Hi there,
I am brand new to this board, and am looking for some guidance in helping me determine if I have MC, or some other issue. I am a 50 yr old female who is in generally good health, except for the past few years I have had periods of multiple loose stools, varying consistency (watery D to regular stool). It was getting inconvenient enough last year (age 49) I did a colonoscopy. The GI doc wrote in my report something I find annoyingly uncertain: “The biopsies were consistent with collagenous colitis, which may be the cause of your diarrhea.”
Well, heck, do I proceed as if I have CC, or look for other causes? I can see that researching MC and implementing diet changes/tests, etc are a lot of work, and I don’t want to do that unless it is necessary. I don't have the other symptoms of MC (see below).
Background if more is needed:
My mom has a complicated host of health issues, which includes hypothyroidism, and a diagnosis of Crohn’s for many years (I saw her GI doc for the colonoscopy). Mysteriously (to me at least), when “our” GI doc retired and a new one took the helm, he dx’d her as having MC instead. I don’t understand how this could be, but there it is. My brother who is 3 years younger is fine.
I’ve eaten pretty healthy all my life, and had regular solid stools once or twice a day. A few years ago that began to change, so slowly I didn’t really realize it. I had a pretty high-fiber diet with oatmeal nearly every morning, fruits and veg, whole grain bread, along with meat and dairy and such. Slowly I began to have more stools, looser stools, and occasional urgency. It was getting inconvenient. Severity came and went, and I chalked it up to irregularity due to antibiotic or antifungal use (there were a few years where I took them for a week or so, a few times a year, after being dx’d with either bacterial vaginosis or yeast infection. Later it turned out those were not likely my real problem, but another obscure and poorly understood thing called vulvodynia).
I noticed D was worse after I ate oatmeal so I began to cut that out. I do NOT have other symptoms of MC others have noted, such as weight loss, bloating/gas, pain (abdominal or joint), great fatigue (a little hard to assess as I have 3 kids and 2 herding dogs that keep me busy), accidents, cramping.
What would you recommend? I am considering the Enterolab testing. I’m not sure if I should find another doc to look at the biopsies to give a more conclusive answer. I have just been 2 weeks on a GF diet and haven’t seen a huge difference, maybe a little better.
Thanks so much for any help you can provide!
MomLady
Do I have CC or something else?
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tommyboywalker
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Hi Momlady and welcome to the forum!
Lots of good folks here, compassion and ideas for best practices which are invaluable.
In my opinion, YES...you should consider it extremely likely that you have CC.
I have a very sharp GI doctor who trained under one of the foremost experts on Microscopic Colitis at the Mayo Clinic in Rochester MN and he told me this after my colonoscopy/biopsy. The biopsies show that you have the "beginning" of what is likely Lymphocytic Microscopic Colitis. In his experience with Colitis, he told me point blank. When the biopsy shows that you "may have" or have the "start of" either kind of Colitis, you should absolutely consider that a diagnosis.
Enterolab is a great idea. It's not perfect but it's the best tool for deciding what you should eliminate from your diet. Enterolab was founded and is managed by Dr. Kenneth Fine, who is a GI doctor who has Microscopic Colitis himself. Enterolab testing isn't cheap, but it's worth every penny in my opinion.
For starters, consider being completely gluten free and dairy free. Gluten is a culprit for almost every one of us and dairy isn't far behind. After that, it can be soy, oats, tuna, corn, rice, chicken, beef, pork, almond, walnut, cashew, potato etc. But a good start for you is to drop gluten and dairy, go with the Enterolab testing and see what that shows. You mention that you have been gluten free for a couple of weeks, stay the course on that. Know that the GI tract heals very, very slowly. It takes months, even years to heal properly for some folks. I would consider eliminating all dairy at this time too as many find that they are sensitive to it along with gluten. Are these diet changes a pain? Of course they are. But they can be absolutely essential to getting this disease under control. My diet is this: Gluten free, dairy free, low fat, low sugar, small meals. Everybody has to find what diet works for them. It can sometime take a while.
My Enterolab showed a sensitivity to gluten and dairy and I dropped both of those foods. While that helped, it wasn't quite enough to get me over the hump to a better quality of life so my GI doctor prescribed Budesonide (a GI steroid) which gave me results in 10 days and I was in complete remission in a month. Then I went on a VERY slow taper which led to a 2 year remission. Over the winter, I was diagnosed with Malignant Melanoma Cancer and I feel the stress contributed to a relapse, so I am back on Budesonide which is again helping greatly and hopefully leading me into another long term remission. Budesonide is not for everyone and many can deal with this with diet alone but know that you have other drugs in the tool box including Budesonide and there are some others.
So there IS a great deal of hope for you! You really can have a decent quality of life. But know this. DIET is absolutely, positively the cornerstone. Please buy Tex's book on Microscopic Colitis. It's called "Microscopic Colitis, revised edition" by Wayne Persky. You will learn SO much. Tex has helped me and so many others here. His information is spot on, something I can't say about many Gastroenteroligists.
Also, do yourself a favor and peruse all parts of this forum. You will learn so much.
All the best to you, please keep us posted!
Lots of good folks here, compassion and ideas for best practices which are invaluable.
In my opinion, YES...you should consider it extremely likely that you have CC.
I have a very sharp GI doctor who trained under one of the foremost experts on Microscopic Colitis at the Mayo Clinic in Rochester MN and he told me this after my colonoscopy/biopsy. The biopsies show that you have the "beginning" of what is likely Lymphocytic Microscopic Colitis. In his experience with Colitis, he told me point blank. When the biopsy shows that you "may have" or have the "start of" either kind of Colitis, you should absolutely consider that a diagnosis.
Enterolab is a great idea. It's not perfect but it's the best tool for deciding what you should eliminate from your diet. Enterolab was founded and is managed by Dr. Kenneth Fine, who is a GI doctor who has Microscopic Colitis himself. Enterolab testing isn't cheap, but it's worth every penny in my opinion.
For starters, consider being completely gluten free and dairy free. Gluten is a culprit for almost every one of us and dairy isn't far behind. After that, it can be soy, oats, tuna, corn, rice, chicken, beef, pork, almond, walnut, cashew, potato etc. But a good start for you is to drop gluten and dairy, go with the Enterolab testing and see what that shows. You mention that you have been gluten free for a couple of weeks, stay the course on that. Know that the GI tract heals very, very slowly. It takes months, even years to heal properly for some folks. I would consider eliminating all dairy at this time too as many find that they are sensitive to it along with gluten. Are these diet changes a pain? Of course they are. But they can be absolutely essential to getting this disease under control. My diet is this: Gluten free, dairy free, low fat, low sugar, small meals. Everybody has to find what diet works for them. It can sometime take a while.
My Enterolab showed a sensitivity to gluten and dairy and I dropped both of those foods. While that helped, it wasn't quite enough to get me over the hump to a better quality of life so my GI doctor prescribed Budesonide (a GI steroid) which gave me results in 10 days and I was in complete remission in a month. Then I went on a VERY slow taper which led to a 2 year remission. Over the winter, I was diagnosed with Malignant Melanoma Cancer and I feel the stress contributed to a relapse, so I am back on Budesonide which is again helping greatly and hopefully leading me into another long term remission. Budesonide is not for everyone and many can deal with this with diet alone but know that you have other drugs in the tool box including Budesonide and there are some others.
So there IS a great deal of hope for you! You really can have a decent quality of life. But know this. DIET is absolutely, positively the cornerstone. Please buy Tex's book on Microscopic Colitis. It's called "Microscopic Colitis, revised edition" by Wayne Persky. You will learn SO much. Tex has helped me and so many others here. His information is spot on, something I can't say about many Gastroenteroligists.
Also, do yourself a favor and peruse all parts of this forum. You will learn so much.
All the best to you, please keep us posted!
Hi, and welcome to the group,
tommyboywalker is quite correct, of course.
Again, welcome aboard, and please feel free to ask anything.
Tex
tommyboywalker is quite correct, of course.
is doctorspeak for "you have collagenous colitis". It means that your biopsies meet the laboratory criteria for a diagnosis of collagenous colitis. I don't understand why your GI doc didn't make that clear by translating it into layman's terms for you, but at any rate, there's no doubt about it — you have collagenous collitis (CC). Doctors often miss CC by overlooking it, but they never misdiagnose it.biopsies were consistent with collagenous colitis
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.
Thanks Tex and tommyboywalker for taking the time to reply. I have the book and will be reading it in detail soon, just skimmed a bit thus far. I looked at the cover of the book and thought, "Gee, what's that guy thinking as he stares out at the mountains? Probably: 'No gluten? No dairy? No coffee? Might as well jump!' " (ha). With grandparents/great grandparents who were bakers and dairy farmers, I find it terribly ironic I might have to go GF or DF. So it goes...