What can I say, I am 33 years old and miserable. I just found out in March that I have Mild MC. If this is mild, I would absolutely hate to see what normal MC is like. I feel like something is rotting inside of me every day for about the last 4 years.
My GI told me to eat soup (with over cooked meats and veggies), no fresh fruits or veggies and no whole grains or fiber, he also told me no dairy and I am negative for Celiac disease! But I most likely have IBS with MC. And he keeps sending me for more tests because he doesn't understand why the meds he has given me make me worse or aren't offering any relief.
Last week I did the barium test of the small bowel then I did the Hida Scan of my liver and gallbladder???? UGH I am tired of being a test dummy, but I guess whatever it takes to get fixed. So glad I have good insurance.
I started with Asacol in March. That was horrible. I had ten times worse D as i ever had and it was painful passing the casings of the pills. So then he started me on sulfur pills, 3 times a day. He called sulfur an "Ancient cure" for this disease. Its slow working, but its supposed to kill the MC down the line. He also put me on Detrol for IBS which is supposed to limit the spasms. Been taking those 3 times a day for over a month now and havent noticed a difference. This past friday, i just started Entocort. I read on a link from this site that Many people respond well to that medicine. I sure hope so, it is very expensive....
Today I discovered this website/supportive group for MC. I am so thankful that I am not alone in the battle...even though I wish none of us had to deal with this.
Where do I go from here, what do I do??? I am supposed to do a stool sample this week. Maybe they will find a gluten intolerance? That would be helpful then I can go GF, DF, SF and whatever else FOOD FREE i need to be!
I just want to enjoy my life. I'm so irritable all the time and just plain cranky because of this pain and nasty feeling inside me all the time. This Gut Rot is horrible.
Any advise anyone can offer, I would be so appreciative.
If only I could live on Chicken Soup!
Moderators: Rosie, JFR, Dee, xet, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hi Chrystal,
Welcome to our internet family. Most GI docs make the foolish mistake of telling certain patients that they have a "mild" case of MC. They simply don't understand the disease. Your doctor is basing that claim on the fact that your intraepithelial lymphocyte count was minimal for a diagnosis of MC when the pathologist analyzed your biopsy slides. Unfortunately, there is nothing to substantiate that misguided claim. In fact, research shows that the lymphocyte count is totally unrelated to the severity of clinical symptoms, with LC. Likewise, for CC patients, the actual thickness of the collagen bands that are used as a basis for the diagnosis of CC has absolutely no correlation with the severity of clinical symptoms. And yet, otherwise intelligent GI specialists assume that only a moderate thickening of those collagen bands indicates a "mild" case of CC. It's simply not true, and it demonstrates why doctors should never make unfounded assumptions.
Your doctor seems to be much better than most at understanding how to treat this disease, because he at least recognizes the role that food sensitivities play in the disease. But unfortunately he is making a critical mistake in your treatment program, because of another inappropriate assumption. Your doctor is incorrectly assuming that a negative celiac test result rules out gluten sensitivity. That is a very common medical mistake, and it's a critical one, because it results in undue suffering for many thousands of patients, and it drives GI specialists up the wall when they can't understand why their treatments are not working. They are not working because of a foolish assumption, based on the extremely poor sensitivity of the classic celiac blood tests.
The truth is that those blood tests are only capable of detecting fully-developed celiac disease. The tests will not detect earlier stages of the disease, nor will they detect non-celiac gluten sensitivity, which is the type of gluten sensitivity usually associated with MC. In fact, research shows that those tests are so insensitive that unless enough small intestinal damage has accumulated to cause at least a Marsh 3 stage of damage (villus flattening), the test result will virtually always be negative. That's why the average length of time between the onset of symptoms and an actual official medical diagnosis of celiac disease is still 9.7 years in this country. That's absolutely ridiculous, and yet doctors continue to pretend that those tests are the "gold standard" for diagnosing gluten sensitivity.
