Hi,
Been a member for awhile - first post. Diagnosed with microscopic colitis almost 3 years ago - gone from bad to worse. If I eat I can't leave the house. Been off of gluten for 2 years. For MC have been on Budesonide (a few times and I relapse after taper), azathioprine (allergic reaction after 1 dose) so took its alternative (mecaptourine - spelling it wrong) and had no results plus night time hallucinations and beyond fatigue. Local GI didn't know what to do with me so sent me to Mayo in Rochester,MN who started me on fiber and binder of Welchol and Immodium. At max dose of both but no relief from noisey noxious bathroom visits. Been on them for months. Quit fiber drink as it didn't seem to help.
Doc ordered a 48 hour stool collection and results are in - lab marked several 'high' but apparently my doc at Mayo is gone until the 25th... When I pushed them a little indicating the nurse should please talk to whoever backed up my doc as I was miserable and getting desperate they RXd xifaxin (as a trial for gut bacteria overgrowth - thank goodness for insurance otherwise it was almost $900 for only 2 weeks!) from what I can discern from collection test I'm malabsorbing fat so I'm trying to eat low fat. I can't find anything on google about interpreting the other results marked high.
Before starting the xifaxin I did a SIBO breath test for gut bacteria and got those results today and breath test negative so will complete course of xifaxin.
Have tried searching web for malabsorption info but what I seem to find is over my head. What I'm really wondering is if anyone has any idea what next steps might be logical? I'm so frustrated with doctors - three years is a very long time to have numerous explosive episodes accompanied by gut pain - night time episodes too.
Im considering asking doctor to put me back on Budesonide/entocort as a maintenance med if that is what I have to do to get a life back.
Am getting tired of rice and gluten free pasta. They are dry by themselves. Got some low fat butter (country crock) but am wondering how much fat I should limit myself to? Doctor said I should be able to eat a normal diet and shouldn't drink any smoothie type stuff.
Am trying to care for an adult child with special needs in the process. Any suggestions for anything greatly appreciated!
Malabsorption?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Malabsorption?
"The best and most beautiful things in the world cannot be seen or even touched; they must be felt with the heart." Helen Keller
Hello Gerilyn,
Welcome, I'm glad you're finally posting. I'm wondering if you really understand the diet requirements necessary in order to control MC symptoms. Have you done any serious reading of posts here? Fiber is one of the worst things we can eat when our MC is active. Fiber will absolutely prevent remission, even if we do everything else right. Sometimes budesonide can overcome the adverse effects of fiber, but as you discovered, if you are still eating foods that cause you to react (and that includes fiber), when you wean off budesonide the MC symptoms will relapse. Avoiding the foods that cause us to react has to be 100 %. 99.9 % is not good enough and will not bring remission.
The only food sensitivity tests that are accurate and reliable for detecting the type of food sensitivities associated with MC are available at EnteroLab, in Dallas, TX, and no where else in the world. But avoiding gluten, dairy and soy is a good start, and works for some of us. However, if you are eating low fat butter, then you are obviously not avoiding dairy products, so it's not surprising that you are not able to control your symptoms by diet changes. Simply eating less of a food that causes inflammation will not stop the inflammation. You have to avoid those foods 100 %, 24x7.
You are wasting your time and money trying to control MC by taking advice from the GI department at the Mayo Clinic. The GI department at the Mayo seems to be really out of the loop when it comes to treating MC. For the most part, they don't have a clue, because they refuse to recognize that food sensitivities are the cause of the inflammation that perpetuates MC symptoms in most cases. No other members here have ever received any beneficial MC treatment advice from the Mayo, either, FWIW.
Many members here have tried xifaxin. For some it seems to help for a week or so and then any benefits disappear. Some have even repeated the treatment but it's always a waste of money.
You can download some guidelines for selecting foods for a recovery diet at the link below:
http://www.microscopiccolitisfoundation ... 070516.pdf
Have you read the helpful information in the Guidelines for Recovery section at the link below?
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
We would like to help in any way we can, but controlling this disease is not easy (if it were easy the GI docs could do it), so you have to learn how to treat yourself by reading the information available here and asking questions whenever you can't find any answers you need.
Again, welcome to the group, and please feel free to ask anything.
Tex
Welcome, I'm glad you're finally posting. I'm wondering if you really understand the diet requirements necessary in order to control MC symptoms. Have you done any serious reading of posts here? Fiber is one of the worst things we can eat when our MC is active. Fiber will absolutely prevent remission, even if we do everything else right. Sometimes budesonide can overcome the adverse effects of fiber, but as you discovered, if you are still eating foods that cause you to react (and that includes fiber), when you wean off budesonide the MC symptoms will relapse. Avoiding the foods that cause us to react has to be 100 %. 99.9 % is not good enough and will not bring remission.
The only food sensitivity tests that are accurate and reliable for detecting the type of food sensitivities associated with MC are available at EnteroLab, in Dallas, TX, and no where else in the world. But avoiding gluten, dairy and soy is a good start, and works for some of us. However, if you are eating low fat butter, then you are obviously not avoiding dairy products, so it's not surprising that you are not able to control your symptoms by diet changes. Simply eating less of a food that causes inflammation will not stop the inflammation. You have to avoid those foods 100 %, 24x7.
You are wasting your time and money trying to control MC by taking advice from the GI department at the Mayo Clinic. The GI department at the Mayo seems to be really out of the loop when it comes to treating MC. For the most part, they don't have a clue, because they refuse to recognize that food sensitivities are the cause of the inflammation that perpetuates MC symptoms in most cases. No other members here have ever received any beneficial MC treatment advice from the Mayo, either, FWIW.
Many members here have tried xifaxin. For some it seems to help for a week or so and then any benefits disappear. Some have even repeated the treatment but it's always a waste of money.
You can download some guidelines for selecting foods for a recovery diet at the link below:
http://www.microscopiccolitisfoundation ... 070516.pdf
Have you read the helpful information in the Guidelines for Recovery section at the link below?
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
We would like to help in any way we can, but controlling this disease is not easy (if it were easy the GI docs could do it), so you have to learn how to treat yourself by reading the information available here and asking questions whenever you can't find any answers you need.
Again, welcome to the group, 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, Gerilyn and welcome!!
Tex is absolutely right, and there are so many posts and stories of people who just like you and me, have MC and many of us also have malabsorption issues. The book in the upper right corner of the page is THE BEST (I just got my copy); it's like having so much of this forum all laid out in an orderly, easy to read and understand format. I can't recommend it enough.
It took me a long time to understand what MC really is, and even now I'm still learning, as unfortunately, so are the doctors (that is, the doctors even willing to take a look outside the box and medical "rules" that constitute their training). It takes awhile to wrap our heads around the fact that something has pulled a trigger (as Tex says) in us and there's no going back; our bodies are now reacting to foods and substances that we may have eaten, enjoyed and taken for granted our whole lives ... and now, it will never be the same, because our bodies, and in MC people, especially our digestive systems/intestines are actually mounting an inflammatory, auto-immune response to different proteins and foods (to simplify, such as gluten, dairy, etc., and there are so many forms of those plus other foods that each of us uniquely will suddenly find ourselves challenged by). Our MC causes our bodies to think these are "bad" for us, and can't tell the difference between trying to fight bad bacteria, a virus or parasite ... or, in most cases, gluten!!
So, as many here say, try to relax, take some breaths. You're not alone. This is a really scary condition to have, and it is totally life-changing. Everyone here gets that completely, and is on your side!! As one with malabsorption issues also (my fat stain tested positive on my first stool test; my 48 hour fecal quantity test was apparently under the number to say I actually had fat malabsorption, so yes, confusing, I get it!!), I'm happy to share with you what I've learned.
I KNOW I have malabsorption. My fingernails were the color of mustard, and I could go on and on. When my 48 hour test was done, I'd already been taking digestive/pancreatin enzymes before eating, so this may have affected that test, something my GI doctor wouldn't listen to. Anyway, I still take the digestive enzymes before eating, and I know they are helping me to have regular stools. HOWEVER, I've also been gluten, dairy and egg free (and mostly soy free) for 5-6 months.
Everyone here will tell you that the healing of your intestines has to be first priority. They can't heal if they're still mounting inflammatory responses to what you are eating, such as (for most of us) any form of gluten and dairy, at the very least. And yes, I'm one of the many who tested "negative" for celiac disease, from endoscopy, colonoscopy and blood labs. Doesn't matter, and the doctors do NOT get this! So, try to de-stress, do some great reading here, ask questions galore, and you'll find out all the foods that you CAN eat, and be able to focus on that, rather than what you can't. When you start to feel better, you won't want to do ANYTHING to mess that up!! And as you eliminate all dairy and gluten, your gut will start to heal, and you'll begin to believe that you can get your life back. And you can!! While healing, as others state, fiber is NOT our friend.
