Visit the Microscopic Colitis Foundation Website
Hello everyone,
I am in the process of trying to figure out what exactly is going on plus intolerances that I may have. I was diagnosed in my early 20's as IBS/colitis I am now 44. I have had periods of remissions ect but it always comes back. My main symptoms are loose stools (every so often constipation but predominately D), joint aches, fatigue, brain fog, mouth ulcers, & eczema (not currently). My BIL is a celiac and when I was having a tough time in December of 2007 when he was visiting, he told me my symptoms were just like his. I started eliminating gluten and felt 75% better. I ordered a celiac panel and it of course came back negative since I already started the diet. I didn't care because I felt better so stayed with the diet.
Four months later, the symptoms started coming back and my food journal showed that it was always after eating dairy such as gluten free pizza etc. So I eliminated dairy 80% of the time, I have a huge weekness for cheese ( We own a couple of restaurants and one is fine dining with a wonderful cheeses from all over the world). Felt much better but still not right. Whenever I eat salads, fruits (other than bananas) the symptoms come back. Also when I bought tofutti cheese ( a soy product) I was extremely miserable and thought soy maybe a problem so I switched to almond milk. So I had a pretty limited diet and my side of the family started telling me how worried they were that I kept taking away so many nutritious foods ect. and I started listening to them thinking yeah, they are right.
I added Gluten back in May so I could try to do testing again. Two weeks ago, I had to stop because I've been so miserable. So I made an appointment with Dr. Lewey, some of you may have heard of him he is very well known in the celiac circles. I can't see him until August 6th. I kept telling my husband that I just couldn't wait that long to keep eating gluten. We decided to do testing with Enterolab and I am mailing my labwork tomorrow UPS. I know it will take 3 weeks to get an answer but at least I don't have to eat gluten, and Dr. Lewey is more supportive of Dr. Fine.
I am here because I read on a celiac board of a member who had both gluten intolerance and MC. I never knew what kind of colitis I had when I was younger, the GI just said "colitis" but thought that maybe since the IBS diet never worked for me, the fiber just made me worse, then maybe I should check further into the colitis issue. I will still see Dr. Lewey on the 6th but was wondering if anyone had any suggestions for me or comments on if I am even on the right path! The enterolab was expensive but looking forward to what they have to say, I did the big 369.00 package to include malabsorption, Gene testing ect.
Thanks for reading!
newbie with questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
newbie with questions
Kathy
Hi Kathy,
Welcome to our internet family. I have to say that you have done your homework, and you are definitely headed in the right direction with your treatment. Unfortunately, most of us have found that we are extremely sensitive to the foods that we react to, so the only way to maintain remission by diet, is to avoid even the smallest traces of them, 100% of the time. I realize that owning those great restaurants makes such abstinence a very tough project. The payoff will arrive, though, after your intestines have had enough time to heal from all the damage caused by the gluten and other intolerances. Many of us have found that if we are totally faithful to our diet, after a couple of years or so of healing, we can begin to add many of the foods that are "irritants", (but not actually intolerances), back into our diet. These would be foods such as fruits, vegetables, sugars, etc. The foods to which we are truly intolerrant, will remain a problem forever, presumably, and must always be avoided. These include, (as you have already found), gluten, and dairy, for almost all of us, and soy, for about half of us.
Yes, we're very familiar with Dr. Lewey's work, and we fully support his research and his philosophies about the digestive system. One of our members, (Polly), is also an MD, and they occasionally exchange ideas, using e-mails. He is one of only a handful of "enlightened" GI docs in this country, and you are very fortunate to have an appointment with him. I'm sure that he will have some excellent insight to offer, concerning your long struggle with GI issues.
I can't offer much advice - you're already headed down the correct path, and ordering those tests, to verify your food intolerances, will remove any doubts about what foods you absolutely have to avoid. Regarding the type of colitis that you have, unless you occasionally pass blood with your stools, the odds are very high, (IMO), that you have microscopic colitis, in some form. If you could get a copy of that old pathology report, from the records department of the hospital where the procedure was done, we could probably interpret it, but unless you have recently had a colonoscopy with biopsies, Dr. Lewey will probably want to schedule an exam, anyway, to verify the diagnosis. It's certainly possible that you may have both celiac disease and MC.