Many people react adversely to Asacol (and the other mesalamine-based anti-inflamatories), because they are a derivative of salicylic acid, thus making them closely related to NSAIDs, a known trigger for MC for many people. I am very surprised that you are able to tolerate sulfasalazine, if you could not tolerate mesalamine (mesalazine), because sulfasalazine is a a pro-drug, and when the body breaks it down, one of the resulting moieties is mesalazine (mesalamine). The other moiety is a rather toxic compound that can be helpful for treating arthritis for some people, but which commonly causes adverse reactions for many/most people who do not have arthritis.
MC often causes inflammation of both the gallbladder and the pancreas (among many other organs), but research shows that treating those satellite issues is pointless and often counterproductive, because they will virtually always resolve after the MC symptoms are resolved.
How can we be so sure that avoiding food sensitivities is the key to controlling this disease? Because research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and that opens the door to other food sensitivities, because of the development of increased intestinal permeability (leaky gut), and as a result, the immune system tends to become hyperactive.
Besides, it's hard to argue with success, and compared with the poor success rate that most GI specialists have racked up as they attempt to treat this disease, our success rate on this board is extremely high, and many of us choose to do it by means of diet changes alone, without any drugs. The bottom line is that drugs can mask symptoms, but diet changes are necessary in order to prevent the inflammation from developing in the first place, and properly treating gluten sensitivity is the cornerstone of that treatment program for almost all of us.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Most GI docs make the foolish mistake of telling certain patients that they have a "mild" case of MC. They simply don't understand the disease. Your doctor is basing that claim on the fact that your intraepithelial lymphocyte count was minimal for a diagnosis of MC when the pathologist analyzed your biopsy slides. Unfortunately, there is nothing to substantiate that misguided claim. In fact, research shows that the lymphocyte count is totally unrelated to the severity of clinical symptoms, with LC. Likewise, for CC patients, the actual thickness of the collagen bands that are used as a basis for the diagnosis of CC has absolutely no correlation with the severity of clinical symptoms. And yet, otherwise intelligent GI specialists assume that only a moderate thickening of those collagen bands indicates a "mild" case of CC. It's simply not true, and it demonstrates why doctors should never make unfounded assumptions.
Your doctor seems to be much better than most at understanding how to treat this disease, because he at least recognizes the role that food sensitivities play in the disease. But unfortunately he is making a critical mistake in your treatment program, because of another inappropriate assumption. Your doctor is incorrectly assuming that a negative celiac test result rules out gluten sensitivity. That is a very common medical mistake, and it's a critical one, because it results in undue suffering for many thousands of patients, and it drives GI specialists up the wall when they can't understand why their treatments are not working. They are not working because of a foolish assumption, based on the extremely poor sensitivity of the classic celiac blood tests.
The truth is that those blood tests are only capable of detecting fully-developed celiac disease. The tests will not detect earlier stages of the disease, nor will they detect non-celiac gluten sensitivity, which is the type of gluten sensitivity usually associated with MC. In fact, research shows that those tests are so insensitive that unless enough small intestinal damage has accumulated to cause at least a Marsh 3 stage of damage (villus flattening), the test result will virtually always be negative. That's why the average length of time between the onset of symptoms and an actual official medical diagnosis of celiac disease is still 9.7 years in this country. That's absolutely ridiculous, and yet doctors continue to pretend that those tests are the "gold standard" for diagnosing gluten sensitivity.
Many people react adversely to Asacol (and the other mesalamine-based anti-inflamatories), because they are a derivative of salicylic acid, thus making them closely related to NSAIDs, a known trigger for MC for many people. I am very surprised that you are able to tolerate sulfasalazine, if you could not tolerate mesalamine (mesalazine), because sulfasalazine is a a pro-drug, and when the body breaks it down, one of the resulting moieties is mesalazine (mesalamine). The other moiety is a rather toxic compound that can be helpful for treating arthritis for some people, but which commonly causes adverse reactions for many/most people who do not have arthritis.
