Visit the Microscopic Colitis Foundation Website
Hi Everyone,
I've arrived backwards.
I've just been diagnosed with collagenous colitis. I've thought I had CD and been gluten free for more than 3 years. I was fine with self-diagnosis/ Enterolab except for periods of intractable diarrhea which I couldn't fix by being gluten-free. I did fix them with the Specific Carbohydrate Diet but couldn't suspend disbelief forever, and relapsed twice with a more normal GF diet.
My GI thinks this type of colitis is not gluten related. I'm a physician myself and struggle being outside of conventional medicine, but I really believe there's more to gluten and other food intolerances than is understood. I've been offered anti-diarrheal drugs, but really my diarrhea is less of a problem to me than the fatigue, achiness and general malaise, and I don't think Lomotil will fix those things. I'm so lucky compared to some of you, but I really want to get back to a feeling of good health, and this diagnosis is going to be the impetus to do whatever it takes to do that.
I feel a certain sense of freedom. I felt little constrained by my self-diagnosed CD to be just gluten-free. Now I feel I can say no one knows Jack sh&t about this, so this is what I'm doing.
My plan is lots of fish oil, probiotics and SCD.
Thank you for all the information and encouragement here.
Best wishes,
Binky
Hello from new person
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Joan,
Thanks for the welcome.
I should say I'm here as a person who is experiencing the joys of this condition. I know nothing professionally. This is completely not my specialty. I only mentioned medical training in the way of saying it really hasn't been much help. I'm in the same boat.
I'm looking forward to having some people who know how to paddle!
Best wishes,
Binky
Thanks for the welcome.
I should say I'm here as a person who is experiencing the joys of this condition. I know nothing professionally. This is completely not my specialty. I only mentioned medical training in the way of saying it really hasn't been much help. I'm in the same boat.
I'm looking forward to having some people who know how to paddle!
Best wishes,
Binky
Hi new person Binky!!! Glad you found us, at least you'll find others who are finding their own personal way with colitis. I hope you find some time to read our forum, there are tons of great recipes, suggestions and diet ideas here.
Although we all (most of us) have MC, we each have chosen to treat the symptoms and reactions in our own way - whatever seems to work for each of us.
Welcome to our on-line family; pull up a chair and make yourself at home!
Mars
Although we all (most of us) have MC, we each have chosen to treat the symptoms and reactions in our own way - whatever seems to work for each of us.
Welcome to our on-line family; pull up a chair and make yourself at home!
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Hi Binky,
Welcome to our on-line family. We consider ourselves a family, because no one truly understands MC unless they actually have it, so we learn from each other, and we care about each other. Apparently, MC is still off the radar, in med school, because very, very few GI docs are up to speed on it, and as you experienced yourself, most insist that diet has no effect on the symptoms, and/or treatment.
Quite a few of us successfully control our symptoms by diet alone, while some use a maintenance treatment of meds, (usually budesonide), and some of the tougher cases use a combination of diet and meds, at least until their gut is able to heal sufficiently that their fine-tuned diet can take over. We've found that about half those who are gluten sensitive are also sensitive to soy. Since you apparently use Enterolab's services, that means that you know more about treating MC than probably 95% of the GI docs out there, and I assume that means that you have checked out soy, eggs, etc.
In case you are unaware of this, fiber is contraindicated for MC, (in contrast with IBS), so minimizing fiber in the diet is usually necessary, at least until the gut has had sufficient time to heal. Certain vegetables, (and some fruit - especially raw fruit), such as lettuce, for example, will almost guarantee a reaction for many of us, while our gut is still ultra-sensitive due to the inflammation. All fruit and vegetables should be well cooked, while the gut is so sensitive. Also, most of the sugar substitutes can cause reactions for many/most of us. In fact, some of us have to eliminate virtually all sugar from the diet, in order to stop the reactions, probably due to the leaky gut syndrome. After we heal, we are usually able to reintroduce fruits and vegetables, and various other items back into our diet. I apologize for wasting your time, if you are already aware of all this.