Back when I did some testing at Enterolab, the turnaround time was 10 to15 days, but they may be busier these days, of course. I received my results by e-mail, on a Sunday afternoon.
I can't think of anything that you need to do differently, until those test results arrive. You're definitely on track, to get your symptoms under control. We'll be looking forward to seeing the lab results when they arrive. Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
Welcome to our internet family. I have to say that you have done your homework, and you are definitely headed in the right direction with your treatment. Unfortunately, most of us have found that we are extremely sensitive to the foods that we react to, so the only way to maintain remission by diet, is to avoid even the smallest traces of them, 100% of the time. I realize that owning those great restaurants makes such abstinence a very tough project. The payoff will arrive, though, after your intestines have had enough time to heal from all the damage caused by the gluten and other intolerances. Many of us have found that if we are totally faithful to our diet, after a couple of years or so of healing, we can begin to add many of the foods that are "irritants", (but not actually intolerances), back into our diet. These would be foods such as fruits, vegetables, sugars, etc. The foods to which we are truly intolerrant, will remain a problem forever, presumably, and must always be avoided. These include, (as you have already found), gluten, and dairy, for almost all of us, and soy, for about half of us.
Yes, we're very familiar with Dr. Lewey's work, and we fully support his research and his philosophies about the digestive system. One of our members, (Polly), is also an MD, and they occasionally exchange ideas, using e-mails. He is one of only a handful of "enlightened" GI docs in this country, and you are very fortunate to have an appointment with him. I'm sure that he will have some excellent insight to offer, concerning your long struggle with GI issues.
I can't offer much advice - you're already headed down the correct path, and ordering those tests, to verify your food intolerances, will remove any doubts about what foods you absolutely have to avoid. Regarding the type of colitis that you have, unless you occasionally pass blood with your stools, the odds are very high, (IMO), that you have microscopic colitis, in some form. If you could get a copy of that old pathology report, from the records department of the hospital where the procedure was done, we could probably interpret it, but unless you have recently had a colonoscopy with biopsies, Dr. Lewey will probably want to schedule an exam, anyway, to verify the diagnosis. It's certainly possible that you may have both celiac disease and MC.
Back when I did some testing at Enterolab, the turnaround time was 10 to15 days, but they may be busier these days, of course. I received my results by e-mail, on a Sunday afternoon.
I can't think of anything that you need to do differently, until those test results arrive. You're definitely on track, to get your symptoms under control. We'll be looking forward to seeing the lab results when they arrive. Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Kathy and 
I agree with everything Tex has already said and wanted to let you know that we are happy you are here. Your plan is excellent - please let us know your Enterolab results when you get them. And ask any questions you might have.
Cheese! I love it too, and it is what I miss the most out of all of my intolerances. I used to have dreams about eating a grilled cheese sandwich! Most here have a full dairy intolerance along with their gluten intolerance but some don't. So maybe you will be one of the lucky ones. It could be that you are simply lactose-intolerant (unable to digest the milk SUGAR) rather than fully dairy-intolerant (unable to digest the milk PROTEIN). If this should turn out to be the case, then you should be able to eat cheeses that have been aged more than 6 mo., since they lose their lactose over time. (Of course, you may a cheese expert and already know this). However, it is more likely to have a full dairy intolerance here. Have you tried sheep or goat cheese? I have read that some people can tolerate them - unfortunately, I am not one of them.
Because I have multiple intolerances I have found that the paleo diet works best for me. It is very nutritious - in fact, it may be a lot healthier than one with lots of grains/beans. The best book on this is the "Paleo Diet" by Cordain. Very scientific and well-referenced. Also, I have found that over time I have been able to add back some "irritant" foods, like tomatoes.
Love,
Polly
I agree with everything Tex has already said and wanted to let you know that we are happy you are here. Your plan is excellent - please let us know your Enterolab results when you get them. And ask any questions you might have.