MC often causes inflammation of both the gallbladder and the pancreas (among many other organs), but research shows that treating those satellite issues is pointless and often counterproductive, because they will virtually always resolve after the MC symptoms are resolved.
If you want to get your life back, you need to cut gluten, dairy, and soy out of your diet (including trace amounts found in vitamin supplements, cosmetics, etc.), until you are in remission, and then you can fine-tune your diet after you are in remission. If you can't convince yourself to exclude all those foods from your diet without medical validation, then order a test kit from EnteroLab, in Dallas, TX. EnteroLab offers the only tests that can accurately and reliably detect the type of food sensitivities that we have with this disease.Chrystal wrote:Where do I go from here, what do I do???
How can we be so sure that avoiding food sensitivities is the key to controlling this disease? Because research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and that opens the door to other food sensitivities, because of the development of increased intestinal permeability (leaky gut), and as a result, the immune system tends to become hyperactive.
Besides, it's hard to argue with success, and compared with the poor success rate that most GI specialists have racked up as they attempt to treat this disease, our success rate on this board is extremely high, and many of us choose to do it by means of diet changes alone, without any drugs. The bottom line is that drugs can mask symptoms, but diet changes are necessary in order to prevent the inflammation from developing in the first place, and properly treating gluten sensitivity is the cornerstone of that treatment program for almost all of us.
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.
This is such great information. I did talk to my mom about this yesterday, that I need to go GF, DF and SF. I need to know how to start. It sounds so hard to do, but I am willing to do anything if I can start to feel better.
Here is another question, my GI said no fresh fruits or veggies. So, along with GF, DF and SF do I have to go Veggie and Fruit free as well? What is left to eat after that besides chicken broth?
I am interested in what you said about the sulfer meds I am taking. I don't seem to be bothered by that at all. Of course, how would I know if I am bothered by it anyways since im always in a state of discomfort and pain?
My ultimate goal is to get off all these meds. No one ever wants to take medicine the rest of their life, well not me anyways.
I definitely want to order that kit from EnteroLab. That sounds great! If i can get a firm understanding of what sensitivities I have, that should really help me.
Thank you so much for all your information. I really feel blessed to have found this group.
Here is another question, my GI said no fresh fruits or veggies. So, along with GF, DF and SF do I have to go Veggie and Fruit free as well? What is left to eat after that besides chicken broth?
I am interested in what you said about the sulfer meds I am taking. I don't seem to be bothered by that at all. Of course, how would I know if I am bothered by it anyways since im always in a state of discomfort and pain?
My ultimate goal is to get off all these meds. No one ever wants to take medicine the rest of their life, well not me anyways.
I definitely want to order that kit from EnteroLab. That sounds great! If i can get a firm understanding of what sensitivities I have, that should really help me.
Thank you so much for all your information. I really feel blessed to have found this group.
Chrystal
Based on our experiences, I'm not sure that undercooked meet is a problem (except of course for the possible risk of bacterial infection, which no one needs, especially on top of MC), but it is probably easier to digest if it is thoroughly cooked. And any vegetables that are eaten should be peeled and overcooked. Removing the peel removes most of the fiber, and overcooking makes them easier to digest. Don't worry about losing nutrients because of overcooking, because until we get our symptoms under control, food just goes right through us anyway, and takes most of the nutrients with it. A balanced diet is a moot point until we can get our digestive system settled down and working correctly again.
Fruits are mostly contraindicated for several reasons. The first problem is the fiber, and the second is the relatively high fructose content. Fructose is less likely to be properly digested when our digestive process is compromised, causing undigested fructose to end up in the colon, where it is fermented by bacteria, resulting in gas, bloating, cramps, etc. In addition, fruits tend to contain significant amounts of sugar alcohols (sorbitol, manitol, malitol, etc.), and since sugar alcohols are mostly indigestible, this adds to the fermentation problem in the colon.
