Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Newbie
Just discovered this board today, and wrote a long post about my background and experience with MC. However, I don't think it actually posted, so am trying to "get through" again. Sorry for the inconvenience this may cause for others .... (I'm totally thrilled to have found this forum - thanks for all the great info)
"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
Hi Kari and 
So glad you found us and have joined the family. I'll look forward to hearing your story and will wait until then to offer advice/suggestions, since I don't know what you have already learned or tried. However, I CAN offer lots of support at this point. Please know that we are here for you, and feel free to ask any questions you have. We know all too well what you are going through. It will get better........we promise!
Love,
Polly
So glad you found us and have joined the family. I'll look forward to hearing your story and will wait until then to offer advice/suggestions, since I don't know what you have already learned or tried. However, I CAN offer lots of support at this point. Please know that we are here for you, and feel free to ask any questions you have. We know all too well what you are going through. It will get better........we promise!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Welcome Kari from one Newbie here to another! I've only been on here 6 days myself and everyone has been such a great help. I hope they are as helpful to you as they have been to me 
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Hi Kari,
Welcome aboard. You might have accidentally clicked on the "Save as Draft" button, instead of the "Submit" button. Try clicking on one of the red links above these posts, that says, either "View your drafts and topics you have posted to", or "View your drafts and posts", to see if that's what happened. If it is, you'll see the title of your post listed under the heading, "Your Drafts", and if you click on it, you can edit it, and/or post it.
We're glad you joined us. Again, welcome aboard.
Tex (Wayne)
Welcome aboard. You might have accidentally clicked on the "Save as Draft" button, instead of the "Submit" button. Try clicking on one of the red links above these posts, that says, either "View your drafts and topics you have posted to", or "View your drafts and posts", to see if that's what happened. If it is, you'll see the title of your post listed under the heading, "Your Drafts", and if you click on it, you can edit it, and/or post it.
We're glad you joined us. Again, welcome aboard.
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.
Well, I just logged on to this forum again and was so pleased to find all these messages of support. I had a bad day yesterday and logged off after I knew I had gotten through to the message board - was too tired to write another synopsis of my story, since the first one was somehow lost (no luck with the draft folder - thx for the suggestion). Will try to post later this evening - I have several questions, and would be happy to share my story ..... Meanwhile, wanted to thank all of you for your kind support.... 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
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kari
g'day from Oz
Sorry that you lost your post (insert homer simpson 'Doh!)
regardless welcome to the family.
there are alot of very wise, wonderful, caring people in this group. it is the one place you can ask a question about anything. accepting MC in your life and embracing the changes that come with it is hard work, thanks to the support and guidence of the people here it was made way way easier.
good luck with your post
g'day from Oz
Sorry that you lost your post (insert homer simpson 'Doh!)
regardless welcome to the family.
there are alot of very wise, wonderful, caring people in this group. it is the one place you can ask a question about anything. accepting MC in your life and embracing the changes that come with it is hard work, thanks to the support and guidence of the people here it was made way way easier.
good luck with your post
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
OK, here we go again .... I've probably had MC for about 10 years, but it was formally diagnosed during a colonoscopy about 6-7 years ago. Initially, I didn't really follow up with any treatment attempts, figured I'd live with it. It finally got bad enough that I had to try something. Not being a fan of pills, I tried acupuncture. It worked for a while, but then my therapist moved out of town, so I stopped the treatments. I tried to eat what I thought was a healthy diet, with frequent small meals and no large ones, with no improvement. Then I tried Pepto Bismol (3 pills, 3 times a day). It helped somewhat, but after 3 months, I gave up and wondered what to try next. Well, I tried an anti inflammatory drug (can't remember the name) prescribed by my doctor. Again with limited success. They actually started making me sicker, so I quit after a couple of weeks. Then, the doctor wanted me to go on steroids, which I flat out refused. The next thing I tried was a Chinese herbalist - yes, you guessed it - limited success. Meanwhile, I constantly experimented with my diet and tried, in vain, to nail down what not to eat.
Well, this summer I got quite desperate to find a solution, so I decided to stop eating - figured nothing in, nothing out :). Well, of course I had to eat something, but my radical attempt at self help ended in a loss of about 11 lbs. (from 143 to 132). However the WD did not abate. Again, I found myself desperate, and decided to do some serious research on the internet. That's when I came across the gluten connection. I immediately went gluten free (July 16th), and noticed a rapid improvement - better than any of my prior attempts. Although my BM's decreased to an average of 3 times a day, I was still having D, but much less WD. Then I discovered the dairy connection, and about a week or so ago went gluten and dairy free. I've noticed slow improvements, with some flareups, which I have generally been able to nail down. Yesterday, I had a HUGE relapse, complete with nausea, cramping, frequent WD's, depression, etc. I'm pretty sure it was from soy sauce that I used on my stir fry. The soy sauce was gluten free, but I've now discovered the soy connection, and feel pretty certain that I'm allergic to soy.
Discovering this support forum yesterday, helped get me through the extreme dissapointment I felt over my major relapse, which lasted through the night. I don't know anyone else with MC, so finding people who can relate certainly feels good.
At this stage, I'm very hopeful that I'll be able to regain some control over my BM's. I'm sure that I will discover other specific foods that bring on an attack. I read somewhere on these boards that as you nail down the major culprits, your system somehow gets more sensitive and will react to various isolated foods that do not fall into the GF, DF and SF categories. Since I'm already feeling better, I hope to be able to deal with what may come constructively. I do not want to delude myself into thinking that there is an easy fix, but am more than willing to do whatever it takes to feel better.
I think this is enough said for now, so here are a few questions:
Yesterday, after I ate the soy, I had an almost instantaneous reaction, but other times, it has seemed like the reaction comes quite a bit later after I eat something disagreeable. Any thoughts?
Pepto Bismol seems to help me through particularly rough spots (i.e. yesterday), so I take them when I feel the need. However, since July 16 when I went gluten free, I've only felt the need 3-4 times. Any thoughts on the use of Pepto Bismol?
I'm a bit impatient with the fact that, although I feel better and have much less frequent BM's, I still do not have anything close to solid stools. Any thoughts on the time frame of healing to the point of something resembling normal?
I think I better end for now, but have to make a closing comment:
"The Potty People" is a genius description for this forum - hat off to whoever came up with it, and the icon that goes along with it is absolutely hillarious!!! I've sat like that for a huge chunk of my life over the past 10 years - sometimes for half an hour at the time!!!
Best wishes to all of you ............
Well, this summer I got quite desperate to find a solution, so I decided to stop eating - figured nothing in, nothing out :). Well, of course I had to eat something, but my radical attempt at self help ended in a loss of about 11 lbs. (from 143 to 132). However the WD did not abate. Again, I found myself desperate, and decided to do some serious research on the internet. That's when I came across the gluten connection. I immediately went gluten free (July 16th), and noticed a rapid improvement - better than any of my prior attempts. Although my BM's decreased to an average of 3 times a day, I was still having D, but much less WD. Then I discovered the dairy connection, and about a week or so ago went gluten and dairy free. I've noticed slow improvements, with some flareups, which I have generally been able to nail down. Yesterday, I had a HUGE relapse, complete with nausea, cramping, frequent WD's, depression, etc. I'm pretty sure it was from soy sauce that I used on my stir fry. The soy sauce was gluten free, but I've now discovered the soy connection, and feel pretty certain that I'm allergic to soy.
Discovering this support forum yesterday, helped get me through the extreme dissapointment I felt over my major relapse, which lasted through the night. I don't know anyone else with MC, so finding people who can relate certainly feels good.
At this stage, I'm very hopeful that I'll be able to regain some control over my BM's. I'm sure that I will discover other specific foods that bring on an attack. I read somewhere on these boards that as you nail down the major culprits, your system somehow gets more sensitive and will react to various isolated foods that do not fall into the GF, DF and SF categories. Since I'm already feeling better, I hope to be able to deal with what may come constructively. I do not want to delude myself into thinking that there is an easy fix, but am more than willing to do whatever it takes to feel better.
I think this is enough said for now, so here are a few questions:
Yesterday, after I ate the soy, I had an almost instantaneous reaction, but other times, it has seemed like the reaction comes quite a bit later after I eat something disagreeable. Any thoughts?
Pepto Bismol seems to help me through particularly rough spots (i.e. yesterday), so I take them when I feel the need. However, since July 16 when I went gluten free, I've only felt the need 3-4 times. Any thoughts on the use of Pepto Bismol?
I'm a bit impatient with the fact that, although I feel better and have much less frequent BM's, I still do not have anything close to solid stools. Any thoughts on the time frame of healing to the point of something resembling normal?
I think I better end for now, but have to make a closing comment:
"The Potty People" is a genius description for this forum - hat off to whoever came up with it, and the icon that goes along with it is absolutely hillarious!!! I've sat like that for a huge chunk of my life over the past 10 years - sometimes for half an hour at the time!!!
Best wishes to all of you ............
"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
Kari,
You are definitely closing in on remission, because you are certainly on the right track. Those three items, (gluten, dairy, and soy), are by far the most common food sensitivities among the members here. With any luck at all, you may have found all of them, and all that you require now, is some healing time. It takes much longer for the gut to heal from gluten damage, than most people realize, (especially GI docs). A realistic estimate, (for complete healing), is 5 to 8 years, but some people heal sooner, while others take longer. Typically, the longer the damage has been accruing, the longer it takes to heal. Also, children heal much faster than adults. By healing, I'm referring to complete restoration of cellular histology in the mucosa of the intestines. IOW, negative results for MC, upon examination of biopsy samples, under a microscope. Fortunately, remission comes much sooner than actual healing. The diet typically brings total remission of symptoms within 6 months to a year, though some of us require less time, and others take longer. It does sound as though you may be getting close, though, so unless you have other intolerances to discover, I'm guessing that you are probably over half-way there. It's difficult to say, because we are all different.
Of course, depending on your genes, you may possibly have other sensitivities. (Those of us with double DQ genes, tend to have more food sensitivities, and more difficulty healing).
Pepto-Bismol works for some of us, but some of us react adversely to it, so we can't take it. If it doesn't seem to bother you, then it shouldn't hurt to take it.
The "Potty People" Logo was developed years ago by one of the founding members, I assume. I'm not even sure who created the idea, though. Maybe Polly remembers, since she was there when the original group first became organized.
Thanks for the history, and the insight,
Tex
You are definitely closing in on remission, because you are certainly on the right track. Those three items, (gluten, dairy, and soy), are by far the most common food sensitivities among the members here. With any luck at all, you may have found all of them, and all that you require now, is some healing time. It takes much longer for the gut to heal from gluten damage, than most people realize, (especially GI docs). A realistic estimate, (for complete healing), is 5 to 8 years, but some people heal sooner, while others take longer. Typically, the longer the damage has been accruing, the longer it takes to heal. Also, children heal much faster than adults. By healing, I'm referring to complete restoration of cellular histology in the mucosa of the intestines. IOW, negative results for MC, upon examination of biopsy samples, under a microscope. Fortunately, remission comes much sooner than actual healing. The diet typically brings total remission of symptoms within 6 months to a year, though some of us require less time, and others take longer. It does sound as though you may be getting close, though, so unless you have other intolerances to discover, I'm guessing that you are probably over half-way there. It's difficult to say, because we are all different.
Of course, depending on your genes, you may possibly have other sensitivities. (Those of us with double DQ genes, tend to have more food sensitivities, and more difficulty healing).
Different food sensitivities can have different reaction times, depending on the nature of the type of reaction. Some of us seem to have mast cell reactions to certain foods, (probably in addition to autoimmune reactions, though the mast cell reactions do not result in an IgE type response), while for others, the reactions are strictly autoimmune in nature. Obviously, an autoimmune reaction is likely to take longer to develop, than a mast cell reaction. Some of us react to certain foods within about 10 minutes of ingesting it, while others take a day or so, before showing a response. A typical reaction time is 3 to 6 hours, for many of us, for most food sensitivities, but again, we are all different. Most reaction times to soy, seem to be relatively short, on the average.Kari wrote:Yesterday, after I ate the soy, I had an almost instantaneous reaction, but other times, it has seemed like the reaction comes quite a bit later after I eat something disagreeable. Any thoughts?
Pepto-Bismol works for some of us, but some of us react adversely to it, so we can't take it. If it doesn't seem to bother you, then it shouldn't hurt to take it.
The "Potty People" Logo was developed years ago by one of the founding members, I assume. I'm not even sure who created the idea, though. Maybe Polly remembers, since she was there when the original group first became organized.
Thanks for the history, and the insight,
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.
Welcome Kari!
Your story sounds alot like mine, except I was diagnosed just over a year ago. In response to your questions, I often experience an immediate reaction to foods, but much less since going GF/Yeast free and mostly dairy and soy free. I don't think I react to my GF soy sauces. Before getting food sensitivity testing through Enterolab, joining this forum and starting the diet, I could not understand why a disease in my colon could also cause such immediate reactions to food. Now I understand.
I too am yet to have a fully-formed BM since I started the diet, but I feel 80% better. I suppose if I were more strict about casein and soy ingredients in my food, perhaps I would get better results. I'm just happy to be using the potty once or twice a day! Of course, when I get glutened or eat something my body disapproves of, it's back to 6/day for a couple of days and massive bloating. I ate a Nathan's hot dog the other day thinking it was safe, and looked 4 months pregnant within an hour - even my husband noticed! Turns out they had been frozen and were not of the new gluten-free variety. Of course, poisoning myself with hot dogs of any kind are never a good idea...
I've read that it takes most people here 6 months or longer to see improvment on the diet, much less total remission. I've been lucky in my response to going gluten-free, which makes me strongly suspect celiac disease. In fact, I'm seeing a Celiac specialist tomorrow.
I tried the Pepto Bismol regimen half-heartedly. I couldn't bear to take 8/day so I usually took 3 as you did. I noticed the Pepto made me feel much more bloated. I blamed it on the calcium carbonate base, but maybe it was something else? I was taking the chewables. I highly recommend the tablets instead (there's only so much artificial pink chalk you can eat). But individual results to Pepto on this forum are not great, and apparently Dr. Fine, the creator of the regimen, now recommends dietary changes instead.
Your story sounds alot like mine, except I was diagnosed just over a year ago. In response to your questions, I often experience an immediate reaction to foods, but much less since going GF/Yeast free and mostly dairy and soy free. I don't think I react to my GF soy sauces. Before getting food sensitivity testing through Enterolab, joining this forum and starting the diet, I could not understand why a disease in my colon could also cause such immediate reactions to food. Now I understand.
I too am yet to have a fully-formed BM since I started the diet, but I feel 80% better. I suppose if I were more strict about casein and soy ingredients in my food, perhaps I would get better results. I'm just happy to be using the potty once or twice a day! Of course, when I get glutened or eat something my body disapproves of, it's back to 6/day for a couple of days and massive bloating. I ate a Nathan's hot dog the other day thinking it was safe, and looked 4 months pregnant within an hour - even my husband noticed! Turns out they had been frozen and were not of the new gluten-free variety. Of course, poisoning myself with hot dogs of any kind are never a good idea...
I've read that it takes most people here 6 months or longer to see improvment on the diet, much less total remission. I've been lucky in my response to going gluten-free, which makes me strongly suspect celiac disease. In fact, I'm seeing a Celiac specialist tomorrow.
I tried the Pepto Bismol regimen half-heartedly. I couldn't bear to take 8/day so I usually took 3 as you did. I noticed the Pepto made me feel much more bloated. I blamed it on the calcium carbonate base, but maybe it was something else? I was taking the chewables. I highly recommend the tablets instead (there's only so much artificial pink chalk you can eat). But individual results to Pepto on this forum are not great, and apparently Dr. Fine, the creator of the regimen, now recommends dietary changes instead.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Dear Kari
Thanks for your story - a very interesting read and it tends to fit with many other peoples experience. FYI, I use pepto (9 a day) when in a flare to try and "knock it on the head" quickly. It seems to work moderately well. However, it is not wise to do a course of it for more then two months as it can have side effects that build up over time.
All the best, Ant
Thanks for your story - a very interesting read and it tends to fit with many other peoples experience. FYI, I use pepto (9 a day) when in a flare to try and "knock it on the head" quickly. It seems to work moderately well. However, it is not wise to do a course of it for more then two months as it can have side effects that build up over time.
All the best, Ant
Thanks for all your responses.
I can totally relate to your "4 months pregnant" story Zizzle. For the first time in years, my stomach is actually rather flat - amazing. There are times when I don't even notice that I have a stomach (no orchestra playing in there, etc.:)) - it kind of feels like an empty space. I'm sure only someone with MC can relate to that comment. Anyhow, it is absolutely delightful.
Tex - you're giving me a lot of hope with your thorough comments - thanks. The idea that I can be healed has never occurred to me - remission, yes, but healing??? Does this mean that I might be able to eat a normal diet at some point in time????
Ant - I'm happy to hear that someone else can use Pepto with some measure of success.
I can totally relate to your "4 months pregnant" story Zizzle. For the first time in years, my stomach is actually rather flat - amazing. There are times when I don't even notice that I have a stomach (no orchestra playing in there, etc.:)) - it kind of feels like an empty space. I'm sure only someone with MC can relate to that comment. Anyhow, it is absolutely delightful.
Tex - you're giving me a lot of hope with your thorough comments - thanks. The idea that I can be healed has never occurred to me - remission, yes, but healing??? Does this mean that I might be able to eat a normal diet at some point in time????
Ant - I'm happy to hear that someone else can use Pepto with some measure of success.
Well, it means that you will be able to eat everything except your actual protein intolerances, (gluten, dairy, soy, etc.). Fiber and sugars should eventually no longer cause any problems, and even trace amounts of the foods that you are sensitive to, shouldn't cause a serious reaction. Instead, after you heal, small amounts of gluten, dairy, or soy may cause a very minor reaction, that passes quickly, (unless you continue to eat them, of course, in which case your immune system will begin to produce massive amounts of antibodies again, and the cycle will start over.Kari wrote:Does this mean that I might be able to eat a normal diet at some point in time????
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.