I have been eating fermented vegetables and goat kefir. I seem to tolerate them well, but I am on Enticort(just starting to taper off on the 3 1/2 month program) and can eat most anything, so it maybe deceiving. I now ferment my own vegetables- got turned onto this by Body Ecology. I cannot find any posts regarding how these are tolerated. I don't want symptoms to come back after after I am off meds. I have had the blood food tests, but want to wait until I am off steroids to have the EnteroLab test.
Also, all posts seem to regard reactions to protein in foods, but what about Fodmaps and reactions to starch and carbohydrates?
Also, if we are food sensitive to egg whites, can't we use egg yolks?
Suzanne
Fermented foods, fodmaps, carbs and egg yolks
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Suzanne,
Welcome to our Internet family. You've asked some tough questions (tough because we all tend to be different in the ways that we react to foods, meds, and other diet changes), but I'll attempt to address them. And please remember that none of this is chiseled in stone.
You are quite correct that budesonide can mask all sorts of dietary issues for some of us. If the drug is effective for you then it is very likely to be capable of allowing you to eat foods that may cause you to react after the treatment regimen is ended. It's best to be overly cautious with your diet as you wean off the drug by tapering the dosage, and the slower you wean off, the less likely you are to suffer a relapse due to the rebound effect that occurs when a corticosteroid treatment is ended. It's much more practical to play it safe and maintain remission and then test foods back into the diet later, than to suffer a relapse and have to start over.
You probably haven't read any posts here about fermented vegetables because there aren't many posts about fermented vegetables. We find that such a high percentage of us have major mast cell issues that it tends to be counterproductive to encourage the consumption of fermented foods. In fact, for many of us mast cell issues appear to be the dominant reason why we may be unable to achieve or maintain a condition of stable remission, despite doing everything else right.
That said, quite a few of us have found that we may be able to tolerate fermented foods at certain times (such as outside of pollen allergy seasons, when mast cell issues are less likely to be a major factor in our health). Many of us (including me) have eaten sauerkraut during (and of course after) our recovery without any problems. A few members here seem to be able to tolerate items such as Kefir. And of course those who go to the trouble of growing and consuming such items insist that they benefit from eating or drinking them (despite frequent relapses and other issues in many cases). But for most of us, any high-histamine foods (including fermented foods) and foods or meds that promote the release of histamine are best minimized or at least carefully monitored.
There are many discussions in the archives here about Fodmaps and many members try to minimize them in their diet. Whether or not Fodmaps as a group are actually a major problem for MC patients remains to be seen. They certainly appear to be in some cases, but this could also be coincidence. It's something that we continue to study as more information becomes available.
The topic of carbohydrate digestion (starches are carbs, so I'll just lump them together here to simplify my response) is one that is generally ignored by the mainstream medical community (since the amount of formal training they receive in nutrition and diet could be inscribed on the head of a pin). But in the real world, compromised carb digestion is a major factor in the perpetuation of the inflammation that is associated with MC. It's well known that enteritis (from any cause, such as the flu, for example) results in compromised enzyme production in the small intestine. The first enzyme to fall by the wayside is lactase, so everyone who has intestinal inflammation automatically becomes lactose intolerant. And if the enteritis continues over an extended period, the ability to produce adequate amounts of additional enzymes will be compromised, in a certain hierarchical order. As a result, the patient has increasing difficulties digesting carbs, especially highly-processed carbs. If/when the enteritis is resolved, the ability to produce adequate amounts of digestive enzymes will typically be restored, in reverse order. In many cases however, if extensive intestinal damage (inflammation) prevailed for extended periods of time, the production potential of certain enzymes may be only partially recovered. Because of that, many of us find that we have to limit serving size of certain foods, even after extensive healing.
Every food considered to be a protein source contains many different proteins. The EnteroLab tests check for antibodies to the food proteins that seem to cause problems for the highest percentage of people who are sensitive to those particular foods. The tests are extremely specific (and expensive), so it would be prohibitively expensive to check for every possibility. Therefore, their egg test is targeted at antibodies to the primary protein (albumin) in chicken egg whites (albumen). That doesn't mean that no one is sensitive to any of proteins in egg yolks. It is generally true however, that most of us are not sensitive to egg yolks, even if we are sensitive to egg whites. However, it's also true that most people who are sensitive to chicken eggs (albumen) can safely eat duck, turkey, or goose eggs, for example.
That substitution option is much more limited in the case of cow's milk however, because the molecular structure of the casein in sheep or goat milk is too similar to the casein in cow's milk. The only safe animal-based substitutes for cow's milk are milk from the cameloid or equine families. IOW, most people who are sensitive to cow's milk should be able to safely consume the milk of camels, llamas, guanacos, alpacas, vicuñas, mares, donkeys, asses, zebras, etc.
I hope that some of this is helpful.
Tex
Welcome to our Internet family. You've asked some tough questions (tough because we all tend to be different in the ways that we react to foods, meds, and other diet changes), but I'll attempt to address them. And please remember that none of this is chiseled in stone.
You are quite correct that budesonide can mask all sorts of dietary issues for some of us. If the drug is effective for you then it is very likely to be capable of allowing you to eat foods that may cause you to react after the treatment regimen is ended. It's best to be overly cautious with your diet as you wean off the drug by tapering the dosage, and the slower you wean off, the less likely you are to suffer a relapse due to the rebound effect that occurs when a corticosteroid treatment is ended. It's much more practical to play it safe and maintain remission and then test foods back into the diet later, than to suffer a relapse and have to start over.
You probably haven't read any posts here about fermented vegetables because there aren't many posts about fermented vegetables. We find that such a high percentage of us have major mast cell issues that it tends to be counterproductive to encourage the consumption of fermented foods. In fact, for many of us mast cell issues appear to be the dominant reason why we may be unable to achieve or maintain a condition of stable remission, despite doing everything else right.
That said, quite a few of us have found that we may be able to tolerate fermented foods at certain times (such as outside of pollen allergy seasons, when mast cell issues are less likely to be a major factor in our health). Many of us (including me) have eaten sauerkraut during (and of course after) our recovery without any problems. A few members here seem to be able to tolerate items such as Kefir. And of course those who go to the trouble of growing and consuming such items insist that they benefit from eating or drinking them (despite frequent relapses and other issues in many cases). But for most of us, any high-histamine foods (including fermented foods) and foods or meds that promote the release of histamine are best minimized or at least carefully monitored.
There are many discussions in the archives here about Fodmaps and many members try to minimize them in their diet. Whether or not Fodmaps as a group are actually a major problem for MC patients remains to be seen. They certainly appear to be in some cases, but this could also be coincidence. It's something that we continue to study as more information becomes available.
The topic of carbohydrate digestion (starches are carbs, so I'll just lump them together here to simplify my response) is one that is generally ignored by the mainstream medical community (since the amount of formal training they receive in nutrition and diet could be inscribed on the head of a pin). But in the real world, compromised carb digestion is a major factor in the perpetuation of the inflammation that is associated with MC. It's well known that enteritis (from any cause, such as the flu, for example) results in compromised enzyme production in the small intestine. The first enzyme to fall by the wayside is lactase, so everyone who has intestinal inflammation automatically becomes lactose intolerant. And if the enteritis continues over an extended period, the ability to produce adequate amounts of additional enzymes will be compromised, in a certain hierarchical order. As a result, the patient has increasing difficulties digesting carbs, especially highly-processed carbs. If/when the enteritis is resolved, the ability to produce adequate amounts of digestive enzymes will typically be restored, in reverse order. In many cases however, if extensive intestinal damage (inflammation) prevailed for extended periods of time, the production potential of certain enzymes may be only partially recovered. Because of that, many of us find that we have to limit serving size of certain foods, even after extensive healing.
Every food considered to be a protein source contains many different proteins. The EnteroLab tests check for antibodies to the food proteins that seem to cause problems for the highest percentage of people who are sensitive to those particular foods. The tests are extremely specific (and expensive), so it would be prohibitively expensive to check for every possibility. Therefore, their egg test is targeted at antibodies to the primary protein (albumin) in chicken egg whites (albumen). That doesn't mean that no one is sensitive to any of proteins in egg yolks. It is generally true however, that most of us are not sensitive to egg yolks, even if we are sensitive to egg whites. However, it's also true that most people who are sensitive to chicken eggs (albumen) can safely eat duck, turkey, or goose eggs, for example.
That substitution option is much more limited in the case of cow's milk however, because the molecular structure of the casein in sheep or goat milk is too similar to the casein in cow's milk. The only safe animal-based substitutes for cow's milk are milk from the cameloid or equine families. IOW, most people who are sensitive to cow's milk should be able to safely consume the milk of camels, llamas, guanacos, alpacas, vicuñas, mares, donkeys, asses, zebras, etc.
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.
Thank you!
Wow! What a lengthy and informative reply. I have struggled with IBS-C for 40 years and 3 years ago, my pain became severe with much bloating. Used Norman Ribillard book, The Fast Tract Digestion, to find substantial relief. It is based on fermentation potential. Says most fiber and lots of carbs cause problems. But white, jasmine rice can be eaten because it is low amylose. Then got very ill with c-diff and E. coli infection which progressed to M C. So it is hard trying to balance different diets. So many people saying so many conflicting things about healing the gut=much confusion.
I must say, being on Endicort has been a dream come true! I am a different person living a different life. I don't want to relapse, though.
Do you know how long after being off Endicort the EnteroLab test is accurate?
Thanks again, Tex, for your info. BTW-I live North of Austin.
I must say, being on Endicort has been a dream come true! I am a different person living a different life. I don't want to relapse, though.
Do you know how long after being off Endicort the EnteroLab test is accurate?
Thanks again, Tex, for your info. BTW-I live North of Austin.
I have to agree that high-fiber and high-carb diets don't play nice with MC (nor with any other digestive issues for that matter), and we (the members of this discussion forum) have found that white, jasmine rice works better than any other grain during recovery (and after recovery, for that matter).
As long as you are not having any mast cell issues, then fermented foods may be fine for you. I only mentioned that because so many of us (including me) have mast cell issues that throw a monkey wrench into our digestive machinery, especially during the pollen seasons. My symptoms seem to be letting up though, now that the pollen season seems to be past the peak here.
I've forgotten how long the lab recommends to wait before testing after a treatment regimen using budesonide. Hopefully someone else will remember and chime in. I'm thinking that it's somewhere in the 6–8 weeks range for short (normal) treatment programs, and longer if budesonide has been used for 6 months to a year or longer. But if you can get to the 6–8 week range without a relapse, then you may not need to do the testing.
Some doctors use their own budesonide dosing schedule and recommend tapering the dose sooner than the original label recommendations. If you have only been taking budesonide at the full dose for a month for example, then you could probably do a stool test now and the results wouldn't be affected enough to make any significant difference in the findings. If you've been taking it for 2 months or longer though (at full dose), then some foods might possibly show false negative results.
If some of the rain forecasts for tomorrow and Monday turn out to be reasonably accurate then we're both on the wet side of Austin (at least for a few days).
You're very welcome,
Tex
As long as you are not having any mast cell issues, then fermented foods may be fine for you. I only mentioned that because so many of us (including me) have mast cell issues that throw a monkey wrench into our digestive machinery, especially during the pollen seasons. My symptoms seem to be letting up though, now that the pollen season seems to be past the peak here.
I've forgotten how long the lab recommends to wait before testing after a treatment regimen using budesonide. Hopefully someone else will remember and chime in. I'm thinking that it's somewhere in the 6–8 weeks range for short (normal) treatment programs, and longer if budesonide has been used for 6 months to a year or longer. But if you can get to the 6–8 week range without a relapse, then you may not need to do the testing.
Some doctors use their own budesonide dosing schedule and recommend tapering the dose sooner than the original label recommendations. If you have only been taking budesonide at the full dose for a month for example, then you could probably do a stool test now and the results wouldn't be affected enough to make any significant difference in the findings. If you've been taking it for 2 months or longer though (at full dose), then some foods might possibly show false negative results.
If some of the rain forecasts for tomorrow and Monday turn out to be reasonably accurate then we're both on the wet side of Austin (at least for a few days).
You're very 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.