Cheese! I love it too, and it is what I miss the most out of all of my intolerances. I used to have dreams about eating a grilled cheese sandwich! Most here have a full dairy intolerance along with their gluten intolerance but some don't. So maybe you will be one of the lucky ones. It could be that you are simply lactose-intolerant (unable to digest the milk SUGAR) rather than fully dairy-intolerant (unable to digest the milk PROTEIN). If this should turn out to be the case, then you should be able to eat cheeses that have been aged more than 6 mo., since they lose their lactose over time. (Of course, you may a cheese expert and already know this). However, it is more likely to have a full dairy intolerance here. Have you tried sheep or goat cheese? I have read that some people can tolerate them - unfortunately, I am not one of them.
Because I have multiple intolerances I have found that the paleo diet works best for me. It is very nutritious - in fact, it may be a lot healthier than one with lots of grains/beans. The best book on this is the "Paleo Diet" by Cordain. Very scientific and well-referenced. Also, I have found that over time I have been able to add back some "irritant" foods, like tomatoes.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Kathy 
And welcome to our "home" here. You certainly seem to have a very good grasp of what is going on and how to handle it. I'm sure you will be an asset to our site.
Looking forward to seeing more of your posts.
Shirley
And welcome to our "home" here. You certainly seem to have a very good grasp of what is going on and how to handle it. I'm sure you will be an asset to our site.
Looking forward to seeing more of your posts.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
-
kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
Thank you Tex, Polly, and Shirely for your warm replies!
Tex, we used to move every 2 years working for a corporate restaurant chain (thank goodness those days are over) I was a young'un as my grandpa would say and can't even remember which city I was in at the time. I'm sure Dr. Lewey will want to redo the tests since its been over 20 years. I am lucky to live in Colorado Springs where Dr. Lewey practices. I heard of him through the local celiac group. Their leader uses him and recommended him to me. I have only had bloody diarrhea twice and this was when I got the colitis diagnoses, it was a hemorrhoid causing the bleeding though. I would think if it was UC I would have had bloody diarrhea again since I was early 20 something. So we will see. I wondered about MC in the past, but the internet medical sites always say it happens with older people or you have to have water explosive D and that does happen occasionally, but mostly I am just loose. The gal on the celiac forum is in her 30's and she posted a link to this site, so glad she did!
Interesting about the cheese Polly. I do like old amsterdam aged over 20 years, will have to experiment with that when I feel better. I don't know too much about cheese, our chef chooses all the cheese for the restaurant, I will have to ask him what is what. I know we had a drunken goat cheese on the menu once....it was pretty good. They are always careful with me, we have a reputation of taking care of celiac and other dietary intolerances, allergies at both restaurants, that is how I met the celiac leader is by doing a gluten free dinner for their dinner club. My chef was extremely worried about doing over 30 gluten intolerant, celiac etc all at once but he did great! He even made them a homemade ravioli with a sweet potato pasta. I didn't try it because of the dairy but everyone who did loved it!
I eat almost Paleo most of the time. I don't care for the gluten free breads out there, don't like the heavy ricey taste, so often I do without or use a white corn tortilla. Thanks for the book info, I will definately look into it. I have a low carb cookbook that I use a lot. When I did atkins over 7 years ago, I felt fantastic....duh but got bored of the same recipes.
Thanks again for the welcome and will post the Enterolab results when I get them!
Tex, we used to move every 2 years working for a corporate restaurant chain (thank goodness those days are over) I was a young'un as my grandpa would say and can't even remember which city I was in at the time. I'm sure Dr. Lewey will want to redo the tests since its been over 20 years. I am lucky to live in Colorado Springs where Dr. Lewey practices. I heard of him through the local celiac group. Their leader uses him and recommended him to me. I have only had bloody diarrhea twice and this was when I got the colitis diagnoses, it was a hemorrhoid causing the bleeding though. I would think if it was UC I would have had bloody diarrhea again since I was early 20 something. So we will see. I wondered about MC in the past, but the internet medical sites always say it happens with older people or you have to have water explosive D and that does happen occasionally, but mostly I am just loose. The gal on the celiac forum is in her 30's and she posted a link to this site, so glad she did!