Did you by any chance order the gene test from Enterolab? Sometimes those results hold interesting clues. For example, we've found that those with double DQ1 genes have the most intolerances, and have the toughest time achieving remission.
If you are still experiencing fatigue, achiness, and general malaise, then obviously, you are still actively reacting, (since those are symptoms of the leaky gut syndrome), and we need to try to figure out the remaining parts to the puzzle, so that you can get your life back. Please feel free to ask anything, and we'll do our best to try to help.
Again, welcome aboard,
Tex
Welcome to our on-line family. We consider ourselves a family, because no one truly understands MC unless they actually have it, so we learn from each other, and we care about each other. Apparently, MC is still off the radar, in med school, because very, very few GI docs are up to speed on it, and as you experienced yourself, most insist that diet has no effect on the symptoms, and/or treatment.
Quite a few of us successfully control our symptoms by diet alone, while some use a maintenance treatment of meds, (usually budesonide), and some of the tougher cases use a combination of diet and meds, at least until their gut is able to heal sufficiently that their fine-tuned diet can take over. We've found that about half those who are gluten sensitive are also sensitive to soy. Since you apparently use Enterolab's services, that means that you know more about treating MC than probably 95% of the GI docs out there, and I assume that means that you have checked out soy, eggs, etc.
In case you are unaware of this, fiber is contraindicated for MC, (in contrast with IBS), so minimizing fiber in the diet is usually necessary, at least until the gut has had sufficient time to heal. Certain vegetables, (and some fruit - especially raw fruit), such as lettuce, for example, will almost guarantee a reaction for many of us, while our gut is still ultra-sensitive due to the inflammation. All fruit and vegetables should be well cooked, while the gut is so sensitive. Also, most of the sugar substitutes can cause reactions for many/most of us. In fact, some of us have to eliminate virtually all sugar from the diet, in order to stop the reactions, probably due to the leaky gut syndrome. After we heal, we are usually able to reintroduce fruits and vegetables, and various other items back into our diet. I apologize for wasting your time, if you are already aware of all this.
Did you by any chance order the gene test from Enterolab? Sometimes those results hold interesting clues. For example, we've found that those with double DQ1 genes have the most intolerances, and have the toughest time achieving remission.
If you are still experiencing fatigue, achiness, and general malaise, then obviously, you are still actively reacting, (since those are symptoms of the leaky gut syndrome), and we need to try to figure out the remaining parts to the puzzle, so that you can get your life back. Please feel free to ask anything, and we'll do our best to try to help.
Again, welcome aboard,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Hi Everyone,
Thank you so much for all the welcomes. It is wonderful to find people who understand this.
Tex, I'd noticed the lettuce problem. You are not in any way wasting my time! Thank you so much for the help.
The SCD is perfect for this condition I think, except perhaps that it allows some dairy, as homemade yoghurt and some cheese. Everything gets introduced gradually and thoroughly cooked, so it works as an elimination diet as much as anything. It definitely worked for me before. I actually had formed stools for several months! It's tough though, so I needed this push to get back to it.
I first did Enterolab testing about 3 years ago, after being GF for several months. My genes are DQ2 and 7. I had positive results to gliadin, casein and anti-tTG, with numbers around 50 or a bit less. I had "moderate malabsorbtion" at about 600. I repeated the malabsorbtion test about 18 months ago, and it was down to about 50. I was also positive for soy and yeast, with eggs at 10 exactly. I've eliminated everything tested except eggs, at various times, although I've never been really strict about anything except gluten. I'm really wondering if I need to eliminate casein completely. That's a bit of a sticking point. I fudged by switching to goat milk for my yoghurt and cheese.
When my GI doctor mentioned microscopic colitis I remembered reading about it on the Enterolab site. When I found this board and started reading your stories I had lots of "uh-ooh, that's me" thoughts. I think many, many people who know they are gluten intolerant would probably turn out to have this if they were biopsied though. The stories are so chillingly familiar.
I'm looking forward to getting better. I know it's doable. I just needed some belief and I think I found it here.
Thank you all again,
Binky
Thank you so much for all the welcomes. It is wonderful to find people who understand this.
Tex, I'd noticed the lettuce problem. You are not in any way wasting my time! Thank you so much for the help.
The SCD is perfect for this condition I think, except perhaps that it allows some dairy, as homemade yoghurt and some cheese. Everything gets introduced gradually and thoroughly cooked, so it works as an elimination diet as much as anything. It definitely worked for me before. I actually had formed stools for several months! It's tough though, so I needed this push to get back to it.
I first did Enterolab testing about 3 years ago, after being GF for several months. My genes are DQ2 and 7. I had positive results to gliadin, casein and anti-tTG, with numbers around 50 or a bit less. I had "moderate malabsorbtion" at about 600. I repeated the malabsorbtion test about 18 months ago, and it was down to about 50. I was also positive for soy and yeast, with eggs at 10 exactly. I've eliminated everything tested except eggs, at various times, although I've never been really strict about anything except gluten. I'm really wondering if I need to eliminate casein completely. That's a bit of a sticking point. I fudged by switching to goat milk for my yoghurt and cheese.
When my GI doctor mentioned microscopic colitis I remembered reading about it on the Enterolab site. When I found this board and started reading your stories I had lots of "uh-ooh, that's me" thoughts. I think many, many people who know they are gluten intolerant would probably turn out to have this if they were biopsied though. The stories are so chillingly familiar.
I'm looking forward to getting better. I know it's doable. I just needed some belief and I think I found it here.
Thank you all again,
Binky
FWIW, I followed the same pattern, for about a year and a half on the GF diet, (that was long before I ever met the folks on this board), and even though I knew that dairy and corn were a problem for me, every few weeks, I would "test" myself, to see if I had healed enough to be able to tolerate them. Naturally, my gut never had a chance to heal, that way. I finally bit the bullet, and cut all that stuff out, once and for all, and sure enough, I was soon in remission, and after a few years of healing, I was able to add pretty much everything but gluten, back into my diet.
A year and a half ago, I did a thorough test with pure oats, and discovered that I'm intolerant of avenin, so I scratched oats off my list, (contrary to what the "experts" say about pure oats being safe for individuals with gluten sensitive enteropathy). Actually, I can tolerate casein now, (as far as my gut is concerned), but it seems to aggravate my arthritis symptoms a bit, so I mostly avoid it, also, though I don't go out of my way to avoid tiny amounts. I never ordered a test for casein antibodies at Enterolab, because when I had the tests done, I had been on the diet, (including dairy-free), for about three years. Unfortunately, I wasn't aware of the lab, back when I was initially searching for solutions.
Goat milk seems to work for some people, but not for others. We're all different in the ways that we respond to various "suspect" foods.
If I recall correctly, theoretically, at least, a test result of 10 for eggs is a positive result, isn't it? The final verdict, though, is always best rendered by your own body's reactions, since no one knows your body better than you.
I agree with you. I believe that as GI docs begin to take biopsy samples during more endoscopy exams, they will discover that this disease is not actually rare after all. My experience was very similar to yours. When I first discovered, (on an earlier board), the wonderful people who eventually became the founding members of this board, my first thought was, "Wow! These people are just like me." LOL. It was a true epiphany for me, because prior to that, I had never known anyone with the same issues, whether in real life, or on the internet.
Yes, it's definitely doable, and you will get your life back. One day, (hopefully soon), you'll suddenly realize that all the fatigue, aches and pains, and the brain fog, are all gone, and you'll feel better than you have in many years.
Of course, we selfishly hope that you'll keep us updated on your progress, because we learn from each other, so feedback is very important. Those updates are the best "research reports" that we have available to us.
You're most welcome,
Tex
A year and a half ago, I did a thorough test with pure oats, and discovered that I'm intolerant of avenin, so I scratched oats off my list, (contrary to what the "experts" say about pure oats being safe for individuals with gluten sensitive enteropathy). Actually, I can tolerate casein now, (as far as my gut is concerned), but it seems to aggravate my arthritis symptoms a bit, so I mostly avoid it, also, though I don't go out of my way to avoid tiny amounts. I never ordered a test for casein antibodies at Enterolab, because when I had the tests done, I had been on the diet, (including dairy-free), for about three years. Unfortunately, I wasn't aware of the lab, back when I was initially searching for solutions.
Goat milk seems to work for some people, but not for others. We're all different in the ways that we respond to various "suspect" foods.
If I recall correctly, theoretically, at least, a test result of 10 for eggs is a positive result, isn't it? The final verdict, though, is always best rendered by your own body's reactions, since no one knows your body better than you.
I agree with you. I believe that as GI docs begin to take biopsy samples during more endoscopy exams, they will discover that this disease is not actually rare after all. My experience was very similar to yours. When I first discovered, (on an earlier board), the wonderful people who eventually became the founding members of this board, my first thought was, "Wow! These people are just like me." LOL. It was a true epiphany for me, because prior to that, I had never known anyone with the same issues, whether in real life, or on the internet.
Yes, it's definitely doable, and you will get your life back. One day, (hopefully soon), you'll suddenly realize that all the fatigue, aches and pains, and the brain fog, are all gone, and you'll feel better than you have in many years.
Of course, we selfishly hope that you'll keep us updated on your progress, because we learn from each other, so feedback is very important. Those updates are the best "research reports" that we have available to us.
You're most welcome,
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 Binky, Welcome to the Potty People Club.
I have found more info on this board than I have found in three physicians (no offense. lol)
Sometimes I find that the muscle aches are worse than the D itself. I stoped taking Lomotil due to the side effects were making me even more exhausted than I already was. I always have a pretty intense lower backache which makes me feel like I'm an 80 year-old.
I'm also annoyed with the fact that I cannot sleep in on the weekends since I wake up with severe cramps and have to go to the bathroom 6 times so by then I'm fully awake. Sheesh!
It's nice to hear other people's symptoms so you at least feel comforted that you're not alone!
Anyways, I'm happy that you found the forum. These people have been living with this way longer than I, and have been very supportive and helpful.
I have found more info on this board than I have found in three physicians (no offense. lol)
Sometimes I find that the muscle aches are worse than the D itself. I stoped taking Lomotil due to the side effects were making me even more exhausted than I already was. I always have a pretty intense lower backache which makes me feel like I'm an 80 year-old.
I'm also annoyed with the fact that I cannot sleep in on the weekends since I wake up with severe cramps and have to go to the bathroom 6 times so by then I'm fully awake. Sheesh!
It's nice to hear other people's symptoms so you at least feel comforted that you're not alone!
Anyways, I'm happy that you found the forum. These people have been living with this way longer than I, and have been very supportive and helpful.
Hi Binky.. would just like to say...
I think thats very good we have a physician on board..(not personal you understand) most gi docs dont give a jot really!!
Binky you will find an amazing wealth of information here from real life sufferers (as yourself) and probably be amazed that most docs dont even know half of this information. Everyone here is a tower of strength and i have to say "Tex is an enstein on most subjects.. I thought he was proffesor lol!!!
good luck and i look forward to reading your posts
tc
I think thats very good we have a physician on board..(not personal you understand) most gi docs dont give a jot really!!
Binky you will find an amazing wealth of information here from real life sufferers (as yourself) and probably be amazed that most docs dont even know half of this information. Everyone here is a tower of strength and i have to say "Tex is an enstein on most subjects.. I thought he was proffesor lol!!!
good luck and i look forward to reading your posts
tc
Angy ;)
Hi Binky!
And
from someone who is a kindred soul! I am also a physician with MC (lymphocytic) and I can relate to everything you expressed.
