I visited my GI today with the sole purpose of educating him about how I've achieved remission. I started out by telling him that I felt he was open-minded during my last visit and I hoped that he would be the same way during this visit. We talked a bit about MC and how no one really knows what causes it. I tried not to act like I had all the answers and it seemed to keep his defenses at bay.
I told him that I was able to get off Entocort by maintaining a food diary for 16 months and finally realizing that green beans (and legumes) were my last food intolerance. Then I handed him my Enterolab test results and told him that Dr. Fine was a GI who also had MC. I said that he was the GI who originally recommended Pepto Bismol, but no longer does. I said I wasn't sure what all of the medical language in the results meant, but that he probably would know. I think that made him still feel like he had more knowledge and he was very interested in reading the report. He read the entire report and the cost summary that was attached, offering some explanations as he read and comparing it to some of the typical tests (blood work) that his office orders.
I told him he could keep the test in my file. He was appreciative and said that he would certainly recommend the tests to someone else if they were struggling with MC.
I think he suspects that I am a celiac, even though the blood work showed I'm not, meaning he was a little confused about the test conclusions. He checked to see if he had taken a biopsy of my small intestine (he hadn't). He said that a biopsy of the small intestine was 100% accurate in diagnosing celiac sprue. He said if I have symptoms again, he will take a biopsy from my small intestine to check for celiac sprue.
He said that a diagnosis of IBS is typically given when they don't have any other explanation. Then he mentioned that they are finding that many people who have been diagnosed with IBS actually have celiac sprue, once they take a biopsy of the small intestine. He must already realize that it could be MC, too because he accurately diagnosed me. It sounds like he's still connecting the dots between gluten sensitivity and IBDs.
As we ended the office visit, he said to me that many times he learns more from his patients. Wow!
I asked him why his office sent me two letters asking me to get another colonoscopy. He said it was because they thought I was still having symptoms. That doesn't explain the need, but then he said since I wasn't having any symptoms, I wouldn't need another colonoscopy for 10 years. Yeah!
I left his office feeling like I had accomplished a big part of my goal.
Gloria
My GI Visit Today
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My GI Visit Today
You never know what you can do until you have to do it.
Gloria,
You did great, girl! I don't see how you could have done a better job of educating your doc. I'll bet that you would be very good in the field of technical sales. Beaucoups of kudos to you.
That was definitely a most productive meeting, and you have probably helped uncountable MC patients, since your doctor will undoubtedly spread the word to his associates, also.
Tex
You did great, girl! I don't see how you could have done a better job of educating your doc. I'll bet that you would be very good in the field of technical sales. Beaucoups of kudos to you.
That was definitely a most productive meeting, and you have probably helped uncountable MC patients, since your doctor will undoubtedly spread the word to his associates, also.
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.
Here are some interesting tidbits about my GI. He graduated in 1969 from Makerere University, Kampala, Uganda (he is an African-American). He's in a group practice of 3. Here is his bio from their website:
John W. Matseshe, M.D.
Dr. Matseshe is Kenyan born and attended undergraduate medical school in the British system of education. He took his residency in Internal Medicine at Northwestern University Medical School in Chicago, Illinois. He went on to the Mayo Clinic in Rochester, Minnesota, specializing in Gastroenterology. Prior to joining the staff of the Mayo Clinic as a consultant, Dr. Matseshe was a National Institute of Health Research Fellow. He was also Assistant Professor of Medicine at the Mayo Medical School. Dr. Matseshe is Board Certified in both Internal Medicine and Gastroenterology
He also used to be the head of medicine at the local hospital, so he has a lot of connections.
I guess I can add him to the a list of recommended doctors on this website. I can't credit him with helping me to achieve remission - that credit goes to the members of this board. But he does seem to understand that removing food intolerances, particularly gluten, was the key to remission in my case.
Gloria
John W. Matseshe, M.D.
Dr. Matseshe is Kenyan born and attended undergraduate medical school in the British system of education. He took his residency in Internal Medicine at Northwestern University Medical School in Chicago, Illinois. He went on to the Mayo Clinic in Rochester, Minnesota, specializing in Gastroenterology. Prior to joining the staff of the Mayo Clinic as a consultant, Dr. Matseshe was a National Institute of Health Research Fellow. He was also Assistant Professor of Medicine at the Mayo Medical School. Dr. Matseshe is Board Certified in both Internal Medicine and Gastroenterology
He also used to be the head of medicine at the local hospital, so he has a lot of connections.
I guess I can add him to the a list of recommended doctors on this website. I can't credit him with helping me to achieve remission - that credit goes to the members of this board. But he does seem to understand that removing food intolerances, particularly gluten, was the key to remission in my case.
Gloria
You never know what you can do until you have to do it.
Hi Gloria, my fellow double DQ1!
