HI! FROM A NEWBIE
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
HI! FROM A NEWBIE
I am so glad I found this site, just to know that I am not alone. I started getting D about a year ago not too bad at first maybe 2-3 times a week then it gradually became 2-3 times a day. After blood tests and stool samples I tested positive for C Diff. After two antibiotics and a hospital stay later I was still having issues. I tested negative for C Diff three times in four months and was still having issues. so finally this past September (a few weeks after my 40th b-day) I had my first colonoscopy and guess what I was diagnosed with CC. I never heard of it before and was very scared, angry, upset, fustrated etc.... I am not used to being sick before the C Diff ( which the doctors have no idea how I got) I hadnt taken medication of any sort in over 10 years (and that was just antibiotics for the flu). I have never really been sick before. I eat healthy, exercise, maintain a healthy body weight. Well I have been on endocort now for about 2.5 months and feel pretty good, very tired, and have acne like a teenager, but the D is getting better some days yes and some days no. I am very slowly being tapered off and am hopeful. I have noticed some posts about diet and what not and my doctor did not put me on any restrictions. I was tested for gluten intolerance and that was negative, my blood sugar tested normal, and my postassium levels are back up to normal after my hospital stay last spring when they bottomed out at 0. I was just curious as to whether or not some restrictions might help, I havent really found any real "trigger" foods, as far as one food gives me more cramps or D over another. I am very new to this and could use all the advice and help and support I can get. Thanks for you time in reading my story.
Leslie,
Welcome. Sorry you've been through the wringer. C. diff was part of my MC onset as well, but I think not the main event.
The typical tests for gluten intolerance are notorious for false negatives - meaning they say "hey, no problem!" for a lot of people who turn out to be sickened by gluten. And it's a hard trigger to figure, because unless you eliminate it 100%, the inflammation and immune response will continue (for some of us, with shockingly tiny amounts). Unfortunately, most GI doctors, though they are aware of the possibility of false negatives with these tests, also do not believe that food has anything to do with digestion. (I think that is the dumbest thing I ever heard, btw - I had a dog who figured out that some foods made him sick, and stopped eating them, and believe me, that was not a fussy eater
)
In my opinion, while you have the Entocort on board, you might just give hard-core, serious gluten-free eating a try. While you're at it, and to maximize the help you get from the Entocort, you might also avoid dairy.
Like you, I "ate healthy" before I found myself here - a lot of us felt that way. So it's hard to completely wrap our minds around the idea that "whole grains" are not the friends we believed them to be. To make things even stranger for a healthier... for now, while your system is healing, a lot of raw fruits and veg can be very irritating. Fiber seems to be more of a mechanical problem to an inflamed system, as opposed to the biochemical process by which food intolerances make us ill.
You can also pursue more reliable tesing via enterolab.com, as many of us here have done.
Hope this helps, and again, welcome.
Please keep us posted, and let us know how we can help you along the way,
Sara
Welcome. Sorry you've been through the wringer. C. diff was part of my MC onset as well, but I think not the main event.
The typical tests for gluten intolerance are notorious for false negatives - meaning they say "hey, no problem!" for a lot of people who turn out to be sickened by gluten. And it's a hard trigger to figure, because unless you eliminate it 100%, the inflammation and immune response will continue (for some of us, with shockingly tiny amounts). Unfortunately, most GI doctors, though they are aware of the possibility of false negatives with these tests, also do not believe that food has anything to do with digestion. (I think that is the dumbest thing I ever heard, btw - I had a dog who figured out that some foods made him sick, and stopped eating them, and believe me, that was not a fussy eater
)In my opinion, while you have the Entocort on board, you might just give hard-core, serious gluten-free eating a try. While you're at it, and to maximize the help you get from the Entocort, you might also avoid dairy.
Like you, I "ate healthy" before I found myself here - a lot of us felt that way. So it's hard to completely wrap our minds around the idea that "whole grains" are not the friends we believed them to be. To make things even stranger for a healthier... for now, while your system is healing, a lot of raw fruits and veg can be very irritating. Fiber seems to be more of a mechanical problem to an inflamed system, as opposed to the biochemical process by which food intolerances make us ill.
You can also pursue more reliable tesing via enterolab.com, as many of us here have done.
Hope this helps, and again, welcome.
Please keep us posted, and let us know how we can help you along the way,
Sara
Hi Leslie,
Welcome to our internet family. I agree with Sara 100%. We have found that unless we make diet changes early enough in the process, when the Entocort treatment is discontinued, our symptoms always return, because our food-sensitivities continue to generate new inflammation, by causing an autoimmune reaction. For some of us, Entocort will control the D, as long as we take it, but without the Entocort, the D always returns. Also, the fact that Entocort has not resolved all of your symptoms, (fatigue, for example), is an indication that the inflammation is still being generated.
Unfortunately, most GI specialists don't understand how to treat MC - all they know to do is to prescribe drugs, and that isn't the best way to treat it. Drugs help, but they only treat the symptoms - they don't address the problem.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I agree with Sara 100%. We have found that unless we make diet changes early enough in the process, when the Entocort treatment is discontinued, our symptoms always return, because our food-sensitivities continue to generate new inflammation, by causing an autoimmune reaction. For some of us, Entocort will control the D, as long as we take it, but without the Entocort, the D always returns. Also, the fact that Entocort has not resolved all of your symptoms, (fatigue, for example), is an indication that the inflammation is still being generated.
Unfortunately, most GI specialists don't understand how to treat MC - all they know to do is to prescribe drugs, and that isn't the best way to treat it. Drugs help, but they only treat the symptoms - they don't address the problem.
Again, welcome aboard, and please feel free to ask anything.
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 Leslie,
Welcome from someone nearly as new as you, and still in inflammation stage.
I also ate healthy, although I was sick and didn't know what it was. When I was finally dx'd my doctor refused to agree that all my digestive troubles, from input to output, was connected to diet in any way. In fact, I think he saw each part as a separate entity: esophagus is not connected to the stomach; stomach not connected to the small intestine and so forth. He dx'd each separately and didn't tie the pieces together. Very odd.
The wonderful people on this board know way more than the doctors about this condition, and will help you figure it out.
First thing is to go gluten free. Not a little bit, or almost gluten free. Completely! Read every label! Check your kitchen, ask questions here and remember that no gluten can pass your lips in any form, including drugs.
As Tex says, since you are taking entocort you might be able to get things under control with just that. Or try dairy too.
It's SO worth it.
Lesley
Welcome from someone nearly as new as you, and still in inflammation stage.
I also ate healthy, although I was sick and didn't know what it was. When I was finally dx'd my doctor refused to agree that all my digestive troubles, from input to output, was connected to diet in any way. In fact, I think he saw each part as a separate entity: esophagus is not connected to the stomach; stomach not connected to the small intestine and so forth. He dx'd each separately and didn't tie the pieces together. Very odd.
The wonderful people on this board know way more than the doctors about this condition, and will help you figure it out.
First thing is to go gluten free. Not a little bit, or almost gluten free. Completely! Read every label! Check your kitchen, ask questions here and remember that no gluten can pass your lips in any form, including drugs.
As Tex says, since you are taking entocort you might be able to get things under control with just that. Or try dairy too.
It's SO worth it.
Lesley
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hello Leslie!!
Welcome to the forum! This is the best place in the world to get answers. There are over 1000 members here now, and just about all of them will tell you that the first step to their recovery was eliminating gluten from their diets. The way I see it, you've got nothing to lose. I didn't make the connection between gluten and my symptoms right away--before I found this site, I would stop eating a food for a few days or a week, and if nothing changed, I would assume I could eat that food with no problems. What made the difference was eliminating gluten COMPLETELY and keeping a diary of everything I ate, drank, or took med-wise, and also my symptoms, including non-GI ones like headache, fatigue, and muscle weakness. I was able to see a pattern then, and realized that while gluten was the primary agitator, I also had some secondary food intolerances. Once you get rid of what bothers you, you should see some improvement in your symptoms. It may take some time, but you'll get there!
Best of luck to you in your search!
Welcome to the forum! This is the best place in the world to get answers. There are over 1000 members here now, and just about all of them will tell you that the first step to their recovery was eliminating gluten from their diets. The way I see it, you've got nothing to lose. I didn't make the connection between gluten and my symptoms right away--before I found this site, I would stop eating a food for a few days or a week, and if nothing changed, I would assume I could eat that food with no problems. What made the difference was eliminating gluten COMPLETELY and keeping a diary of everything I ate, drank, or took med-wise, and also my symptoms, including non-GI ones like headache, fatigue, and muscle weakness. I was able to see a pattern then, and realized that while gluten was the primary agitator, I also had some secondary food intolerances. Once you get rid of what bothers you, you should see some improvement in your symptoms. It may take some time, but you'll get there!
Best of luck to you in your search!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hi Leslie,
I also want to welcome you. If you are like the majority here, you are just now getting the information and guidance you need to get healthy again.
What Sara said is true for most of us. It is a journey and I know it is overwhelming at first. You can and WILL get better. There is a lot to read, many decisions about treatment options that people make. When I came here in late '09 I chose to do the Enterolab testing. Since then my daughter and grandson have tested via Enterolab, as I did, as gluten intolerant. We all share one gene, the 501 gene, which many of us here share. We all have a different second gene for gluten sensitivity and we are all feeling better now.
I am gluten free, have been since 8'09 and have had what was a lifetime of illness disappear since then. Same with both my daughters and all 3 grandkids. You have a lot of research to do. I did it too. I hope you will find the answers here. I'm happy you found us.
Connie
I also want to welcome you. If you are like the majority here, you are just now getting the information and guidance you need to get healthy again.
What Sara said is true for most of us. It is a journey and I know it is overwhelming at first. You can and WILL get better. There is a lot to read, many decisions about treatment options that people make. When I came here in late '09 I chose to do the Enterolab testing. Since then my daughter and grandson have tested via Enterolab, as I did, as gluten intolerant. We all share one gene, the 501 gene, which many of us here share. We all have a different second gene for gluten sensitivity and we are all feeling better now.