I was diagnosed 8 years ago. My GI doc put me on a course of asacol, which did nothing for me. She next suggested prednisone, which I politely declined and then rushed home to search the internet. I found this site, learned about the food intolerance connection, and the rest is history. BTW, my GI doc is Hopkins trained and knew nothing about the food issues until I told her. Fortunately she is open to new ideas and has even recommended them to some of her colitis patients.
I am one with the "double DQ1 genes" so I have multiple intolerances. Nothing was known about this 8 years ago, so I started by eliminating gluten - and also followed the SCD for a while. Over time it became apparent that I needed to eliminate other foods. I have a full casein intolerance, so the SCD did not work for me. BTW, casein is the second most common intolerance after gluten around here. Regarding the aches/pains and fatigue - those take the longest to go away. For me it took 9 months to see consistently normal BMs but several years to regain full energy and to be pain-free. It was a gradual thing - I'd look back over the previous 6 mos. and realize how much better I was feeling.
Here's a story I'm embarrassed to tell you, but I know you'll understand given your attempts to self-diagnose/treat. I really believe that I myself precipitated my MC. Just prior to the onset of intractible diarrhea 8 years ago, I had treated myself with 6 weeks of doxycycline for a deer tick bite. Later tests for Lyme disease were negative.
Since we know that antibioics can upset the good/bad bacterial balance in the gut, I am convinced that I started this whole process.
Don't worry about seeking answers outside of conventional medicine. Other then Dr. Fine, there is a dearth of info. and a wealth of misinfo. in the medical world. The very best info is right here on this board, which over the years, I am convinced, has helped more people attain remission than all of the GI docs out there put together. I am dead serious about this.
Once again, it's a pleasure to have you wish us. Looking forward to further chats.
Please feel free to PM (email) me if you wish to discuss anything confidentially with another doc with MC.
Polly
And
from someone who is a kindred soul! I am also a physician with MC (lymphocytic) and I can relate to everything you expressed. I was diagnosed 8 years ago. My GI doc put me on a course of asacol, which did nothing for me. She next suggested prednisone, which I politely declined and then rushed home to search the internet. I found this site, learned about the food intolerance connection, and the rest is history. BTW, my GI doc is Hopkins trained and knew nothing about the food issues until I told her. Fortunately she is open to new ideas and has even recommended them to some of her colitis patients.
I am one with the "double DQ1 genes" so I have multiple intolerances. Nothing was known about this 8 years ago, so I started by eliminating gluten - and also followed the SCD for a while. Over time it became apparent that I needed to eliminate other foods. I have a full casein intolerance, so the SCD did not work for me. BTW, casein is the second most common intolerance after gluten around here. Regarding the aches/pains and fatigue - those take the longest to go away. For me it took 9 months to see consistently normal BMs but several years to regain full energy and to be pain-free. It was a gradual thing - I'd look back over the previous 6 mos. and realize how much better I was feeling.
Here's a story I'm embarrassed to tell you, but I know you'll understand given your attempts to self-diagnose/treat. I really believe that I myself precipitated my MC. Just prior to the onset of intractible diarrhea 8 years ago, I had treated myself with 6 weeks of doxycycline for a deer tick bite. Later tests for Lyme disease were negative.
Since we know that antibioics can upset the good/bad bacterial balance in the gut, I am convinced that I started this whole process.Don't worry about seeking answers outside of conventional medicine. Other then Dr. Fine, there is a dearth of info. and a wealth of misinfo. in the medical world. The very best info is right here on this board, which over the years, I am convinced, has helped more people attain remission than all of the GI docs out there put together. I am dead serious about this.
Once again, it's a pleasure to have you wish us. Looking forward to further chats.
Please feel free to PM (email) me if you wish to discuss anything confidentially with another doc with MC.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Carol Arnett
- Gentoo Penguin
- Posts: 423
- Joined: Fri Mar 17, 2006 12:07 pm
welcome, Binky
Welcome, Binky,
I am so happy for you that you found this site. I think everyone else has said more than I could say in a month of writing but I can say this; you will not be sorry that you joined this special club. People in general are helpful, empathetic and more caring than you will ever find in the convential medical community.
Welcome aboard and I hope remission comes soon for you. Carol
I am so happy for you that you found this site. I think everyone else has said more than I could say in a month of writing but I can say this; you will not be sorry that you joined this special club. People in general are helpful, empathetic and more caring than you will ever find in the convential medical community.
Welcome aboard and I hope remission comes soon for you. Carol
Carol Arnett
Welcome Binky and Babsey 
!
Like everyone else, I've found the information on this site to be very helpful. If you've had the Enterolab testing, I'd recommend that you eliminate all of your known intolerant foods at the same time. If you continue to have reactions, then you likely have additional intolerances. Keeping a food journal along with your reactions will help you determine which foods cause you problems.
I am still determining all of my intolerances after 15 months of being gluten, soy, casien, and egg-free. I, like Polly, am a "double DQ1" and have more intolerances than usual. Thanks to Entocort, I have been able to live a normal life for most of those 15 months. My trips to the bathroom have been less urgent and less frequent. As Tex mentioned, the Entocort (or whatever meds you use) should give you some relief from your symptoms while you determine which foods are irritating your colon. It can be a speedy process or a lengthy one, depending on your situation. With the help and experience of the members on this board, you should find improvement.
!Like everyone else, I've found the information on this site to be very helpful. If you've had the Enterolab testing, I'd recommend that you eliminate all of your known intolerant foods at the same time. If you continue to have reactions, then you likely have additional intolerances. Keeping a food journal along with your reactions will help you determine which foods cause you problems.
I am still determining all of my intolerances after 15 months of being gluten, soy, casien, and egg-free. I, like Polly, am a "double DQ1" and have more intolerances than usual. Thanks to Entocort, I have been able to live a normal life for most of those 15 months. My trips to the bathroom have been less urgent and less frequent. As Tex mentioned, the Entocort (or whatever meds you use) should give you some relief from your symptoms while you determine which foods are irritating your colon. It can be a speedy process or a lengthy one, depending on your situation. With the help and experience of the members on this board, you should find improvement.
You never know what you can do until you have to do it.
Here's my take on that comment: In a sense, your GI is partially correct, in that for many of us, gluten sensitivity does not initially trigger the disease - there can be many causes, as I'm sure you are aware. However, once MC develops, for many/most of us, a gene will be simultaneously triggered to create a state of gluten sensitivity from that point on. On the other hand, for some of us, (especially celiacs), gluten apparently is indeed the genesis of our MC. As Dr. Fine points out:Binky wrote:My GI thinks this type of colitis is not gluten related. I'm a physician myself and struggle being outside of conventional medicine, but I really believe there's more to gluten and other food intolerances than is understood.
I definitely agree with you - there is much more to gluten and other food intolerances than is generally understood.Furthermore, it appears that colitis can cause the immune system to begin recognizing gluten as immunostimulatory and vice versa, gluten sensitivity can lead to colitis.
We seem to be seeing more and more celiacs diagnosed with MC, and most likely, a heck of a lot more would be diagnosed with the disease if they were properly "biopsied" during the initial diagnostic testing. Apparently, most celiacs who are not able to achieve remission on the GF diet, continue to suffer from diarrhea because they have undiagnosed MC, (and therefore, possible additional food intolerances) The celiac boards are full of discussions about other food intolerances, (again, implying the presence of MC), but they never seem to make the connection with MC. Again, quoting Dr. Fine:
These quotes are from this page, on his website:I have shown in a previous study that the most common cause of diarrhea in patients with celiac sprue treated with a gluten-free diet for many years is microscopic colitis.
http://www.finerhealth.com/Educational_ ... c_Colitis/
As an elaboration on that quote, I would also point out that for a celiac, the GF diet should bring prompt relief of symptoms. When those symptoms linger for months after the diet is adopted, something else is obviously involved, and that something else is almost surely MC, in the majority of cases, even if gluten is the only food intolerance.
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.