Three cheers for you!
You GO, girl!
I think most docs have trouble understanding that our type of gluten sensitivity can exist without ANY positive celiac tests. Often the blood test AND the biopsy of the small intestine are negative. So those with IBS who have a negative biopsy of the small intestine (and therefore no celiac finding) will still not be appropiately diagnosed with gluten sensitivity. You might want to show your doc Dr. Fine's article about diagnosing gluten sensitivity BEFORE the villi are gone (the villi of the small intestine are what are biopsied to rule out celiac disease). It can be found on his website.
Is that your full list of intolerances now under your avatar? Does this mean you can tolerate chocolate and corn? I'm wodering if I should give them a try again?
Love,
Polly
Three cheers for you!
You GO, girl!I think most docs have trouble understanding that our type of gluten sensitivity can exist without ANY positive celiac tests. Often the blood test AND the biopsy of the small intestine are negative. So those with IBS who have a negative biopsy of the small intestine (and therefore no celiac finding) will still not be appropiately diagnosed with gluten sensitivity. You might want to show your doc Dr. Fine's article about diagnosing gluten sensitivity BEFORE the villi are gone (the villi of the small intestine are what are biopsied to rule out celiac disease). It can be found on his website.
Is that your full list of intolerances now under your avatar? Does this mean you can tolerate chocolate and corn? I'm wodering if I should give them a try again?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
The Enterolab test results had the Enterolab URL on it, so I'm hopeful that my GI will look at it. I'm not sure how computer savvy he is, so I didn't want to push it.
Yes, my list of intolerances is pretty complete for now. I just removed the yeast. Sandwiches made with yeast bread are very easy on my system. I can tolerate all chocolate if it's soy and dairy-free. IOW, chocolate is not a problem; the additives are. I've experimented on and off with corn and its derivatives and I don't seem to have any problems.
I don't think that my list of intolerances will ever be set in stone. I suspect that I can't tolerate capers. I didn't think capers were a legume, but Dee's recipe for home-made olive tapenade using capers definitely bothers me. Plain olive paste with herbs does not. I wonder if capers contain lectins?
I'd recommend that you revisit the Organic Better Than Bouillon soup bases at http://www.superiortouch.com. Whole Foods sells it now. The organic beef and chicken bases don't list any of the ingredients on your intolerance list. I know that you called the company earlier about the ingredients, but I have a feeling that they gave you the regular soup base ingredients. I called them afterward, and they reassured me that the list on the Organic jar is accurate. I eat soup for lunch about 4 times a week using this base. Because it's a paste, I can scoop out only enough base for one or two meals. I cook vegetables in the microwave, and add Boar's Head turkey cubes or ground beef. It takes me less than 15 minutes to prepare and is very satisfying.
Gloria
The Enterolab test results had the Enterolab URL on it, so I'm hopeful that my GI will look at it. I'm not sure how computer savvy he is, so I didn't want to push it.
Yes, my list of intolerances is pretty complete for now. I just removed the yeast. Sandwiches made with yeast bread are very easy on my system. I can tolerate all chocolate if it's soy and dairy-free. IOW, chocolate is not a problem; the additives are. I've experimented on and off with corn and its derivatives and I don't seem to have any problems.
I don't think that my list of intolerances will ever be set in stone. I suspect that I can't tolerate capers. I didn't think capers were a legume, but Dee's recipe for home-made olive tapenade using capers definitely bothers me. Plain olive paste with herbs does not. I wonder if capers contain lectins?
I'd recommend that you revisit the Organic Better Than Bouillon soup bases at http://www.superiortouch.com. Whole Foods sells it now. The organic beef and chicken bases don't list any of the ingredients on your intolerance list. I know that you called the company earlier about the ingredients, but I have a feeling that they gave you the regular soup base ingredients. I called them afterward, and they reassured me that the list on the Organic jar is accurate. I eat soup for lunch about 4 times a week using this base. Because it's a paste, I can scoop out only enough base for one or two meals. I cook vegetables in the microwave, and add Boar's Head turkey cubes or ground beef. It takes me less than 15 minutes to prepare and is very satisfying.
Gloria
You never know what you can do until you have to do it.
Gloria,
All living things contain lectins, but each species has it's own unique lectins. Our own bodies produce lectins, as part of our immune systems. Therefore, we certainly can't avoid all lectins, (unless we stop eating), we just have to selectively choose which ones to allow into our bodies. Some can even be beneficial for us, (for example, some lectins can prevent cancer from spreading). Here's some background info:
http://www.vrp.com/articles.aspx?ProdID=art2009&zTYPE=2
Maybe this holds a clue about the caper:
http://www3.interscience.wiley.com/jour ... 7/abstract
I found the information below, (in condensed form), in Wikipedia:
While allyl isothiocyanate obtained by dry distillation of mustard seeds is known as volatile oil of mustard, and is principally used as a flavoring agent in foods, synthetic allyl isothiocyanate is used as an insecticide, bacterialcide, and nematocide, and is used in certain cases for crop protection.
