I am new to this forum and so very happy to find you yesterday! I have Celiac Disease (diagnosed 2 years) and Lymphocytic Colitis (diagnosed 6 months) I follow Paleo with occasional corn tortillas and rice. No other intentional dietary indiscretions. After my Celiac diagnosis my diarrhea never completely resolved until I was FINALLY diagnosed w/ MC and placed on Budesonide. It was like "magic" in 3 days my diarrhea of 14 straight weeks resolved! Fast forward to now (6 mos later) I am having a "flare" of sorts, diarrhea returned daily. My diet has not changed except for a few bites of GF holiday sweets. So...I'm wondering about coffee...should it be avoided? Forever? I did start 9mg of Budesonide 4 days ago and things are already "better".
Another question... 6 months prior to my Celiac Diagnosis I did the EnteroLab testing. Do you think it would be beneficial to test for Food Sensitivity again? Does taking Budesonide effect the results?
Thank you so much!
Should I stop coffee?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our Internet family. Many doctors recommend that MC patients should avoid coffee because it is classified as a secretagogue (meaning that it can cause increased endocrine gland activity), but for most of us that seems to be irrelevant. Typically it boils down to this:
If coffee sent us straight to the bathroom before our MC symptoms began, then it will continue to do the same now. However, if coffee did not act as a laxative before our symptoms began, then it probably won't be a problem now. For us, the biggest problem with coffee is often what we put in it. Most so-called "Non-Dairy" Creamers contain a derivative of casein, and so they have the same effects as dairy products on those of us who are sensitive to casein. So most of us who drink coffee use coconut milk, almond milk, rice milk, hemp milk, cashew milk, or sugar cubes in our coffee.
At one time I thought that once the genes that predispose to food sensitivities were triggered (by the onset of MC), then that status would not change in the future, and additional food sensitivities would never develop. However, roughly 8–10 years ago my EnteroLab test result for soy was negative. About 3 months ago I retested, and I discovered that everything was fine except for soy — my soy antibody level was 20.
I found that to be particularly worrisome because for approximately the last 10 years I have avoided soy (because I don't consider it to be suitable for human food), but I never was concerned about trace amounts (because of the negative test result). After receiving the new test results, when I checked my food and supplements, the only thing I found that contained soy was my fish oil supplement. I plan to retest in a few months or so, to see if that was the only source in my diet, or if something else might contain undeclared soy.
In most cases, several months of budesonide will not significantly affect the EnteroLab test results. After using budesonide for roughly half a year or so, there will be some effect, but most major food sensitivities may still show positive results, especially if they have been causing symptoms for a year or longer. But after roughly a year of using Budesonide, virtually all of the test results may show false negative results due to a significant degree of immune system suppression.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Many doctors recommend that MC patients should avoid coffee because it is classified as a secretagogue (meaning that it can cause increased endocrine gland activity), but for most of us that seems to be irrelevant. Typically it boils down to this:
If coffee sent us straight to the bathroom before our MC symptoms began, then it will continue to do the same now. However, if coffee did not act as a laxative before our symptoms began, then it probably won't be a problem now. For us, the biggest problem with coffee is often what we put in it. Most so-called "Non-Dairy" Creamers contain a derivative of casein, and so they have the same effects as dairy products on those of us who are sensitive to casein. So most of us who drink coffee use coconut milk, almond milk, rice milk, hemp milk, cashew milk, or sugar cubes in our coffee.
At one time I thought that once the genes that predispose to food sensitivities were triggered (by the onset of MC), then that status would not change in the future, and additional food sensitivities would never develop. However, roughly 8–10 years ago my EnteroLab test result for soy was negative. About 3 months ago I retested, and I discovered that everything was fine except for soy — my soy antibody level was 20.
I found that to be particularly worrisome because for approximately the last 10 years I have avoided soy (because I don't consider it to be suitable for human food), but I never was concerned about trace amounts (because of the negative test result). After receiving the new test results, when I checked my food and supplements, the only thing I found that contained soy was my fish oil supplement. I plan to retest in a few months or so, to see if that was the only source in my diet, or if something else might contain undeclared soy.
In most cases, several months of budesonide will not significantly affect the EnteroLab test results. After using budesonide for roughly half a year or so, there will be some effect, but most major food sensitivities may still show positive results, especially if they have been causing symptoms for a year or longer. But after roughly a year of using Budesonide, virtually all of the test results may show false negative results due to a significant degree of immune system suppression.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
in line with Tex's reply, some can have coffee no issues (i am one of those) and others do have issues
the only way to know is to try for your self... Keep in mind that you need to minimise contact with any other triggers while doing the 'coffee' experiment to know for sure if it is causing you issues
What type of coffee do you drink?
the only way to know is to try for your self... Keep in mind that you need to minimise contact with any other triggers while doing the 'coffee' experiment to know for sure if it is causing you issues
What type of coffee do you drink?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
should I drink coffee
Thank you for your replies. I drink whole bean, fair trade, medium roast which I grind daily. I add 1 tablespoon of Great Lakes Collagen and 2 t. local honey. I usually drink two 8 oz cups per day. And yes it does send me to the bathroom within 20 minutes even when things are "normal". I don't remember what used to happen prior to my initial onset of Celiac symptoms over 4 years ago. As far as other "triggers" I have no idea what they are! I am very compliant to the Paleo diet (except occ. corn tortilla or white rice!) I was just trying to find info on why I would be experiencing a relapse when I have not liberalized my diet and I came across the information on coffee being a secretagogue. Any info on how to determine if secretagogue effect is a problem for me? Any lab tests available for that?
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Gabes-Apg
- Emperor Penguin
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
the coffee you are drinking is very low risk for gluten chemicals.
a suggestion is to have the coffee without the collagen and honey and see if you have the same reaction
so far as 'other triggers' it could be - too much fibre, you may be reacting to something else like Soy/legumes,
though the MC journey, new triggers can arise...
also environmental triggers, pollen, weather changes, chemicals, mold etc
a suggestion is to have the coffee without the collagen and honey and see if you have the same reaction
so far as 'other triggers' it could be - too much fibre, you may be reacting to something else like Soy/legumes,
though the MC journey, new triggers can arise...
also environmental triggers, pollen, weather changes, chemicals, mold etc
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Based on your fast response to coffee, I would have to say that it is definitely a problem for you. Whether or not its effect results in inflammation in addition to the laxative response is open to debate. I'm not aware of any official medical research that has explored this particular issue with regard to possible inflammation.
In addition to what Gabes added in her last post, many of us sometimes react seasonally due to mast cell-linked allergies (such as pollen allergies). IOW, it appears (at least it's a medically-unproven theory of mine) that in addition to the classic (medically official) T cell-driven inflammation that triggers MC, an alternate mode of inflammation exists, due to inappropriate mast cell activation. This is known as mast cell activation disorder (MCAD), and it results in elevated histamine levels in the intestines, which can trigger inflammation and D. You can read some basic information on how this is associated with MC in the short articles at the following links, and some of those articles contain additional references with more detailed information, if you wish to explore it further:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
IMO (and this is strictly my opinion), the urgent response caused by the ingestion of coffee may be associated with a histamine issue. IOW, histamine may be the common link. This would be an IgE-based reaction (a transient reaction), rather than the IgA reaction typically associated with chronic MC reactions. While many authorities claim that coffee is a low-histamine item, there is some evidence that (for some people) it may be a histamine liberator, and/or a diamine oxidase inhibitor. Diamine oxidase (DAO) is an enzyme naturally produced by the body. It is used to purge the body of excess (unused) histamine. Without adequate DAO, histamine levels build up in the blood stream and in certain tissues, leading to MCAD problems. People who have IBDs tend to be DAO deficient.
The combination of DAO depletion and histamine liberation can result in sort of a double whammy effect for susceptible individuals.
Tex
In addition to what Gabes added in her last post, many of us sometimes react seasonally due to mast cell-linked allergies (such as pollen allergies). IOW, it appears (at least it's a medically-unproven theory of mine) that in addition to the classic (medically official) T cell-driven inflammation that triggers MC, an alternate mode of inflammation exists, due to inappropriate mast cell activation. This is known as mast cell activation disorder (MCAD), and it results in elevated histamine levels in the intestines, which can trigger inflammation and D. You can read some basic information on how this is associated with MC in the short articles at the following links, and some of those articles contain additional references with more detailed information, if you wish to explore it further:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
IMO (and this is strictly my opinion), the urgent response caused by the ingestion of coffee may be associated with a histamine issue. IOW, histamine may be the common link. This would be an IgE-based reaction (a transient reaction), rather than the IgA reaction typically associated with chronic MC reactions. While many authorities claim that coffee is a low-histamine item, there is some evidence that (for some people) it may be a histamine liberator, and/or a diamine oxidase inhibitor. Diamine oxidase (DAO) is an enzyme naturally produced by the body. It is used to purge the body of excess (unused) histamine. Without adequate DAO, histamine levels build up in the blood stream and in certain tissues, leading to MCAD problems. People who have IBDs tend to be DAO deficient.
The combination of DAO depletion and histamine liberation can result in sort of a double whammy effect for susceptible individuals.
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.
Tex, thank you for the mast cell/ histamine information. I had not known to consider histamine as a possible problem. I have been eating Bubbie's sauerkraut daily (to increase probiotic intake), and I eat 4 cups of spinach, 1/4 avocado, and ripe banana everyday in a smoothie. I also take VSL #3 probiotic. Do you think that I should change any of these? I also found some lab work from 3 years ago (while trying to discover what was "wrong with me") my IgG for coffee was in the Very Low range.
Not all of us have histamine issues, but a surprisingly high percentage of us seem to have histamine problems of varying degrees. How long have you been taking the probiotic? Despite most doctors' recommendations to use a probiotic, our experience among the members here is that for the vast majority of us, at least while we are recovering, probiotics typically provide no benefits, and in many cases they cause reactions and/or prevent remission.
And I notice that the latest guidelines issued by the American Gastroenterological Association Institute for the medical management of microscopic colitis (published less than 2 weeks ago) no longer recommend probiotics for treating microscopic colitis. Now, like us, they advise against taking a probiotic. You can see a summary of their recommendations at the link below (scroll down almost to the bottom of the page at this link):
http://www.microscopiccolitisfoundation ... tions.html
Or you can open a PDF copy of the original publication from there, if you wish.
If symptoms persist despite your best efforts, another thing to consider is oxalates. Spinach contains large amounts of oxalates, and excessive amounts of spinach/oxalates can cause the development of kidney stones. But apart from the kidney stone risk, oxalates tend to cause digestive problems for some people who have an IBD. Too much fiber can also jeopardize recovery. After we have been in remission for a while, more fiber can usually be safely added to the diet, if the amount is increased slowly.
IMO the natural probiotic bacteria in Bubbie's Sauerkraut are probably not a problem for MCers. I ate that product sometimes while I was recovering, and it always seemed to digest well, with no noticeable problems. It's the synthetic (lab-developed) probiotics that tend to cause problems for IBD patients.
I eat a banana most days. A frozen banana with cashew or almond butter smeared on top makes a great snack. The trick is to peel the bananas and freeze them in a ziploc bag when they are just ripe (not a day or 2 later). In general, when fruit ripens, the histamine content is typically low to moderate, early on, but the histamine level climbs rapidly with each passing day. IOW, bananas that have been ripe for several days tend to present a major histamine challenge. That's also generally true for leftovers or uncooked food left in the refrigerator. If food is not going to be eaten within a day or so, it should be frozen, to reduce the risk of histamine propagation.
You're most welcome,
Tex
And I notice that the latest guidelines issued by the American Gastroenterological Association Institute for the medical management of microscopic colitis (published less than 2 weeks ago) no longer recommend probiotics for treating microscopic colitis. Now, like us, they advise against taking a probiotic. You can see a summary of their recommendations at the link below (scroll down almost to the bottom of the page at this link):
http://www.microscopiccolitisfoundation ... tions.html
Or you can open a PDF copy of the original publication from there, if you wish.
If symptoms persist despite your best efforts, another thing to consider is oxalates. Spinach contains large amounts of oxalates, and excessive amounts of spinach/oxalates can cause the development of kidney stones. But apart from the kidney stone risk, oxalates tend to cause digestive problems for some people who have an IBD. Too much fiber can also jeopardize recovery. After we have been in remission for a while, more fiber can usually be safely added to the diet, if the amount is increased slowly.
IMO the natural probiotic bacteria in Bubbie's Sauerkraut are probably not a problem for MCers. I ate that product sometimes while I was recovering, and it always seemed to digest well, with no noticeable problems. It's the synthetic (lab-developed) probiotics that tend to cause problems for IBD patients.
I eat a banana most days. A frozen banana with cashew or almond butter smeared on top makes a great snack. The trick is to peel the bananas and freeze them in a ziploc bag when they are just ripe (not a day or 2 later). In general, when fruit ripens, the histamine content is typically low to moderate, early on, but the histamine level climbs rapidly with each passing day. IOW, bananas that have been ripe for several days tend to present a major histamine challenge. That's also generally true for leftovers or uncooked food left in the refrigerator. If food is not going to be eaten within a day or so, it should be frozen, to reduce the risk of histamine propagation.
You're most welcome,
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.
Tex, I have been taking probiotic for 3 years and specifically the VSL #3 for 8 months. It is the prescription probiotic approved and used for dietary management of ulcerative colitis. It is very expensive ($135/20 day supply) and not covered by insurance for MC.
I have trouble keeping weight on and now I am so afraid of having to give up even more food items. Coffee seems like no problem to avoid but giving up the foods high in histamine make me worry about losing more weight and muscle mass!
I have trouble keeping weight on and now I am so afraid of having to give up even more food items. Coffee seems like no problem to avoid but giving up the foods high in histamine make me worry about losing more weight and muscle mass!
I will agree with you that if you are going to take a probiotic, VSL #3 is one of the best choices. Some versions of it unfortunately contain ingredients that many MCers cannot tolerate. This comment:
We all tend to think that products that we have been using for a long time (presumably without any issues initially), are "safe" for us. Unfortunately, that's not always true. Believe it or not, there is even published medical research that verifies a human tendency to ignore cautionary advice about products that we are using and we "trust". Here's a quote from a first draft of chapter 2 of a book I'm currently writing:
1. Cao, Y. (J.), Just, D. R., Turvey, C., & Wansink, B. (2015). Existing food habits and recent choices lead to disregard of food safety announcements. Canadian Journal of Agricultural Economics, 63(4), pages 491–511. doi: 10.1111/cjag.12089
2. Cornell University Food & Brand Lab. (2015, November 24). Safety last? [Web log message]. EurekAlert! | American Association for the Advancement of Science (AAAS). Retrieved from http://www.eurekalert.org/pub_releases/ ... 112415.php
OK, that said, I'm not trying to say that the probiotic product you are using is preventing remission, because I have no way of knowing the details of your particular situation. VSL #3 may or may not be a contributing factor. The only way to find out is to stop using it for a few days. I just want you to be aware of the risk, in the event that you are unable to reach remission. When remission continues to be elusive, despite dedication, sacrifice, and hard work, we can't afford to leave any stone unturned. Sometimes we have to look far and wide to discover that last piece of the puzzle, and sometimes that last piece of the puzzle turns out to be the very item that we have trusted implicitly right from the start — the only one that we "knew" was safe.
And regarding high-histamine foods — I'm not suggesting that you give them up. I'm suggesting that you limit the total amounts of foods that contain high levels of histamine. IOW, if you want to eat foods known to develop high histamine levels, eat them before they develop high histamine levels. IMO, a barely-ripe banana tastes just as good as (or better than) an over-ripe banana. Fresh fish or chicken tastes much better than fish or chicken that has been kept in the fridge too long.
But you only need to be concerned with high-histamine foods if you actually have a good reason to believe that high-histamine foods are causing problems for you. Not everyone is significantly affected by them.
I hope that some of this is helpful.
Tex
concerns me. Yes, MC may have been the reason why your symptoms never completely resolved. But the probiotic products you have been taking might also be at least part of the reason why your symptoms never completely resolved, and if your symptoms never completely resolved because of them, then they might possibly have been one of the reasons why MC developed.After my Celiac diagnosis my diarrhea never completely resolved until I was FINALLY diagnosed w/ MC and placed on Budesonide.
We all tend to think that products that we have been using for a long time (presumably without any issues initially), are "safe" for us. Unfortunately, that's not always true. Believe it or not, there is even published medical research that verifies a human tendency to ignore cautionary advice about products that we are using and we "trust". Here's a quote from a first draft of chapter 2 of a book I'm currently writing:
And here are references 1 and 2 from that quote:Recent research based on warnings about food safety involving toxins in certain foods suggests that most people tend to modify their perceptions of warnings about food risks if the information conflicts with their personal beliefs or personal preferences.1, 2
The net effect is that if a favorite food is involved, then for most people, the perceived risk is viewed as significantly lower than the actual risk. Some people will even totally ignore a warning if it conflicts with their beliefs. The implication is that information about risks is not sufficient to convince some or possibly most people to change their attitude, let alone convince them to change their behavior.
So clearly, if food safety warnings about possible toxins in food are not sufficient to change behavior among the general population, then it's no wonder that warnings about personal food sensitivities are not always seen as important as they should be. And of course the risk with treatments based on diet changes is that a lower perception of risk, or a lower opinion of the importance of a recommendation can lead to less attention to details that may result in failure of the treatment to bring remission.
1. Cao, Y. (J.), Just, D. R., Turvey, C., & Wansink, B. (2015). Existing food habits and recent choices lead to disregard of food safety announcements. Canadian Journal of Agricultural Economics, 63(4), pages 491–511. doi: 10.1111/cjag.12089
2. Cornell University Food & Brand Lab. (2015, November 24). Safety last? [Web log message]. EurekAlert! | American Association for the Advancement of Science (AAAS). Retrieved from http://www.eurekalert.org/pub_releases/ ... 112415.php
OK, that said, I'm not trying to say that the probiotic product you are using is preventing remission, because I have no way of knowing the details of your particular situation. VSL #3 may or may not be a contributing factor. The only way to find out is to stop using it for a few days. I just want you to be aware of the risk, in the event that you are unable to reach remission. When remission continues to be elusive, despite dedication, sacrifice, and hard work, we can't afford to leave any stone unturned. Sometimes we have to look far and wide to discover that last piece of the puzzle, and sometimes that last piece of the puzzle turns out to be the very item that we have trusted implicitly right from the start — the only one that we "knew" was safe.
And regarding high-histamine foods — I'm not suggesting that you give them up. I'm suggesting that you limit the total amounts of foods that contain high levels of histamine. IOW, if you want to eat foods known to develop high histamine levels, eat them before they develop high histamine levels. IMO, a barely-ripe banana tastes just as good as (or better than) an over-ripe banana. Fresh fish or chicken tastes much better than fish or chicken that has been kept in the fridge too long.
But you only need to be concerned with high-histamine foods if you actually have a good reason to believe that high-histamine foods are causing problems for you. Not everyone is significantly affected by them.
I hope that some of this is helpful.
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.
I hope it will answer most of your questions, and I hope that the New Year will bring you the remission you are working toward.
Tex
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.