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New here. I was diagnosed last month with collagenous & lymphocatic colitis. Had watery diahhrea for the whole month of August & half of Sept. I also have had ms for 11 years and am a 4 year b/c survivor. My primary refuses to accept this dx., saying it's stress related. Anyone have this difficulty with their doctors?
Mary Caridi
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karenswans
- Adélie Penguin
- Posts: 104
- Joined: Sat Sep 03, 2011 7:12 am
Hi, and welcome! I'm recently diagnosed too. Were you diagnosed via a biopsy during a colonoscopy? If so, I don't see how your primary care physician can dismiss that. 
I do think my MC has a stress component. That is, I know stress can be a trigger for me, but it isn't the only trigger (I'm learning I have several food sensitivities), and I don't tihnk stress caused this illness. Anyway, what is your primary physician's point? Even if it were stress-related, you would still need to figure out how to mitigate your symptoms, either through food or meds. It's infuriating that your doctor is so dismissive.
I'm glad you found this place. You can learn a lot here that will help you.
I do think my MC has a stress component. That is, I know stress can be a trigger for me, but it isn't the only trigger (I'm learning I have several food sensitivities), and I don't tihnk stress caused this illness. Anyway, what is your primary physician's point? Even if it were stress-related, you would still need to figure out how to mitigate your symptoms, either through food or meds. It's infuriating that your doctor is so dismissive.
I'm glad you found this place. You can learn a lot here that will help you.
Hi Mary,
Welcome to our internet family. I'm sorry to hear that you have other health issues, also. Autoimmune diseases seem to come in groups, unfortunately, and many of us have two or more.
Yes, unfortunately, dealing with doctors who can't seem to get the facts straight, is a major problem for many of us. In general, I think that PCPs tend to do better than GI specialists, because most PCPs don't think that they know everything that there is to know about disease and treating it. GI docs consider themselves to be experts, whether they are or not. We've had quite a few GI docs who just ignored the pathology report, and told their patients one of the following:
1. There's nothing wrong with you
2. It's just IBS
3. It's nothing to worry about - it'll go away in a few months.
And when it doesn't go away, (which is certainly the case most of the time), some gastroenterologists have even had the audacity to advise members here to:
Just learn to live with it.
So it's not surprising that PCPs can be confused about the disease, when so many GI specialists don't understand it at all. Doctors who know so little about the disease, certainly shouldn't be treating someone who has it. As Karen mentioned, stress can certainly be a part of the problem, and it can make the symptoms worse, but it's not just a stress issue, because after the stress is gone, you will still have MC.
Are you following any type of treatment program? Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry to hear that you have other health issues, also. Autoimmune diseases seem to come in groups, unfortunately, and many of us have two or more.
Yes, unfortunately, dealing with doctors who can't seem to get the facts straight, is a major problem for many of us. In general, I think that PCPs tend to do better than GI specialists, because most PCPs don't think that they know everything that there is to know about disease and treating it. GI docs consider themselves to be experts, whether they are or not. We've had quite a few GI docs who just ignored the pathology report, and told their patients one of the following:
1. There's nothing wrong with you
2. It's just IBS
3. It's nothing to worry about - it'll go away in a few months.
And when it doesn't go away, (which is certainly the case most of the time), some gastroenterologists have even had the audacity to advise members here to:
Just learn to live with it.
So it's not surprising that PCPs can be confused about the disease, when so many GI specialists don't understand it at all. Doctors who know so little about the disease, certainly shouldn't be treating someone who has it. As Karen mentioned, stress can certainly be a part of the problem, and it can make the symptoms worse, but it's not just a stress issue, because after the stress is gone, you will still have MC.
Are you following any type of treatment program? Again, welcome aboard, and please feel free to ask anything.
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.
WELCOME, MARY!! 
I would add to Tex's list that some here have been told by their doctors to see a psychiatrist.
We can assure you that it's a real problem, it's not in your head, and removing stress will probably not make your MC go away.
Please read as much as you can on this web board. We have many years of experience dealing with MC, with and without our doctors. Most of us have had to change our diet in order to manage our MC.
We are here to help you; please don't hesitate to ask any questions.
Gloria
I would add to Tex's list that some here have been told by their doctors to see a psychiatrist.
We can assure you that it's a real problem, it's not in your head, and removing stress will probably not make your MC go away.
Please read as much as you can on this web board. We have many years of experience dealing with MC, with and without our doctors. Most of us have had to change our diet in order to manage our MC.
We are here to help you; please don't hesitate to ask any questions.
Gloria
You never know what you can do until you have to do it.
Welcome... and I'm sorry your doctor is adding to your stress.
This condition does respond to stress, but it also is pretty darned stressful. You will turn out to be the expert in MC - for better or worse - at least for your own particular version. Many of us are working toward remission, or maintaining stable remission, via diet and medications, or by diet alone. No single medication works equally well for everyone, but virtually all of us find that eliminating gluten is an important step, and almost all of us react to dairy as well. It takes some healing time to see the results of dietary change, which is frustrating and can make it difficult to stay motivated. Medication can be helpful - I used Pepto Bismol in my first few weeks, and it did help me, but not everyone can tolerate it.
A lot of us have done food-sensitivity testing via Enterolab (I knew I was sensitive to gluten, but was still surprised that my test result was so high). Some people believe the GF diet can be helpful for MS as well, but I don't know how thoroughly that had been studied. In any case, the good news is that the seeming rigors of diet change can have multiple benefits for us, including relief from symptoms that seem totally unrelated to MC.
I hope you're feeling better fast,
Sara
This condition does respond to stress, but it also is pretty darned stressful. You will turn out to be the expert in MC - for better or worse - at least for your own particular version. Many of us are working toward remission, or maintaining stable remission, via diet and medications, or by diet alone. No single medication works equally well for everyone, but virtually all of us find that eliminating gluten is an important step, and almost all of us react to dairy as well. It takes some healing time to see the results of dietary change, which is frustrating and can make it difficult to stay motivated. Medication can be helpful - I used Pepto Bismol in my first few weeks, and it did help me, but not everyone can tolerate it.
A lot of us have done food-sensitivity testing via Enterolab (I knew I was sensitive to gluten, but was still surprised that my test result was so high). Some people believe the GF diet can be helpful for MS as well, but I don't know how thoroughly that had been studied. In any case, the good news is that the seeming rigors of diet change can have multiple benefits for us, including relief from symptoms that seem totally unrelated to MC.
I hope you're feeling better fast,
Sara
Mary,
Some people develop MC as a result of a medication, but most of us are sensitive to gluten. We may eat it without apparent problems for years, but several things can push it over the edge - a stomach bug (often encountered while traveling), or a vaccine or other illness, for example. I believe also that the reason why it was thought to occur primarily in middle-aged women is because the longer we eat gluten, the more likely we are to get pushed over the edge to react negatively. So - though we have many younger members, including a little girl who just started kindergarten, but a few decades of eating gluten can take quite a toll, when there is a genetic tendency toward celiac or non-celiac gluten sensitivity.
I guess I don't agree with your doctor. I do not believe that stress alone can cause MC, in the absence of some other trigger, but it can certainly be a factor in all other diseases - how can stress affect the immune system and just about everything else, but not the gut?
I was afraid, too. For me, diet has made all the difference. I also started out using Pepto Bismol, which helped, but it could not have turned things around if I had continued my previous way of eating.
You can get your life back, and we can help. Are you considering Enterolab testing, to figure out some of the foods that may be a factor in your MC? As with most folks here, I am now gluten-free and dairy-free. I also avoid soy and most legumes, and eggs (sadly!), and find I feel best when I eat no grains at all. That has been a big change, but feeling great is worth it.
I hope this helps. I did have a period of remission, which is pretty unusual. But when my MC came back, it came back much worse. I wish I had known about the gluten connection originally.
--Sara
Some people develop MC as a result of a medication, but most of us are sensitive to gluten. We may eat it without apparent problems for years, but several things can push it over the edge - a stomach bug (often encountered while traveling), or a vaccine or other illness, for example. I believe also that the reason why it was thought to occur primarily in middle-aged women is because the longer we eat gluten, the more likely we are to get pushed over the edge to react negatively. So - though we have many younger members, including a little girl who just started kindergarten, but a few decades of eating gluten can take quite a toll, when there is a genetic tendency toward celiac or non-celiac gluten sensitivity.
I guess I don't agree with your doctor. I do not believe that stress alone can cause MC, in the absence of some other trigger, but it can certainly be a factor in all other diseases - how can stress affect the immune system and just about everything else, but not the gut?
I was afraid, too. For me, diet has made all the difference. I also started out using Pepto Bismol, which helped, but it could not have turned things around if I had continued my previous way of eating.
You can get your life back, and we can help. Are you considering Enterolab testing, to figure out some of the foods that may be a factor in your MC? As with most folks here, I am now gluten-free and dairy-free. I also avoid soy and most legumes, and eggs (sadly!), and find I feel best when I eat no grains at all. That has been a big change, but feeling great is worth it.
I hope this helps. I did have a period of remission, which is pretty unusual. But when my MC came back, it came back much worse. I wish I had known about the gluten connection originally.
--Sara
Mary - I have no scientific evidence to back this up, but I think there is a definite connection between autoimmune diseases, i.e. type 1 diabetes and hashimoto's thyroiditis, celiac disease (and I believe also gluten sensitivity). You must have the gene that predisposes you to these diseases, but stress can definitely trigger the immune system to go haywire. My mother was diagnosed with adult onset type 1 diabetes a couple of months after my father died. I was diagnosed with the same thing about a month before I got married. I was definitely stressed and my MC showed up a couple of weeks after my mother died. I have had D on and off since I was 25. It was diagnosed as IBS. Every time the I could relate the D to some kind of stress in my life. Every time I had a bout of D it was progressively worse and lasted for a longer time. It wasn't until I was diagnosed with MC, found this website, and had Enterolab testing, that I realized I have celiac. It has never shown up in blood tests or biopsy, but I have the gene and going gluten free dramatically changed my life. I have realized that gluten has been the cause of the myriad of illnesses I have battled over the years. One of the biggies is fibromyalgia. Since going gluten, dairy, soy and egg free, I am completely free of the pain, exhaustion and the brain fog that my dr. said was fibromyalgia.
Sorry for the rant....the main point I wanted to make is that stress definitely can trigger MC, but is not the cause of it.
Hugs,
Sorry for the rant....the main point I wanted to make is that stress definitely can trigger MC, but is not the cause of it.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
It's no wonder you're confused - your GI doc is confused. Gluten, (and possibly a few other foods in your diet), generates the inflammation that causes MC. Stress affects the gut bacteria, which tends to make the inflammation worse. Your doctor doesn't understand this disease at all.Mary wrote:My gi said it's not diet or stress related! I'm SOOO confused?
The odds of a spontaneous remission are very slim. Most of us here who are in remission, are in remission because we have eliminated from our diet, all the foods that we are sensitive to, or we're taking a medication, (which will probably have to be taken for the rest of our life), or we're using a combination of diet changes and a low dose of a medication to control our symptoms. MC can be controlled, but it can't be cured.Mary wrote:Question, does this go in remission? I'm liking it to my ms, just waiting for the other shoe to drop. Starting to get real depressed. Only 53 & have to wear diapers. Not any way the life I planned. So much I want to do, but am afraid.
You can eliminate the need for diapers if you change your diet. Start by cutting out all gluten and dairy products. If that doesn't do the trick, then cut out soy, 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.
Mary,
We're glad you found us. I was diagnosed with Microscopic Collagenous Colitis on June 13th One of the best things for me has been finding this website. The support group has become like an extended family to me. I hope you will take time to read through the materials on the site. (I'm still not done reading everything)
I agree with my peers here. Your doctor is clearly uninformed and confused himself.
I have used Entocort, but am off it for now. It helped me quickly get my diarrhea under control. I'd encourage you to consider it, even for a short while, if it won't conflict with your M.S. meds.
More than medication, giving up gluten (wheat, barley & rye) has really helped me a LOT! Now, if I am accidentally glutened, I get a really smashing headache and end up in bed for at least 36 hours. I've also given up dairy and oats. (Oats have a protein called avenin that is like gluten in wheat. I get headaches when I eat oats now. It was a huge loss for me as I loved my steel cut oats).
Good luck.
Sharaine
We're glad you found us. I was diagnosed with Microscopic Collagenous Colitis on June 13th One of the best things for me has been finding this website. The support group has become like an extended family to me. I hope you will take time to read through the materials on the site. (I'm still not done reading everything)I agree with my peers here. Your doctor is clearly uninformed and confused himself.
I have used Entocort, but am off it for now. It helped me quickly get my diarrhea under control. I'd encourage you to consider it, even for a short while, if it won't conflict with your M.S. meds.
More than medication, giving up gluten (wheat, barley & rye) has really helped me a LOT! Now, if I am accidentally glutened, I get a really smashing headache and end up in bed for at least 36 hours. I've also given up dairy and oats. (Oats have a protein called avenin that is like gluten in wheat. I get headaches when I eat oats now. It was a huge loss for me as I loved my steel cut oats).
Good luck.
Sharaine
That's typical of MC. Most of us have that problem, at least part of the time, until we get our symptoms under control. I dealt with that for several years, until I figured out that I needed to change my diet.Mary wrote:but I have no sensation when I'm going to poop. Sometimes I feel like its gas, but its not!
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.