For you with malabsorption, the digestive enzymes may help you; they've certainly helped me. I take Digestzymes and Thorne Dipan 9. You might also find l-Glutamine to help while your intestines are in such distress. I took Budesonide for a total of 8 weeks including taper; that's before I found this board and found that longer is usually better. But, because of the info on this board and the MC book, I've made the dietary changes and continue (as does everyone here) to find out what works best for me, with foods, supplements, vitamins, etc. Who knows if my time on Budesonide helped me at all, as my doctor never presented it as it should be used ... while HEALING!! I've done my healing after being off the budesonide, with the help and amazing support of the people here.
I'm waiting for my EnteroLab results, and am looking forward to more definitive answers as to what triggers MY intestines to flare, and I plan on absolutely taking those results to heart and making any changes needed to keep making things better.
Wishing you all the best ... relax, breathe, feel the love and support here, and take your time to really read the information here and in the MC book. You won't get this from doctors; what you get from doctors won't work for you. Some of us hope to slowly change this in the future!!
~ Holly
PS, my only child is also an adult both physically and mentally disabled. You're not alone, truly!!
Tex is absolutely right, and there are so many posts and stories of people who just like you and me, have MC and many of us also have malabsorption issues. The book in the upper right corner of the page is THE BEST (I just got my copy); it's like having so much of this forum all laid out in an orderly, easy to read and understand format. I can't recommend it enough.
It took me a long time to understand what MC really is, and even now I'm still learning, as unfortunately, so are the doctors (that is, the doctors even willing to take a look outside the box and medical "rules" that constitute their training). It takes awhile to wrap our heads around the fact that something has pulled a trigger (as Tex says) in us and there's no going back; our bodies are now reacting to foods and substances that we may have eaten, enjoyed and taken for granted our whole lives ... and now, it will never be the same, because our bodies, and in MC people, especially our digestive systems/intestines are actually mounting an inflammatory, auto-immune response to different proteins and foods (to simplify, such as gluten, dairy, etc., and there are so many forms of those plus other foods that each of us uniquely will suddenly find ourselves challenged by). Our MC causes our bodies to think these are "bad" for us, and can't tell the difference between trying to fight bad bacteria, a virus or parasite ... or, in most cases, gluten!!
So, as many here say, try to relax, take some breaths. You're not alone. This is a really scary condition to have, and it is totally life-changing. Everyone here gets that completely, and is on your side!! As one with malabsorption issues also (my fat stain tested positive on my first stool test; my 48 hour fecal quantity test was apparently under the number to say I actually had fat malabsorption, so yes, confusing, I get it!!), I'm happy to share with you what I've learned.
I KNOW I have malabsorption. My fingernails were the color of mustard, and I could go on and on. When my 48 hour test was done, I'd already been taking digestive/pancreatin enzymes before eating, so this may have affected that test, something my GI doctor wouldn't listen to. Anyway, I still take the digestive enzymes before eating, and I know they are helping me to have regular stools. HOWEVER, I've also been gluten, dairy and egg free (and mostly soy free) for 5-6 months.
Everyone here will tell you that the healing of your intestines has to be first priority. They can't heal if they're still mounting inflammatory responses to what you are eating, such as (for most of us) any form of gluten and dairy, at the very least. And yes, I'm one of the many who tested "negative" for celiac disease, from endoscopy, colonoscopy and blood labs. Doesn't matter, and the doctors do NOT get this! So, try to de-stress, do some great reading here, ask questions galore, and you'll find out all the foods that you CAN eat, and be able to focus on that, rather than what you can't. When you start to feel better, you won't want to do ANYTHING to mess that up!! And as you eliminate all dairy and gluten, your gut will start to heal, and you'll begin to believe that you can get your life back. And you can!! While healing, as others state, fiber is NOT our friend.
For you with malabsorption, the digestive enzymes may help you; they've certainly helped me. I take Digestzymes and Thorne Dipan 9. You might also find l-Glutamine to help while your intestines are in such distress. I took Budesonide for a total of 8 weeks including taper; that's before I found this board and found that longer is usually better. But, because of the info on this board and the MC book, I've made the dietary changes and continue (as does everyone here) to find out what works best for me, with foods, supplements, vitamins, etc. Who knows if my time on Budesonide helped me at all, as my doctor never presented it as it should be used ... while HEALING!! I've done my healing after being off the budesonide, with the help and amazing support of the people here.
I'm waiting for my EnteroLab results, and am looking forward to more definitive answers as to what triggers MY intestines to flare, and I plan on absolutely taking those results to heart and making any changes needed to keep making things better.
Wishing you all the best ... relax, breathe, feel the love and support here, and take your time to really read the information here and in the MC book. You won't get this from doctors; what you get from doctors won't work for you. Some of us hope to slowly change this in the future!!
~ Holly
PS, my only child is also an adult both physically and mentally disabled. You're not alone, truly!!
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"