I am gluten free, have been since 8'09 and have had what was a lifetime of illness disappear since then. Same with both my daughters and all 3 grandkids. You have a lot of research to do. I did it too. I hope you will find the answers here. I'm happy you found us.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Welcome, Leslie. I don't have any insights to add to what others have already said, but I do encourage you to go completely gluten free. You may also need to eliminate dairy and soy. The Enterolab tests are a really good place to start, to give some confirmation to the suspected intolerances. Keeping a diary of what you eat, and your symptoms is a big help too, although I couldn't see any patterns until I cut out gluten, and quit reacting to everything in random fashion. Once healing started, then I could see patterns more clearly.
Hang in there. It will get better.
Love,
Martha
Hang in there. It will get better.
Love,
Martha
Martha
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome leslie
as if getting a diagnosis is not overwhelming enough, reading the posts and absorbing all the info on this forum can be.
I reiterate the suggestion of eliminating gluten and any other ingredients like dairy and soy that may be causing issues.
these changes are not easy and it will affect elements of your life, but it is definately worth it.
It took me about 6 months or so via the elmination diet to identify my major triggers, and in the last couple of months a technique called BIA (which is similar to the MRT testing) identified the foods that a maybe triggers.
prior to the MC diagnosis i lived on fresh fruit and raw vege salads, my eating plan now is quite different.
hang in there,
take care
as if getting a diagnosis is not overwhelming enough, reading the posts and absorbing all the info on this forum can be.
I reiterate the suggestion of eliminating gluten and any other ingredients like dairy and soy that may be causing issues.
these changes are not easy and it will affect elements of your life, but it is definately worth it.
It took me about 6 months or so via the elmination diet to identify my major triggers, and in the last couple of months a technique called BIA (which is similar to the MRT testing) identified the foods that a maybe triggers.
prior to the MC diagnosis i lived on fresh fruit and raw vege salads, my eating plan now is quite different.
hang in there,
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Hi Leslie,
I am also new here. I was having D at my worst up to 25 times a day, but when I joined this group it was 8 to 10 times a day. Coming here made me realize that I had to make a change in my diet - totally gluten free. I have been on a gluten-free diet for about 1-1/2 weeks and am now only having to go 3 or 4 times a day. I can "FEEL" the change already. It is not as difficult as I imagined it would be. I stay simple yet eat a lot. All foods I eat are in their natural state (meats, vegetables are either canned or frozen and cooked well, potatoes, brown rice, bananas or other canned fruits, rice cakes for snacking with peanut butter on them, and many more). I have found there are more gluten-free foods available out there such as for snacking. And as Sara has said - Lays potato chips are gluten-free too!! I know it's possible I may be intolerant to other foods, but I'm just going to start here and take it one day at a time.
I am thrilled I found this site. None of us has to feel alone. There is a lot of information offered plus encouragement.
I hope you are doing well.
Well, another thing that is important is our rest.
Paula
I am also new here. I was having D at my worst up to 25 times a day, but when I joined this group it was 8 to 10 times a day. Coming here made me realize that I had to make a change in my diet - totally gluten free. I have been on a gluten-free diet for about 1-1/2 weeks and am now only having to go 3 or 4 times a day. I can "FEEL" the change already. It is not as difficult as I imagined it would be. I stay simple yet eat a lot. All foods I eat are in their natural state (meats, vegetables are either canned or frozen and cooked well, potatoes, brown rice, bananas or other canned fruits, rice cakes for snacking with peanut butter on them, and many more). I have found there are more gluten-free foods available out there such as for snacking. And as Sara has said - Lays potato chips are gluten-free too!! I know it's possible I may be intolerant to other foods, but I'm just going to start here and take it one day at a time.
I am thrilled I found this site. None of us has to feel alone. There is a lot of information offered plus encouragement.
I hope you are doing well.
Well, another thing that is important is our rest.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
-
humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Hi again, Leslie,
I want to mention that I also was never sick, exercised very regularly, good body weight and ate correctly. I was diagnosed with LC from a colonoscopy in June of 2010. The doctors did not recommend any diet change for me either. However, I decided to go to a naturopathic doctor who did recommend a gluten-free diet to me about 2 months ago. It was very frustrating and seemed impossible. I wasn't used to "thinking" about what I was going to eat. I still keep my medical doctor informed as to the treatment plan I am on for this, and she is in agreement with what I am doing.
Each of us is similar, yet we all have to find what will work for us. A gluten-free diet is a very good place to start.
I want to mention that I also was never sick, exercised very regularly, good body weight and ate correctly. I was diagnosed with LC from a colonoscopy in June of 2010. The doctors did not recommend any diet change for me either. However, I decided to go to a naturopathic doctor who did recommend a gluten-free diet to me about 2 months ago. It was very frustrating and seemed impossible. I wasn't used to "thinking" about what I was going to eat. I still keep my medical doctor informed as to the treatment plan I am on for this, and she is in agreement with what I am doing.
Each of us is similar, yet we all have to find what will work for us. A gluten-free diet is a very good place to start.
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."