Hmmmmmmm.
Tex
All living things contain lectins, but each species has it's own unique lectins. Our own bodies produce lectins, as part of our immune systems. Therefore, we certainly can't avoid all lectins, (unless we stop eating), we just have to selectively choose which ones to allow into our bodies. Some can even be beneficial for us, (for example, some lectins can prevent cancer from spreading). Here's some background info:
http://www.vrp.com/articles.aspx?ProdID=art2009&zTYPE=2
Maybe this holds a clue about the caper:
From:Plants of the caper family (Capparidaceae), which is the tropical relative of the mustard family (Cruciferae), yield 'mustard oil' (iso thiocyanate). A review has been made of reported effects on the skin and mucous membranes of some of these plants, of their geographical distribution, and of some opportunities for human contact with them. Plants which yield iso thiocyanates can produce irritant dermatitis and some probably can produce allergic contact dermatitis. The Capparidaceae family provides an example of the necessity of recording botanical names rather than common names for plant species, when reporting contact dermatitis from plants.
http://www3.interscience.wiley.com/jour ... 7/abstract
I found the information below, (in condensed form), in Wikipedia:
While allyl isothiocyanate obtained by dry distillation of mustard seeds is known as volatile oil of mustard, and is principally used as a flavoring agent in foods, synthetic allyl isothiocyanate is used as an insecticide, bacterialcide, and nematocide, and is used in certain cases for crop protection.
Hmmmmmmm.
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.
Interesting about the capers.
Tex, thanks for the references on boswellia.....will check them out tonight. I knew we could count on our researcher extraordinaire to get the scoop!
Gloria - I will check out those soups again. Thanks for bringing it up. Also thanks for your recipe for "speed soup". LOL! Did you originally test positive for yeast with Dr. Fine as I did? Which bread do you do best with? I think I'll try corn first - it would open up lots of new options if I could tolerate it. Also, which chocolate is safe for you?
Polly
P.S. Gloria - just went to the soup website but can't find anywhere that they list the ingredients in each type. Do you know?
Tex, thanks for the references on boswellia.....will check them out tonight. I knew we could count on our researcher extraordinaire to get the scoop!
Gloria - I will check out those soups again. Thanks for bringing it up. Also thanks for your recipe for "speed soup". LOL! Did you originally test positive for yeast with Dr. Fine as I did? Which bread do you do best with? I think I'll try corn first - it would open up lots of new options if I could tolerate it. Also, which chocolate is safe for you?
Polly
P.S. Gloria - just went to the soup website but can't find anywhere that they list the ingredients in each type. Do you know?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
Yes, I did originally test positive for yeast from Enterolabs. I carefully avoided yeast for about 4 months. After that, I began eating egg-free Rice-Almond bread made by a company called Food for Life, available at Whole Foods and health food stores. I've been making my own bread with yeast and also have never noticed any problems, so I think yeast is OK.
Here are the ingredients in the soup base: The ingredients for the chicken broth are: Chicken meat and natural organic juices, salt, cane sugar, maltodextrin, natural flavor, dried onion, potato starch, dried garlic, tumeric and spice extractives.
I've been eating Enjoy Life chocolate chips. I also have tried some coconut chocolate ice cream made by Turtle Mountain (from Whole Foods). I can eat the chocolate Lära bars, too.
I hate to write this, but I just had my first D since I went off Entocort five weeks ago. Norman visited me this morning. I didn't eat any olive tapenade with the capers yesterday or today, so I'm concerned. I've been having less-than perfect Normans on and off for the past 3 weeks. Since they were solid, I didn't worry. I suspected the culprit was the olive tapenade. Now I'm worried. It could be any number of things, so I'm back to doing detective work. I hope it was the powdered vegetable coating on the rice crackers I ate for lunch. It could have contained powdered green beans. We have to constantly be vigilant with this disease.
Gloria
Yes, I did originally test positive for yeast from Enterolabs. I carefully avoided yeast for about 4 months. After that, I began eating egg-free Rice-Almond bread made by a company called Food for Life, available at Whole Foods and health food stores. I've been making my own bread with yeast and also have never noticed any problems, so I think yeast is OK.
Here are the ingredients in the soup base: The ingredients for the chicken broth are: Chicken meat and natural organic juices, salt, cane sugar, maltodextrin, natural flavor, dried onion, potato starch, dried garlic, tumeric and spice extractives.
I've been eating Enjoy Life chocolate chips. I also have tried some coconut chocolate ice cream made by Turtle Mountain (from Whole Foods). I can eat the chocolate Lära bars, too.
I hate to write this, but I just had my first D since I went off Entocort five weeks ago. Norman visited me this morning. I didn't eat any olive tapenade with the capers yesterday or today, so I'm concerned. I've been having less-than perfect Normans on and off for the past 3 weeks. Since they were solid, I didn't worry. I suspected the culprit was the olive tapenade. Now I'm worried. It could be any number of things, so I'm back to doing detective work. I hope it was the powdered vegetable coating on the rice crackers I ate for lunch. It could have contained powdered green beans. We have to constantly be vigilant with this disease.
Gloria
You never know what you can do until you have to do it.
Gloria,
In the U. S., there's a good chance that the maltodextrin is made from corn. It can also be made from wheat, rice or potato, (or any other starch, for that matter), but in this country, unless it specifies wheat on the label, it is probably derived from corn starch.
The current "irregularities" that you are experiencing, could be from an item, (or two), that you have reintroduced into your diet, that you are mildly sensitive to. Remember that items such as these, (low sensitivity level), can become a factor after you reach a certain threshold, due to cumulative effects over time. IOW, if you eat enough of them, within a certain time frame, some sort of reaction can be triggered. Anyway, that's one possibility to consider.
Please don't let it worry you unnecessarily. That's just one of the hazards of experimenting with your diet. We all do it, from time to time.
Tex
In the U. S., there's a good chance that the maltodextrin is made from corn. It can also be made from wheat, rice or potato, (or any other starch, for that matter), but in this country, unless it specifies wheat on the label, it is probably derived from corn starch.
The current "irregularities" that you are experiencing, could be from an item, (or two), that you have reintroduced into your diet, that you are mildly sensitive to. Remember that items such as these, (low sensitivity level), can become a factor after you reach a certain threshold, due to cumulative effects over time. IOW, if you eat enough of them, within a certain time frame, some sort of reaction can be triggered. Anyway, that's one possibility to consider.
Please don't let it worry you unnecessarily. That's just one of the hazards of experimenting with your diet. We all do it, from time to 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.
Oh, Gloria. Bummer about the D.....but par for the course, unfortunately. Especially with multiple intolerances, it's often 2 steps forward and one step back. Hmmmmm........ Maybe I'd better wait until you tweak your diet a little more before I try eating corn or chocolate again. LOL.
I'll look for that bread. Thanks.
Love,
Polly
I'll look for that bread. Thanks.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly, pardon me for chuckling, but that remark reminded me of a comedy line Johnny Carson once used on his show. Referring to the long-running nature show, (sponsored by Mutual of Omaha, I believe), that Marlin Perkins hosted on tv, (along with his co-host, Jim Fowler), Johnny deadpanned the line, "While Jim is wrestling with the man-eating crocodile, I'll be watching through heavy binoculars from the next hilltop".Polly wrote:Maybe I'd better wait until you tweak your diet a little more before I try eating corn or chocolate again. LOL.
That line always breaks me up, because it was so "quasi-typical" of the way that Marlin and Jim worked together. 
Love,
Tex
P S I don't blame you - I'd probably wait, too.
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.
Congrats Gloria, with educating your GI. I am also trying to get my GI motivated to help me, on my last visit I felt that he was giving me the gobys. He seems to want to get away from me, and suggested I try steroids which I am frightened to do.
So following Tex's advice I am testing out for Celiac and food intolerances, boy oh boy, would I just love to go into remission, back to my normal life of not worrying where the toilet was wherever I go.
Thanks Gloria for giving me hope
Kindest regards Janet
So following Tex's advice I am testing out for Celiac and food intolerances, boy oh boy, would I just love to go into remission, back to my normal life of not worrying where the toilet was wherever I go.
Thanks Gloria for giving me hope
Kindest regards Janet
jmg
You're welcome, Janet. So many others here have been an inspiration to me. I feel the least I can do is share my experience with others who are struggling. I have no regrets about using Entocort. I didn't have any side effects from it. On the contrary, the arthritis in my hands went away and now that I'm off it, some pain has returned. I wouldn't have used Prednisone, however. I also think the Enterolab tests help to determine food intolerances and I would recommend them if you can afford it. I went gluten-free for a month before the tests, but it didn't help my symptoms at all because I was also reacting to eggs, dairy, soy and legumes and didn't realize it. I would never have suspected eggs without the test results.
Polly,
I would hold off on the chocolate and corn if I were you, too. I'm not out of the woods yet.
I'm going to post my latest insights on my "Weaning Off Entocort" thread.
Gloria
Polly,
I would hold off on the chocolate and corn if I were you, too. I'm not out of the woods yet.
I'm going to post my latest insights on my "Weaning Off Entocort" thread.Gloria
You never know what you can do until you have to do it.