Interesting about the cheese Polly. I do like old amsterdam aged over 20 years, will have to experiment with that when I feel better. I don't know too much about cheese, our chef chooses all the cheese for the restaurant, I will have to ask him what is what. I know we had a drunken goat cheese on the menu once....it was pretty good. They are always careful with me, we have a reputation of taking care of celiac and other dietary intolerances, allergies at both restaurants, that is how I met the celiac leader is by doing a gluten free dinner for their dinner club. My chef was extremely worried about doing over 30 gluten intolerant, celiac etc all at once but he did great! He even made them a homemade ravioli with a sweet potato pasta. I didn't try it because of the dairy but everyone who did loved it!
I eat almost Paleo most of the time. I don't care for the gluten free breads out there, don't like the heavy ricey taste, so often I do without or use a white corn tortilla. Thanks for the book info, I will definately look into it. I have a low carb cookbook that I use a lot. When I did atkins over 7 years ago, I felt fantastic....duh but got bored of the same recipes.
Thanks again for the welcome and will post the Enterolab results when I get them!
Kathy
Kathy,
Unfortunately, 'rhoids, and a condition often referred to as "baboon butt", (a phrase originated, I believe, by our resident chef, Dee), are rather common with MC, during major flares. Ointments that contain zinc oxide will generally help to bring prompt relief, at least regarding the rash.
As you have found, age is not a particularly relevant factor, with MC, contrary to out-dated medical descriptions of the disease, (that were incorrect when they were originally written, of course). Our youngest member is now three years old, (actually her mom joined, on her daughter's behalf, of course), but she was only two, when she was diagnosed with MC. She's doing great now, after cutting gluten, dairy, and soy, out of her diet. Her doctors were amazed at how quickly she recovered, on the diet, and they wanted to do a case study. I don't know if her mother gave them permission to do the study or not, though.
If you will go through the hundreds of recipes that Dee has assembled, (in Dee's Kitchen), I'm sure that you will find many that appeal to you. These should eliminate the risk of becoming bored with the "same old recipes", I believe. Dee is a professional chef, and all of her recipes are free of gluten, dairy, and soy. In addition, they are typically as good as, or better than, most conventional recipes, as far as taste appeal, and general palatability are concerned. Many of these recipes are gourmet quality. You will find her latest listings in "Dee's Food Blog", (there's a link toward the top of the index page of this site), where many mouth-watering, complete gourmet meals are listed. I would assume though, that if you would like to add some of these recipes to your offerings at your restaurants, you would need to ask for Dee's permission, of course.
I use white corn tortillas as a bread replacement myself, most of the time, but if you might be interested in trying a "safe" bread that is very close to being as good as conventional wheat-based breads, I highly recommend the bread mixes developed by Anna Sobaski, available at this site:
http://www.breadsfromanna.com/
Note that there are several versions of "regular" bread mixes, depending on the allergens you want to avoid, plus mixes for other specialty breads, pie crusts, pancakes, etc. The bread mixes that I have tried from there, will allow you to make bread that is light, fluffy, moist, and great for making sandwiches. It doesn't turn into crumbs in your hands, if you try to slice it, the way that most GF "doorstop" bread does.
I'm definitely looking forward to hearing what you may learn from Dr. Lewey, also.
Tex
Unfortunately, 'rhoids, and a condition often referred to as "baboon butt", (a phrase originated, I believe, by our resident chef, Dee), are rather common with MC, during major flares. Ointments that contain zinc oxide will generally help to bring prompt relief, at least regarding the rash.
As you have found, age is not a particularly relevant factor, with MC, contrary to out-dated medical descriptions of the disease, (that were incorrect when they were originally written, of course). Our youngest member is now three years old, (actually her mom joined, on her daughter's behalf, of course), but she was only two, when she was diagnosed with MC. She's doing great now, after cutting gluten, dairy, and soy, out of her diet. Her doctors were amazed at how quickly she recovered, on the diet, and they wanted to do a case study. I don't know if her mother gave them permission to do the study or not, though.
If you will go through the hundreds of recipes that Dee has assembled, (in Dee's Kitchen), I'm sure that you will find many that appeal to you. These should eliminate the risk of becoming bored with the "same old recipes", I believe. Dee is a professional chef, and all of her recipes are free of gluten, dairy, and soy. In addition, they are typically as good as, or better than, most conventional recipes, as far as taste appeal, and general palatability are concerned. Many of these recipes are gourmet quality. You will find her latest listings in "Dee's Food Blog", (there's a link toward the top of the index page of this site), where many mouth-watering, complete gourmet meals are listed. I would assume though, that if you would like to add some of these recipes to your offerings at your restaurants, you would need to ask for Dee's permission, of course.