A primary digestive issue with this disease is compromised enzyme production. The inflammation associated with MC adversely affects virtually all of the organs where digestive enzymes are produced, and by interfering with enzyme production, this initiates a chain reaction that leads to compromised digestion all down the line. Thus the reason for eating foods in a form where they are as easy to digest as is practically possible.
That said, all fruits are not necessarily verboten for all of us. Most of us can tolerate raw bananas, for example. The most problematic fruits are citrus fruits (including tomatoes). Some of us find that as long as we don't overdo them, canned pears, or peaches, for example, qualify as safe foods.
The key to expediting our recovery seems to be cooking whole (unprocessed) foods, from scratch, using minimal (and known safe) ingredients. The more so-call gluten free processed foods we try to incorporate into our diet, the higher thr risk we have of stalling our recovery. Except for a few of us who are sensitive to potatoes or corn, plain old Lay's potato chips are safe, and so are Fritos, for example, because they have a minimal number of (safe) ingredients. In general, the longer the ingredient list of any commercial product, the higher the risk of a reaction, because cross-contamination of ingredients is a major problem in the processed food industry.
Some of us even have to utilize rather exotic meat sources, because of sensitivity to certain meats. Some types of fish are off limits for some members here, but this is strictly an individual issue. It probably would be a good idea to avoid raw fish until you have been in remission for a while, because of the digestibility issue. When I was recovering, for example, I found that beef was more difficult for me to digest, and it caused symptoms. I found pork and poultry to be much easier to digest, so I mostly stuck with them. These days I can eat virtually any type of meat I want, cooked any way that I like (but I still prefer pork).
Once you have been in stable remission for a while, then you should be able to slowly add many foods back into your diet, including raw fruits and vegetables, and other sources of fiber. Just be aware that if an EnteroLab test shows that you are sensitive to gluten, casein, or soy, those sensitivities will almost certainly exist for the rest of your life. The others may fade with time. For example, many members who are sensitive to eggs, find that after they are in remission, they can eat eggs in baked goods, as long as they don't overdo it. A yeast sensitivity virtually always disappears after we reach remission, so it is the least persistent food sensitivity.
Here's a link to the EnteroLab tests that most of us find to be very helpful:
https://www.enterolab.com/StaticPages/TestInfo.aspx
Tex
Fruits are mostly contraindicated for several reasons. The first problem is the fiber, and the second is the relatively high fructose content. Fructose is less likely to be properly digested when our digestive process is compromised, causing undigested fructose to end up in the colon, where it is fermented by bacteria, resulting in gas, bloating, cramps, etc. In addition, fruits tend to contain significant amounts of sugar alcohols (sorbitol, manitol, malitol, etc.), and since sugar alcohols are mostly indigestible, this adds to the fermentation problem in the colon.
A primary digestive issue with this disease is compromised enzyme production. The inflammation associated with MC adversely affects virtually all of the organs where digestive enzymes are produced, and by interfering with enzyme production, this initiates a chain reaction that leads to compromised digestion all down the line. Thus the reason for eating foods in a form where they are as easy to digest as is practically possible.
That said, all fruits are not necessarily verboten for all of us. Most of us can tolerate raw bananas, for example. The most problematic fruits are citrus fruits (including tomatoes). Some of us find that as long as we don't overdo them, canned pears, or peaches, for example, qualify as safe foods.
The key to expediting our recovery seems to be cooking whole (unprocessed) foods, from scratch, using minimal (and known safe) ingredients. The more so-call gluten free processed foods we try to incorporate into our diet, the higher thr risk we have of stalling our recovery. Except for a few of us who are sensitive to potatoes or corn, plain old Lay's potato chips are safe, and so are Fritos, for example, because they have a minimal number of (safe) ingredients. In general, the longer the ingredient list of any commercial product, the higher the risk of a reaction, because cross-contamination of ingredients is a major problem in the processed food industry.
Some of us even have to utilize rather exotic meat sources, because of sensitivity to certain meats. Some types of fish are off limits for some members here, but this is strictly an individual issue. It probably would be a good idea to avoid raw fish until you have been in remission for a while, because of the digestibility issue. When I was recovering, for example, I found that beef was more difficult for me to digest, and it caused symptoms. I found pork and poultry to be much easier to digest, so I mostly stuck with them. These days I can eat virtually any type of meat I want, cooked any way that I like (but I still prefer pork).
Once you have been in stable remission for a while, then you should be able to slowly add many foods back into your diet, including raw fruits and vegetables, and other sources of fiber. Just be aware that if an EnteroLab test shows that you are sensitive to gluten, casein, or soy, those sensitivities will almost certainly exist for the rest of your life. The others may fade with time. For example, many members who are sensitive to eggs, find that after they are in remission, they can eat eggs in baked goods, as long as they don't overdo it. A yeast sensitivity virtually always disappears after we reach remission, so it is the least persistent food sensitivity.
Here's a link to the EnteroLab tests that most of us find to be very helpful:
https://www.enterolab.com/StaticPages/TestInfo.aspx
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.
Thank you so much again. I have taken lots of notes. Im going to try this GF, SF and DF diet...and already started today. I waited til i had a BM this morning and didnt eat anything until after 10 am. I went to the store and bought some Jennie O Turkey patties, plain potato chips, rice cakes and almond milk and some rice chex just for me to eat the next couple days at work. I have been waiting for some pain, and nothing yet. So I just really gotta buckle down and make a grocery list of everything I can eat and go shopping and start from scratch. I really appreciate everything. You seem very knowledgeable.
If I have more questions, I will definitely let you know.
If I have more questions, I will definitely let you know.
Chrystal
Helpful book
to you and other newbies I may have missed.Cecelia's Marketplace Gluten/Casein/Soy Free Grocery Shopping Guide
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi, There are many items g-f items at the supermarket. Hormel makes many deli meats that are gluten and nitriate free. Look for the gluten free on the box. Udi's makes many g-f bakery products, search on the internet under "Udi's" for there product listing. They are available in most supermarkets. Perdue makes short cut chicken, pre cooked and great for salads and sandwiches. General Mills produces the some of the Chex cereals g-f. Always looked for gluten free on the box. Kelloggs rice cereal now offers a g-f product. Compared to fifteen years ago there is plenty of g-f products available and the list is growing daily. Jon
Welcome!
I can tell you that I discovered sensitivity to chicken and rice (among MANY other things) when I did the enterolab tests. I was basically eating chicken and rice, and could not figure out what was causing ongoing D.
Also, I basically stripped my kitchen, gave/threw away TONS of stuff, bought new kitchen implements, especially plastic stuff like cutting boards.
My kitchen is now totally EVERYTHING free.
I spent a lot of time and money trying to make all sorts of everything free foods. I bought every flour known to man and tried making breads, cookies and all sorts of other things. A lot of members manage to make things that they can eat. I found it sort of thankless. I never seemed to get to much I really liked, and was wearing myself out.
I still spend too long in the kitchen because everything I eat is made from scratch, but I have simplified my diet so that I only make a few things.
I make stocks from grass, or pasture fed animals to flavor foods, and freeze them in concentrated form in ice cube trays so that I always have some ready.
Since I have also been diagnosed with osteoporosis, AND it's been chilly, I have been drinking a lot of these broths, and making them into soups. The last was French onion, but without bread or cheese. Still delicious.
When I am having a lot of cramps I avoid most veggies, but when I feel better I make veggie juice from "safe" veggies. If I am feeling creative I use the pulp to make muffins (there are recipes for paleo muffins, which are delicious, in Dee's Kitchen).
I don't eat fruits in their whole, raw forms, but make smoothies in my blendtec blender (I have acquired all sorts of equipment over time so that I can produce what I need as efficiently as I can).
I hope you find your sensitivities ASAP, and can go into remission!
I can tell you that I discovered sensitivity to chicken and rice (among MANY other things) when I did the enterolab tests. I was basically eating chicken and rice, and could not figure out what was causing ongoing D.
Also, I basically stripped my kitchen, gave/threw away TONS of stuff, bought new kitchen implements, especially plastic stuff like cutting boards.
My kitchen is now totally EVERYTHING free.
I spent a lot of time and money trying to make all sorts of everything free foods. I bought every flour known to man and tried making breads, cookies and all sorts of other things. A lot of members manage to make things that they can eat. I found it sort of thankless. I never seemed to get to much I really liked, and was wearing myself out.
I still spend too long in the kitchen because everything I eat is made from scratch, but I have simplified my diet so that I only make a few things.
I make stocks from grass, or pasture fed animals to flavor foods, and freeze them in concentrated form in ice cube trays so that I always have some ready.
Since I have also been diagnosed with osteoporosis, AND it's been chilly, I have been drinking a lot of these broths, and making them into soups. The last was French onion, but without bread or cheese. Still delicious.
When I am having a lot of cramps I avoid most veggies, but when I feel better I make veggie juice from "safe" veggies. If I am feeling creative I use the pulp to make muffins (there are recipes for paleo muffins, which are delicious, in Dee's Kitchen).
I don't eat fruits in their whole, raw forms, but make smoothies in my blendtec blender (I have acquired all sorts of equipment over time so that I can produce what I need as efficiently as I can).
I hope you find your sensitivities ASAP, and can go into remission!
Lesley
Lesley, Oh My! You poor thing. I cant even imagine all these things that you have gone through. I thank you for giving me information and insight into what extremes you had to go through though.
I am saving up for the EnteroLab test. I saw its about 600.00 for the A + C lab test. I think thats the best one to get. I wish i could do it today, alas I have other restrictions.
Either way, thank you for the support...I appreciate you.
Lesley, Oh My! You poor thing. I cant even imagine all these things that you have gone through. I thank you for giving me information and insight into what extremes you had to go through though.
I am saving up for the EnteroLab test. I saw its about 600.00 for the A + C lab test. I think thats the best one to get. I wish i could do it today, alas I have other restrictions.
Either way, thank you for the support...I appreciate you.
Chrystal
tex
So i started the GF DF SF diet on Tuesday. I havent had nearly as much pain, but now I seem to have a weird D that isnt my normal! I suppose I should be happy that the pain and rotting feeling is going away to nearly anything, but why the new kind of D? Maybe because now Im feeling the full effect of the meds I am taking? Sulfasalzine, Donnatal & Budesonide? Should I stop taking the sulfasalzine like you were originally talking about since its similar to Asacol when it breaks down? What knowledge do you have of the Budesonide? Any advice or tips? I already feel so much better from taking your earlier advice.
So i started the GF DF SF diet on Tuesday. I havent had nearly as much pain, but now I seem to have a weird D that isnt my normal! I suppose I should be happy that the pain and rotting feeling is going away to nearly anything, but why the new kind of D? Maybe because now Im feeling the full effect of the meds I am taking? Sulfasalzine, Donnatal & Budesonide? Should I stop taking the sulfasalzine like you were originally talking about since its similar to Asacol when it breaks down? What knowledge do you have of the Budesonide? Any advice or tips? I already feel so much better from taking your earlier advice.
Chrystal
If you read a lot on this board you will see that many have it worse than I have. Many have more dx's than I do, and can eat less foods then I can.
I haven't managed to reach any sort of healing at any time. I have never had Norman visit ever, except for one time when I thought I had, but no! It was an illusion.
Seems to me you will manage your MC relatively fast if you find your trigger foods!
I haven't managed to reach any sort of healing at any time. I have never had Norman visit ever, except for one time when I thought I had, but no! It was an illusion.
Seems to me you will manage your MC relatively fast if you find your trigger foods!
link to the guide
http://www.ceceliasmarketplace.com/glut ... ree-guide/
Sorry, I didn't see this until now. I have no idea why I didn't post the link in the first place.
Sorry, I didn't see this until now. I have no idea why I didn't post the link in the first place.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan