It’s been just about 2 years since I was diagnosed with LC and found this board. I have been gluten, dairy and soy free since then after getting the Enterolab tests and am doing just fine. I was able to get control of my symptoms without any medications, just with diet. I check back on the Forum fairly often, even though I don’t post much anymore, and thought that an update might be in order. So here, in no particular order, are some comments and observations.
1. I continue to be so impressed by the level of support and caring on this forum. Tex and Polly are most responsible for setting the respectful, encouraging, and sometimes “tough love” attitude. But so many others add their own particular voices and enrich the discussions. It’s a different group than when I was first on board here, as many have (hopefully) found healing and stability and have drifted away to various degrees. But I remain so grateful for all the help I’ve received!
2. The MRT testing and the role of mast cells and histamine is something that really wasn’t on the radar two years ago. So many here seem to have issues with this, and even though I apparently don’t have problems and can eat most of these foods, an awareness of this issue is important in case I notice any deterioration.
3. So where am I at? Tex and others here have made it clear that healing of the gut takes a long time, and that's certainly been my experience. At the beginning I wasn’t able to tolerate much fiber, and it took over a year before I slowly started adding foods other than well-cooked veggies and fruits. After a year I was able to add some raw fruits and veggies in moderation and now after 2 years I can pretty much eat them freely. For example, just a month ago I tried a Waldorf salad with chopped raw apples with their peel, celery and walnuts, and did fine. I can eat raw tomatoes, but canned tomatoes still cause problems, most likely because of citric acid. A few other foods are problamatic as well. Even though my Enterolab test for eggs was negative, I find that like some on the Forum I can tolerate eggs in cooking, but eggs by themselves are still suspect. And that's eating eggs from my own chickens. So for me, I would say that by 2 years I’m about 95% back to normal.
4. Of course I still religiously avoid gluten, dairy and soy. I haven’t had a genuine flare in two years. When I do get contaminated with something, now I tend to have a day of minor upset with gas and looser BMs, but then that’s it. So I am making good progress.
5. In February I found out that I am hyperthyroid with Graves Disease, an autoimmune disorder. Thyroid disorders are really common with MC, and here I am, another example. This explained why I was having a hard time putting weight back on even though I felt that my LC symptoms were under control. Interestingly, a symptom of being hyperthyroid is diarrhea, but although I had more frequent BM’s, they were always normans. Other symptoms were fatigue and rapid heart rate with minimal exertion, so I kept wondering if I somehow was sensitive to something else. But I couldn’t come up with anything. At any rate, I had the radioiodine treatment to kill off some thyroid cells and now am in the lengthy process of adjusting my thyroid hormone levels. I feel much better, but still have work to do to get stabilized and that will take time.
So in conclusion, I am an example of “getting your life back” and I just wanted to encourage those just starting the journey not to get discouraged if it seems to take longer than you think it should. I now hardly ever think about where bathrooms are located, or worry about going places and doing things…… I can relax and enjoy activities.
Rosie
Update at 2 Years
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Update at 2 Years
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Rosie,
I'd like to express my appreciation for your thoughtfulness, and for the time and effort you spent writing your update post. Though you may not get many responses, I can absolutely guarantee that it will have a huge impact on many, many people, (members and non-members alike), who inevitably wonder if all the hard work involved in treating this disease by diet, is worth the effort. So often, members post for a few months or so, as they fine-tune a treatment plan that works for them, and as they resolve their symptoms, they stop posting, leaving us to wonder if they continued to improve, or if they relapsed and gave up on the diet, or something in between.
I can't visualize a more effective way to do so much good for so many people, who are either wondering if they should try the diet, or wondering whether they should continue it, if they are not yet seeing results. We can recommend the diet until we are blue in the face, but we all recognize that it is not an easy path to follow, and IMO, sharing a success story such as yours is probably worth a thousand recommendations. And the beautiful part is, it not only works well for many people who choose to avoid meds, but it is the key to remission for so many people who are using meds alone, but find that the meds are not adequate to resolve their symptoms, and then there are always the really tough cases that seem to absolutely require both meds and extreme diet changes.
Since much of what we have found to be effective, here, in the way of treatment, is contrary to what so many GI specialists recommend, it's probably not very easy for most newbies to accept some of our claims, on faith alone. Over the years, we've seen a few heartbreaking cases, such as mothers with newly-diagnosed infants, who understandably couldn't bring themselves to break away from the futile recommendations of doctors who didn't know how to properly treat their baby. In such a situation, it's difficult to put your trust in the recommendations of a bunch of strangers on an internet discussion board. I'm sure that most doctors who don't understand MC, don't have many kind words for internet discussion boards that offer treatment ideas that are contrary to their own training, so you know what their advice will be, if the mother asks them about us.
As time goes on, I'm sure that more and more doctors will begin to embrace many of the concepts that we've found to help, but as our own knowledge base continues to expand, we will probably remain at least one or two steps ahead of them, for quite a few more years, since the medical juggernaut often seems to be rather slow to accept new ideas, (unless those ideas involve prescription drugs, of course.
)
Anyway, thank you for such an inspiring post. I'm considering setting up a forum where we can keep success stories, so that they don't get lost in the shuffle. That way, in the future, whenever someone comes to this site, looking for help, and wondering what lies in their future, we can point to posts such as yours.
Tex
I'd like to express my appreciation for your thoughtfulness, and for the time and effort you spent writing your update post. Though you may not get many responses, I can absolutely guarantee that it will have a huge impact on many, many people, (members and non-members alike), who inevitably wonder if all the hard work involved in treating this disease by diet, is worth the effort. So often, members post for a few months or so, as they fine-tune a treatment plan that works for them, and as they resolve their symptoms, they stop posting, leaving us to wonder if they continued to improve, or if they relapsed and gave up on the diet, or something in between.
I can't visualize a more effective way to do so much good for so many people, who are either wondering if they should try the diet, or wondering whether they should continue it, if they are not yet seeing results. We can recommend the diet until we are blue in the face, but we all recognize that it is not an easy path to follow, and IMO, sharing a success story such as yours is probably worth a thousand recommendations. And the beautiful part is, it not only works well for many people who choose to avoid meds, but it is the key to remission for so many people who are using meds alone, but find that the meds are not adequate to resolve their symptoms, and then there are always the really tough cases that seem to absolutely require both meds and extreme diet changes.
Since much of what we have found to be effective, here, in the way of treatment, is contrary to what so many GI specialists recommend, it's probably not very easy for most newbies to accept some of our claims, on faith alone. Over the years, we've seen a few heartbreaking cases, such as mothers with newly-diagnosed infants, who understandably couldn't bring themselves to break away from the futile recommendations of doctors who didn't know how to properly treat their baby. In such a situation, it's difficult to put your trust in the recommendations of a bunch of strangers on an internet discussion board. I'm sure that most doctors who don't understand MC, don't have many kind words for internet discussion boards that offer treatment ideas that are contrary to their own training, so you know what their advice will be, if the mother asks them about us.
As time goes on, I'm sure that more and more doctors will begin to embrace many of the concepts that we've found to help, but as our own knowledge base continues to expand, we will probably remain at least one or two steps ahead of them, for quite a few more years, since the medical juggernaut often seems to be rather slow to accept new ideas, (unless those ideas involve prescription drugs, of course.
)Anyway, thank you for such an inspiring post. I'm considering setting up a forum where we can keep success stories, so that they don't get lost in the shuffle. That way, in the future, whenever someone comes to this site, looking for help, and wondering what lies in their future, we can point to posts such as yours.
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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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
That's an excellent idea, Tex! 
And Rosie--how very encouraging!! Thanks so much for posting this!!
I have a funny egg story. Several families in my church have chickens or ducks, and we get free eggs fairly often. My husband was making an omelet the other day and protesting the fact that the only eggs we had were duck eggs which he said he'd never had before. Well, he has--he just didn't know it.
And they were fine, and he liked them. Then just a few days ago, he was cooking chicken eggs from another friend, who had told me that she thought they had gotten all the "old" eggs out. Since they have a rooster, the eggs are fertilized and older eggs, well... you know. My husband was cracking eggs straight into the pan instead of into a bowl first and you guessed it!