I use white corn tortillas as a bread replacement myself, most of the time, but if you might be interested in trying a "safe" bread that is very close to being as good as conventional wheat-based breads, I highly recommend the bread mixes developed by Anna Sobaski, available at this site:
http://www.breadsfromanna.com/
Note that there are several versions of "regular" bread mixes, depending on the allergens you want to avoid, plus mixes for other specialty breads, pie crusts, pancakes, etc. The bread mixes that I have tried from there, will allow you to make bread that is light, fluffy, moist, and great for making sandwiches. It doesn't turn into crumbs in your hands, if you try to slice it, the way that most GF "doorstop" bread does.
I'm definitely looking forward to hearing what you may learn from Dr. Lewey, 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.
Hi Kathy,
Welcome aboard!
I was just thinking as I read your posts that you have a terrific opportunity to put your chefs to work on menu items that are free of the most common food sensitivities among MC'rs. After all, there are lots of ways to make foods taste good without using all that stuff.
Oh, and when you come up with a good menu, I want directions to that restaurant!!!
Yours, Luce
Welcome aboard!
I was just thinking as I read your posts that you have a terrific opportunity to put your chefs to work on menu items that are free of the most common food sensitivities among MC'rs. After all, there are lots of ways to make foods taste good without using all that stuff.
Oh, and when you come up with a good menu, I want directions to that restaurant!!!
Yours, Luce
-
kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
My fine dining restaurant features colorado cuisine with a lot of wild game such as elk, antelope, red deer, and wild boar. My chef's make everything from scratch (he personally lives that way and will not buy anything processed, he dated a girl that put hot dogs in his fridge and he threw them away, she didnt last long!). We state on the menu that we can accommodate any food intolerance. The chef usually comes to the table to discuss entree decisions but they have gluten and dairy free nailed down. The other restaurant is a steak house that is extremely busy during tourist season (wish it was always tourist season). We have a gluten free menu that they use but won't stray from that because they are too busy and we want to keep everyone safe. I am not here to promote my business but if you are interested just post me a private message.
Kathy
Kathy,
Since worry-free gluten-free dining is a topic that is dear to the hearts of most of us here, I see nothing wrong with you posting your restaurant address information, (for both of them, if you want). Feel free to add it to your signature line, so that the information will appear with every post you make. I wouldn't want to open this site to ads from GF vendors in general, but we often post contact information for GF resources. Besides, you are one of the family here now, and special privileges go with that.
Since your restaurant serves wild game, that might put it in the paleo category, for those on the paleo diet. Besides, we have a number of members in Colorado, who might benefit from that information, to say nothing of the rest of us who might find ourselves traveling there, one of these days, and looking for a safe place to eat.
Tex
Since worry-free gluten-free dining is a topic that is dear to the hearts of most of us here, I see nothing wrong with you posting your restaurant address information, (for both of them, if you want). Feel free to add it to your signature line, so that the information will appear with every post you make. I wouldn't want to open this site to ads from GF vendors in general, but we often post contact information for GF resources. Besides, you are one of the family here now, and special privileges go with that.
Since your restaurant serves wild game, that might put it in the paleo category, for those on the paleo diet. Besides, we have a number of members in Colorado, who might benefit from that information, to say nothing of the rest of us who might find ourselves traveling there, one of these days, and looking for a safe place to eat.
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.
-
kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
You guys are great! This forum is so wonderful at making people feel at home! Anyone who is interested can go to http://www.craftwood.com/ or http://www.stagecoachinn.com/ to view menu's and get address if you are in colorado. Both restaurants are in Manitou Springs colorado.
Kathy
Pity I am so far away. But, who knows I may visit the States one day........ all best antI would really love to visit Colorado. My late husband used to go hunting there in the mountains. He loved it. I think he hunted the mountains somewhere near Vail, but he was in other areas also. He thought the state was terriffic.
Shirley
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill