my daughter's candida.
Lucy, I will try the PM when I get out of here.
My doc originally gave me a prescription for 6 months of Entocort @ 9mg a day and than the next appt he gave me one for a yr for only 3 mg. I was looking to cut the cost by mail-in; not looking to cut the dosage! I did try 9mg and I got very ill and had to go to bed. However I discovered, in one Tex's explanations it might have worked if I had taken them throughout the day instead all at once (as I was told).
Mentally I am trying to prepare myself to go GF, DF & SF. As well as stocking my cupboards with the right stuff. The fear of losing more weight scares the "poop" (literally) out of me! I will be back with more questions.
Tex, thanks for the explanation. I was having difficulty understanding how I could be intolerant to gluten when it seemed to work. Prior to that diet I hardly ever ate breads because of my daughter's candida.
Lucy, I will try the PM when I get out of here.
My doc originally gave me a prescription for 6 months of Entocort @ 9mg a day and than the next appt he gave me one for a yr for only 3 mg. I was looking to cut the cost by mail-in; not looking to cut the dosage! I did try 9mg and I got very ill and had to go to bed. However I discovered, in one Tex's explanations it might have worked if I had taken them throughout the day instead all at once (as I was told).
Mentally I am trying to prepare myself to go GF, DF & SF. As well as stocking my cupboards with the right stuff. The fear of losing more weight scares the "poop" (literally) out of me! I will be back with more questions.
Hi again,
A nurse from Blue Cross Blue Shield had found a supplement for me. I ordered it but haven't gotten it yet. I was reluctant to post about it until I had tried it. The supplement is found at IHerb.com. It is called Jarrow Formula, Brown Rice Protein Concentrate. It is Gluten, Sugar, Dairy and Soy free.
My weight loss has been a consistant problem but I couldn't find a supplement that didn't have the no no's. I am sharing it just in case you want to check it out. It is $9.08 for a 1 pound container.
Glad you are having a good day.
I am so glad you found the website.
Connie
A nurse from Blue Cross Blue Shield had found a supplement for me. I ordered it but haven't gotten it yet. I was reluctant to post about it until I had tried it. The supplement is found at IHerb.com. It is called Jarrow Formula, Brown Rice Protein Concentrate. It is Gluten, Sugar, Dairy and Soy free.
My weight loss has been a consistant problem but I couldn't find a supplement that didn't have the no no's. I am sharing it just in case you want to check it out. It is $9.08 for a 1 pound container.
Glad you are having a good day.
I am so glad you found the website.
Connie
Connie, that is great news! I will definitely order it. My cupboard is full of things I have tried and am willing to try anything natural. We are kindred spirits when it comes to weight loss! Most people laugh and want to give me their excess weight and they don't realize how big a problem it is keeping weight on!
Thanks, Ginny
Thanks, Ginny
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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am