If you are in Portland, maybe in the fall we could go to coffee (so to speak). I also am working on controlling MC only with diet, and have thyroid issues.
And Rosie--how very encouraging!! Thanks so much for posting this!!
I have a funny egg story. Several families in my church have chickens or ducks, and we get free eggs fairly often. My husband was making an omelet the other day and protesting the fact that the only eggs we had were duck eggs which he said he'd never had before. Well, he has--he just didn't know it.
And they were fine, and he liked them. Then just a few days ago, he was cooking chicken eggs from another friend, who had told me that she thought they had gotten all the "old" eggs out. Since they have a rooster, the eggs are fertilized and older eggs, well... you know. My husband was cracking eggs straight into the pan instead of into a bowl first and you guessed it! If you are in Portland, maybe in the fall we could go to coffee (so to speak). I also am working on controlling MC only with diet, and have thyroid issues.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Rosie,
Thank you for your thorough and thoughtful post - I'm so happy for you, and it's so nice to hear good news. I was also hyper thyroid and had the radioiodine treatment a long time ago - it was very effective for me and resolved both my graves and my hyper thyroid issues. A few years after the treatment, I became hypo thyroid, and have been on synthroid since the diagnosis. With some minor tweaking, I have been on a steady dose for many years now. I never think of it as a problem. Good luck with stabilizing.
Tex,
I love your idea of "success stories", and agree that they can be a great source of inspiration to those who are in the midst of the struggle.
Love,
Kari
Thank you for your thorough and thoughtful post - I'm so happy for you, and it's so nice to hear good news. I was also hyper thyroid and had the radioiodine treatment a long time ago - it was very effective for me and resolved both my graves and my hyper thyroid issues. A few years after the treatment, I became hypo thyroid, and have been on synthroid since the diagnosis. With some minor tweaking, I have been on a steady dose for many years now. I never think of it as a problem. Good luck with stabilizing.
Tex,
I love your idea of "success stories", and agree that they can be a great source of inspiration to those who are in the midst of the struggle.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Thanks for the kind words, Tex. And I too think that a dedicated place on the forum to collect success stories would be very helpful. It would showcase not only common themes, but also the variety of ways members have approached their diet/medications.
MC is a very cruel disease, in that the almost universal symptoms of severe fatigue, depression and anxiety make it hard to take the steps needed to control the disease. Some examples of success stories to help provide the motivation and hope required to get started would be very powerful!
Marliss, I live in Eugene, and come up to Portland fairly often to visit my mother and brother's family. So I could certainly find an opportunity to meet up for coffee/tea sometime. It sounds like we have several issues in common.
Rosie
MC is a very cruel disease, in that the almost universal symptoms of severe fatigue, depression and anxiety make it hard to take the steps needed to control the disease. Some examples of success stories to help provide the motivation and hope required to get started would be very powerful!
Marliss, I live in Eugene, and come up to Portland fairly often to visit my mother and brother's family. So I could certainly find an opportunity to meet up for coffee/tea sometime. It sounds like we have several issues in common.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Rosie,
Thank you so very much for the encouraging story you sent. It is great to hear that you are doing 95% well and sorry about the thyroid condition. We all have our own stories about taking life back and yours will be encouraging and supportive to new people joining here that think all is lost. We can recover and for some of us slower than others.
Tex - great idea on success stories forum.
Love, Maggie
Thank you so very much for the encouraging story you sent. It is great to hear that you are doing 95% well and sorry about the thyroid condition. We all have our own stories about taking life back and yours will be encouraging and supportive to new people joining here that think all is lost. We can recover and for some of us slower than others.
Tex - great idea on success stories forum.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Rosie,
This is great news, congratulations on your diligence and success. I just had someone ask me out of the blue when I last had my thyroid checked - it is "on my list." In fact, I am making a list for my PCP; that's something I used to do pre-MC, so she's used to it - but I haven't seen her since this MC explosion in my life, so she has a lot to catch up on ;)
I agree, Tex (and all previous agreers) - I would bet that some visitors would dip into success stories and not much else. I think it would be important to make sure nothing is left out of those stories (that it takes more than a couple of GF weeks; potential for other food intolerances; medication failures as well as successes...) not to make them sound pessimistic, or to overburden the teller, but to responsible in communicating with those just desperate for a success story.
Or maybe it's good to say - "so now I'm strictly GF/DF/SF" as if that's a little easier than most of have find it at first. It sure is easier than relentless D!
Tex, are you proposing that people would continue to post to the Main Message Board, and once in a while you (or the consensus of many, as in this case) would say - "hey, that's a success story!" and then you or another moderator would move it to the new forum? I feel as though I'm still a work in progress (and due for an update), but at some point I hope I'm telling a success story from a little farther down the line myself. (For now, "so far, so good" feels just fine.)
Love,
Sara
This is great news, congratulations on your diligence and success. I just had someone ask me out of the blue when I last had my thyroid checked - it is "on my list." In fact, I am making a list for my PCP; that's something I used to do pre-MC, so she's used to it - but I haven't seen her since this MC explosion in my life, so she has a lot to catch up on ;)
I agree, Tex (and all previous agreers) - I would bet that some visitors would dip into success stories and not much else. I think it would be important to make sure nothing is left out of those stories (that it takes more than a couple of GF weeks; potential for other food intolerances; medication failures as well as successes...) not to make them sound pessimistic, or to overburden the teller, but to responsible in communicating with those just desperate for a success story.
Or maybe it's good to say - "so now I'm strictly GF/DF/SF" as if that's a little easier than most of have find it at first. It sure is easier than relentless D!
Tex, are you proposing that people would continue to post to the Main Message Board, and once in a while you (or the consensus of many, as in this case) would say - "hey, that's a success story!" and then you or another moderator would move it to the new forum? I feel as though I'm still a work in progress (and due for an update), but at some point I hope I'm telling a success story from a little farther down the line myself. (For now, "so far, so good" feels just fine.)
Love,
Sara
Sara,
Either place will work. More existing members will read posts on the Main Message Board, than anywhere else, since it's the most active forum. Threads are easy to move.
Love,
Tex
Either place will work. More existing members will read posts on the Main Message Board, than anywhere else, since it's the most active forum. Threads are easy to move.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Nice to know there is another "Potty Person" in town!
My GI is Andrew Mirhej, with Peace Health. I haven't used him much, but have to give him credit for taking the biopsies during a routine colonoscopy when told I had problems with diarrhea. When his office called with the diagnosis, they didn't provide any sort of explanation of what lymphocytic colitis was. The nurse just told me to fill a prescription for Entocort, start taking it, and make an appointment with Dr. Mirhej in two weeks. This must be his standard MC treatment, as this was done without any sort of office visit. However, at the time I was doing pretty good after elimination fish oil supplements from my diet, based on one of his comments at the colonoscopy. Evidently fish oil was (and still is) a major contributor to my LC, as I've tried several times to add it back without success. Once I had the diagnosis I did some web work and found this forum. I next eliminated gluten, and saw a lot of improvement. Then I got tested with Enterolab and found out that I needed to eliminate soy too. So I never ended up filling the Entocort prescription, and told Dr. Mirhej's office that I didn't see a point in an office visit when I wasn't having problems. I said I would make an appointment if my condition deteriorated again. But that never happened, and so I haven't seen him. My PCP is Kate Beckstrand, and she was fairly dismissive of my telling her that I was controlling my LC with diet....... I'm sure she feels that it was just coincidence that I had a remission when on the gluten free/ dairy free/soy free diet.
Coincidentally, my daughter is 35 years old and also named Sue! She is nursing a 9 month old baby with lots of reflux, and discovered that going dairy free helps. She also discovered that she is sensitive to eggs too, so she must have inherited some of my genes/food issues.
Would you have any interest in meeting up? If so, you can pm me.
Rosie
My GI is Andrew Mirhej, with Peace Health. I haven't used him much, but have to give him credit for taking the biopsies during a routine colonoscopy when told I had problems with diarrhea. When his office called with the diagnosis, they didn't provide any sort of explanation of what lymphocytic colitis was. The nurse just told me to fill a prescription for Entocort, start taking it, and make an appointment with Dr. Mirhej in two weeks. This must be his standard MC treatment, as this was done without any sort of office visit. However, at the time I was doing pretty good after elimination fish oil supplements from my diet, based on one of his comments at the colonoscopy. Evidently fish oil was (and still is) a major contributor to my LC, as I've tried several times to add it back without success. Once I had the diagnosis I did some web work and found this forum. I next eliminated gluten, and saw a lot of improvement. Then I got tested with Enterolab and found out that I needed to eliminate soy too. So I never ended up filling the Entocort prescription, and told Dr. Mirhej's office that I didn't see a point in an office visit when I wasn't having problems. I said I would make an appointment if my condition deteriorated again. But that never happened, and so I haven't seen him. My PCP is Kate Beckstrand, and she was fairly dismissive of my telling her that I was controlling my LC with diet....... I'm sure she feels that it was just coincidence that I had a remission when on the gluten free/ dairy free/soy free diet.
Coincidentally, my daughter is 35 years old and also named Sue! She is nursing a 9 month old baby with lots of reflux, and discovered that going dairy free helps. She also discovered that she is sensitive to eggs too, so she must have inherited some of my genes/food issues.
Would you have any interest in meeting up? If so, you can pm me.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
So glad to find this
I am so happy to find this site. I am a 43 year-old registered nurse who has gone through a gauntlet of tests and "undiagnoses" before LC was found on my most recent colonoscopy in April of 2011. The GI immediately put me on a large dose of Asacol. It worked initially, but then I was so fatigued I could barely get out of bed. I stopped the Asacol and went back to see him. He shrugged and asked why I went back to see him, stating that LC is not life-threatening, so I could not be on meds and be ok. I have other symptoms on and off - mouth sores with certain foods, left hip pain before an episode (at least it tells me somethings coming) and also the thumb pain some others have talked about. He dismissed the other symptoms as something else. Finding this site has helped me feel validated. I worked for many years in medical research and can say definitively that every piece of information counts, unfortunately if it isn't printed in some text or article yet, it may go dismissed. I have definitely noticed a sensitivity to gluten and dairy, tomatoes, fresh fruit (I am starting to wonder what I CAN eat!) I also have an allergy to all seafood. It's trial and error, but it helps to hear what you all have been through and tried. I will keep on reading!
Hi Judy
Welcome to the board. I'm disgusted by your Doc's reaction, but not surprised. Many people have reported receiving similar insensitive comments by their doctors. It sounds like you have made a good start identifying your intolerances. Keeping a food diary is a big help with that. Keep us posted on your progress.
Gabby
Welcome to the board. I'm disgusted by your Doc's reaction, but not surprised. Many people have reported receiving similar insensitive comments by their doctors. It sounds like you have made a good start identifying your intolerances. Keeping a food diary is a big help with that. Keep us posted on your progress.
Gabby
Hi Judy,
Nice to have another medical professional here, you will surely be validated in questioning the treatment you've had so far w/western Med. My daughter is 41 and just entering nursing school after doing years of medical research. She also got my GS genes, as did her kids, and she was the one who hammered me for almost a year to go GF before I did. You will no doubt have people here recommend the Enterolab testing, it helps to know what you're dealing with and no blood test will tell you if you're gluten sensitive.
Welcome to our world, a world of people who question authority and think for themselves and share your pain.
Connie
Nice to have another medical professional here, you will surely be validated in questioning the treatment you've had so far w/western Med. My daughter is 41 and just entering nursing school after doing years of medical research. She also got my GS genes, as did her kids, and she was the one who hammered me for almost a year to go GF before I did. You will no doubt have people here recommend the Enterolab testing, it helps to know what you're dealing with and no blood test will tell you if you're gluten sensitive.
Welcome to our world, a world of people who question authority and think for themselves and share your pain.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Susie & Rosie,
I'm in Portland, if you ever find yourself coming up this way, PM me and I'll take you out for a cupcake here:http://cravebakeshop.com/
Kyra creates some amazing stuff.
Connie
I'm in Portland, if you ever find yourself coming up this way, PM me and I'll take you out for a cupcake here:http://cravebakeshop.com/
Kyra creates some amazing stuff.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.