I have the LC, and have just sent off my Enterolab test, so in a couple of weeks I should get some feedback on my intolerances, however it is pretty likely, that I have most of them: Yeast, Casein, Soy and most likely Gluten.
I would like to start the diet right now, as I have been eating all kinds of offending foods lately, in order to see my reaction in the tests.
However, I want to know from you, what is the right strategy to adopt, as my diet most likely will be very severlely restricted. I cannot take entocort, as I have developed some side effects after a month of taking it, so the diet will be my only way of healing.
The questions are two:
- Is it strictly necessary to eliminate the offending groups 100%, or is a less strict adherence going to work? e.g. What if I drink a glass of wine once a week?
- Given the restrictivenes of the diet, is it also necesary to eliminate all the irritating foods, which do not come from the forbidden groups - like the vegetables, fruit, nuts, etc in the first months, or is it possible to consume them in small amounts?
I have to mention, that I do NOT have a problem with D, but mainly with pain and bloating. Actually, the food that causes me the worst reaction now are bananas...
BTW, Is buckwheat (and buckwheat noodles) permitted in a gluten free diet?
The right diet strategy to heal
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Good for you, for ordering those tests. As you say, the results should remove all doubt about which foods you need to avoid.
If you are truly intolerant to a food, (a protein intolerance, not a sugar "intolerance"), then you need to avoid it as close to 100% as you can possibly get. Some of us can tolerate tiny trace amounts, (below, for example, 50 parts per million), but we are all different, and we all have our own threshold for the minimum amount that will cause a reaction, and those thresholds are quite low. (For many of us, a small crumb, would be enough to set off a reaction, and almost all of us would react to a large crumb).
All wine contains yeast/sulfites. If you are going to try to locate a type of wine that you might be able to tolerate, look for a wine listed as low-sulfite. If you can't tolerate it now, you probably will be able to tolerate some of the low-sulfite wines after your gut heals.
We are all different in how well we can tolerate fruits, veggetables, etc., but if bananas bother you, then fiber is probably one of your main problems. It's best to avoid all fruits, and all vegetables should be peeled, (most of the fiber is in the peel), and well-cooked, (overcooked). You may be able to tolerate vegetables such as Irish potatoes, squash, and maybe green beans and broccoli, but you may have to experiment. Lettuce is one of the worst foods - almost all of us react to it, (until our gut heals), and many of us have trouble with tomatoes, tapioca, chilis, melons, onions, garlic, dried beans. You may have to experiment to figure out what you can tolerate. Generally, the higher the fiber content, the more likely we are to have problems with it.
Yes, buckwheat is gluten-free. It is not classified as a grain.
Good luck with this, and please keep us updated on how you are doing.
Tex
Good for you, for ordering those tests. As you say, the results should remove all doubt about which foods you need to avoid.
If you are truly intolerant to a food, (a protein intolerance, not a sugar "intolerance"), then you need to avoid it as close to 100% as you can possibly get. Some of us can tolerate tiny trace amounts, (below, for example, 50 parts per million), but we are all different, and we all have our own threshold for the minimum amount that will cause a reaction, and those thresholds are quite low. (For many of us, a small crumb, would be enough to set off a reaction, and almost all of us would react to a large crumb).
All wine contains yeast/sulfites. If you are going to try to locate a type of wine that you might be able to tolerate, look for a wine listed as low-sulfite. If you can't tolerate it now, you probably will be able to tolerate some of the low-sulfite wines after your gut heals.
We are all different in how well we can tolerate fruits, veggetables, etc., but if bananas bother you, then fiber is probably one of your main problems. It's best to avoid all fruits, and all vegetables should be peeled, (most of the fiber is in the peel), and well-cooked, (overcooked). You may be able to tolerate vegetables such as Irish potatoes, squash, and maybe green beans and broccoli, but you may have to experiment. Lettuce is one of the worst foods - almost all of us react to it, (until our gut heals), and many of us have trouble with tomatoes, tapioca, chilis, melons, onions, garlic, dried beans. You may have to experiment to figure out what you can tolerate. Generally, the higher the fiber content, the more likely we are to have problems with it.
Yes, buckwheat is gluten-free. It is not classified as a grain.
Good luck with this, and please keep us updated on how you are doing.
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 am sorry if my question will appear as plain stupid, byt yeast intollerance has been put up so often here, that I believed it classified among the "protein" intollerances, although personally I thiink that yeast is a type of mushroom. Therefore, in your opinion, is yeast intollerance among the potential primary causes of colitis along gluten and soy, or is it a "nuisance" type of intollerance, like lactose or fructose one? I am making the fuss about it, because if I should be on a GF,CF,YF,SF diet plus I cannot eat fruit or vegetables, then in practice there would be very few foods indeed left to try. I know that yeast can also be present in dried fruit or mature fruit, plus it is present in grape juice and grape skins. As to the wine, normally full bodied, aged red wine does not contain sulfites, but it obviously contains yeast.
No, that's not a stupid question, it's actually a very good question, because it seems that yeast actually does not fit into either category. In my opinion, (and this is just my opinion - it is not verified by scientific research, anywhere in the literature, that I am aware of), yeast is unique, in that it does not seem to cause a permanent state of intolerance. Here is my reasoning:
As background information, consider that yeast is always present in the human body, but it does not cause any problems unless it gets out of control, and "overgrows", (a condition referred to as a yeast overgrowth, in the literature). Many doctors, (especially GI specialists), do not believe that there is such a thing as a yeast overgrowth, and yet doctors who use "natural" methods, treat cases regularly, and the patients' symptoms go away, and their health returns, after they get the yeast back under control.
I have read somewhere, (but I don't recall where), that the only time that someone can test positive to a yeast intolerance test, is if they have a yeast overgrowth, at the time the sample is taken, and in my opinion, that seems to be true. The experience of the members of this board has shown it to be true, also, and while several of us have been successfully treated for yeast overgrowth, and quite a few of us have tested positive to a stool test for yeast intolerance, we have found that almost everyone can tolerate yeast, after their gut heals.
That suggests that yeast protein "intolerance" is not a permanent intolerance. For all other known protein intolerances, once the genes are triggered, to cause an intolerance, we are permanently intolerant of that protein, (unless our genes are altered, again, at a later time). It is true that for someone who is yeast-intolerant, a stool test will detect IgA antibodies, so they apparently are indeed intolerant, at the time of the test. It appears, though, (and this is just my opinion), that the intolerance is caused by a yeast overgrowth, and once that overgrowth is controlled, then the genes are switch back off, (by some unknown mechanism), and the yeast intolerance disappears. None of us has done a followup test to verify this, but we have found that almost everyone can tolerate yeast again, after they are in remission, and their gut has had sufficient time to heal. Remember, though, that I'm not a doctor, and that's just my opinion, based on the experience of the members of this board.
Sulfites are a byproduct of yeast, so I don't believe there is such as a thing as a wine that has zero sulfites. They may be advertised to be sulfite-free, but I believe that if you check them carefully, you will find that they are actually low-sulfite, rather than no-sulfite. There is probably an industry threshold, below which, a low-sulfite wine can be listed as sulfite-free, (just as products containing less than 20 parts per million of gluten, can be legally listed as gluten-free). Low-sulfite wines, generally have a low remaining residue from the yeast, and are therefore more easily tolerated by people who are intolerant of yeast, but the wines are all different, so experiences can vary.
Obviously, using the sulfite level as a gauge to predict the yeast content is not a perfect tool, but it seems to be the best, (only), method that we have available, unfortunately.
Tex
As background information, consider that yeast is always present in the human body, but it does not cause any problems unless it gets out of control, and "overgrows", (a condition referred to as a yeast overgrowth, in the literature). Many doctors, (especially GI specialists), do not believe that there is such a thing as a yeast overgrowth, and yet doctors who use "natural" methods, treat cases regularly, and the patients' symptoms go away, and their health returns, after they get the yeast back under control.
I have read somewhere, (but I don't recall where), that the only time that someone can test positive to a yeast intolerance test, is if they have a yeast overgrowth, at the time the sample is taken, and in my opinion, that seems to be true. The experience of the members of this board has shown it to be true, also, and while several of us have been successfully treated for yeast overgrowth, and quite a few of us have tested positive to a stool test for yeast intolerance, we have found that almost everyone can tolerate yeast, after their gut heals.
That suggests that yeast protein "intolerance" is not a permanent intolerance. For all other known protein intolerances, once the genes are triggered, to cause an intolerance, we are permanently intolerant of that protein, (unless our genes are altered, again, at a later time). It is true that for someone who is yeast-intolerant, a stool test will detect IgA antibodies, so they apparently are indeed intolerant, at the time of the test. It appears, though, (and this is just my opinion), that the intolerance is caused by a yeast overgrowth, and once that overgrowth is controlled, then the genes are switch back off, (by some unknown mechanism), and the yeast intolerance disappears. None of us has done a followup test to verify this, but we have found that almost everyone can tolerate yeast again, after they are in remission, and their gut has had sufficient time to heal. Remember, though, that I'm not a doctor, and that's just my opinion, based on the experience of the members of this board.
Sulfites are a byproduct of yeast, so I don't believe there is such as a thing as a wine that has zero sulfites. They may be advertised to be sulfite-free, but I believe that if you check them carefully, you will find that they are actually low-sulfite, rather than no-sulfite. There is probably an industry threshold, below which, a low-sulfite wine can be listed as sulfite-free, (just as products containing less than 20 parts per million of gluten, can be legally listed as gluten-free). Low-sulfite wines, generally have a low remaining residue from the yeast, and are therefore more easily tolerated by people who are intolerant of yeast, but the wines are all different, so experiences can vary.
Obviously, using the sulfite level as a gauge to predict the yeast content is not a perfect tool, but it seems to be the best, (only), method that we have available, unfortunately.
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 very much for the explanation. I think, it will be better to adopt a more restrictive diet initially, and then try to expand into fruit and vegetables progressively. I will also surely come back for advice, once my test results will turn up. It is although a bit scary, to have to adopt a strategy, which should work over a long term (one to two years apparently), while it can be compromised by a tiny error ( a crumb of bread) over the short term (now). It sounds a lot like these long term trend following trading strategies, where the final P&L will be determined by the fact, if your stop loss got hit on the last tick , or not... As always, the devil is in the details...
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Gabes-Apg
- Emperor Penguin
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- Location: Hunter Valley NSW Australia
as mentioned in the other thread - titled Hello: new to forum started by goWest. On page 2 of this thread are suggestions and Tex's description about the benefits of a simple diet of well cooked foods based on a small number of ingredients for multiple weeks.
I am 6 months post diagnosis and as yet i have not braved introducing fruit into my diet.
Embracing life with MC and the changes it requires is majorily scary!
the basis of eating principles that are best for MC are totally opposite to everything we have learnt about healthy eating, ie eliminating fibre.
it can be very different to our cultural beliefs about foods (ie things like baguettes and fromage being so common in france)
and it makes socialising a bit harder which food is always a key part of.
I know myself as soon as i have anything that contains yeast or sulphides, i react within an hour. It is up there as number two irritant for me (gluten being number 1)
good luck withe the adjustment
I am 6 months post diagnosis and as yet i have not braved introducing fruit into my diet.
Embracing life with MC and the changes it requires is majorily scary!
the basis of eating principles that are best for MC are totally opposite to everything we have learnt about healthy eating, ie eliminating fibre.
it can be very different to our cultural beliefs about foods (ie things like baguettes and fromage being so common in france)
and it makes socialising a bit harder which food is always a key part of.
I know myself as soon as i have anything that contains yeast or sulphides, i react within an hour. It is up there as number two irritant for me (gluten being number 1)
good luck withe the adjustment
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have to agree, Gabes -- I've been doing a lot better on my simple diet of eggs, lean meat/poultry/fish, peeled and steamed zucchini, sauteed asparagus, ripe bananas, and white rice. I've tried cooking and pureeing some strawberries recently and seem to do okay when I just eat a few teaspoons at a time, every couple of days. Yum!!
Tex, I thought buckwheat was considered a grain? At least it is by the Specific Carbohydrate Diet, I believe: http://www.ccfa.org/about/news/scd. But then according to another source, it's a seed http://en.wikipedia.org/wiki/Buckwheat -- similar to the inconsistencies regarding quinoa, as well.
Tex, I thought buckwheat was considered a grain? At least it is by the Specific Carbohydrate Diet, I believe: http://www.ccfa.org/about/news/scd. But then according to another source, it's a seed http://en.wikipedia.org/wiki/Buckwheat -- similar to the inconsistencies regarding quinoa, as well.
I couldn't access the CCFA page in your link, and I haven't read her book, but if Elaine Gottschall classified buckwheat as a grain, then she made a taxonomy mistake. Maybe she said something such as this, which is commonly quoted on the internet, (regarding the SCD):
"oats, rice, buckwheat, millet, spelt, and cereals, flours, or other products made from any of these",
and someone misinterpreted it. Of course, she was still wrong about it being problematic, even if she didn't consider it to be a grain, if she did indeed include it in her "forbidden foods" list.
From your Wikipedia link:
Tex
"oats, rice, buckwheat, millet, spelt, and cereals, flours, or other products made from any of these",
and someone misinterpreted it. Of course, she was still wrong about it being problematic, even if she didn't consider it to be a grain, if she did indeed include it in her "forbidden foods" list.
From your Wikipedia link:
All grains, (cereals), are grasses. Buckwheat is a broadleaf plant, in the same family as rhubarb.Despite the common name and the grain-like use of the crop, buckwheat is not a cereal or grass. It is called a pseudocereal to emphasize that it is not related to wheat.
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.
from when I first found the PP
"What Grains are Allowed?
At first the impression is that there is little left to eat. A common question is "what do I have for breakfast?". Luckily there are many gluten free grains and seeds and they are becoming more common in manufactured foods. The gluten free grains and seeds are: quinoa, rice, corn, amaranth, buckwheat, flaxseeds, and millet. There are many other ingredients used in gluten free products such as potato, arrowroot, sago, sorghum, tapioca and teff."
When I first found the PP, I couldn't understand how buckwheat waffles could be GF.
I just bought quinoa a few weeks ago. It is different. I prepared it in my rice maker (DH LOVES rice).
At first the impression is that there is little left to eat. A common question is "what do I have for breakfast?". Luckily there are many gluten free grains and seeds and they are becoming more common in manufactured foods. The gluten free grains and seeds are: quinoa, rice, corn, amaranth, buckwheat, flaxseeds, and millet. There are many other ingredients used in gluten free products such as potato, arrowroot, sago, sorghum, tapioca and teff."
When I first found the PP, I couldn't understand how buckwheat waffles could be GF.
I just bought quinoa a few weeks ago. It is different. I prepared it in my rice maker (DH LOVES rice).
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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Joefnh
- Rockhopper Penguin
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- Location: Southern New Hampshire
Gowest I have discovered that the "simple diet" at least for me has been as important as the Entocort. Initially I just avoided gluten and my system was still a having a significant number of 'bad' days. I have been following essentially a paleo diet that consists of a few simple meats: chicken, lamb and salmon. Along with the meats I have been allowing myself carrots or peas which I seem to tolerate, and white rice. I keep the spices simple. I have eliminated all packaged or processed foods It sounds like you are doing more or less the same thing.
For more info on this diet see: http://www.perskyfarms.com/phpBB2/viewt ... es+cooking
There has been the odd occasion that I have gone outside these parameters and found that it can cause significant issues. At least for the next few months I intend on keeping to this diet.
I did try to taper off of the Entocort after being on it for only 8 weeks and had a very rough week last week until my GI doc put me back on the 9mg dose for another 8 weeks
Thanks for sharing your posts gowest, I hope you continue to improve
--Joe
For more info on this diet see: http://www.perskyfarms.com/phpBB2/viewt ... es+cooking
There has been the odd occasion that I have gone outside these parameters and found that it can cause significant issues. At least for the next few months I intend on keeping to this diet.
I did try to taper off of the Entocort after being on it for only 8 weeks and had a very rough week last week until my GI doc put me back on the 9mg dose for another 8 weeks
Thanks for sharing your posts gowest, I hope you continue to improve
--Joe
Joe
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Kimberly M.
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It's so nice to hear that some of you have been on Entocort full dose for more than 2 months. I have been on it.....full dose for a little over 2 months and don't feel as though I am nearly ready to cut back. I have actually tried to reduce the dosage to two a couple of times and hasn't went well. As of this point I haven't changed my diet but am thinking I may have too. Not looking forward to the big life change......I do need to try the "simple diet" though as I know I can't stay on Entorcort forever.
Best wishes to you as you find your way through this difficult maze! Soo glad I have found this group to lean on:)
Kim:)
Best wishes to you as you find your way through this difficult maze! Soo glad I have found this group to lean on:)
Kim:)
I am also on a diet similar to Gabes and Joe, another version of meat, fish, veggies, fruits and in my case also rice. I agree with Joe that diet is at least as important as not even more important than the medication. In short and long term.
Kim, I can understand you are not looking forward to this big life change. It isn't always easy and sometimes I get fed up with it too. My main motivation was, I wanted to be healthy again and feel great. Get rid of the fog in my head, the fatigue, the uncomfortable feeling in my stomach and bowels (what can keep me awake during night). If you want to change you food habits, my advice would be do it step by step. Find out what food is important you (or food moments) and try to find replacements. For me really important is my daily cappuccino. I still drink it, decaf and with ricemilk. The taste is different, but after a while I got used to the new taste and like it know. Forcing yourself into a lifestyle and diet "because it is healthy" or "you have too", my experience is that doesn't work. Within the possibilities of your food intolerances (which you to avoid in any case) try to find a way to combine your diet with your lifestyle and your taste.
Kim, I can understand you are not looking forward to this big life change. It isn't always easy and sometimes I get fed up with it too. My main motivation was, I wanted to be healthy again and feel great. Get rid of the fog in my head, the fatigue, the uncomfortable feeling in my stomach and bowels (what can keep me awake during night). If you want to change you food habits, my advice would be do it step by step. Find out what food is important you (or food moments) and try to find replacements. For me really important is my daily cappuccino. I still drink it, decaf and with ricemilk. The taste is different, but after a while I got used to the new taste and like it know. Forcing yourself into a lifestyle and diet "because it is healthy" or "you have too", my experience is that doesn't work. Within the possibilities of your food intolerances (which you to avoid in any case) try to find a way to combine your diet with your lifestyle and your taste.
Joe, thanks for the link to Gabes' recipe thread! I've never bought lamb in the store, but I did love the taste at restaurants and will try it out at home.
Sounds like we're also similar in tapering off Entocort too soon (I reduced my dosage to 6mg per day after only 6 weeks of taking Entocort). Going back to 9mg helped me, and I hope it helps you, too. From what I understand, 6 months to a year at full dosage is normal before starting to taper off. I hope to wean off the Imodium completely first and just be on one med (the Entocort) plus diet.
Sounds like we're also similar in tapering off Entocort too soon (I reduced my dosage to 6mg per day after only 6 weeks of taking Entocort). Going back to 9mg helped me, and I hope it helps you, too. From what I understand, 6 months to a year at full dosage is normal before starting to taper off. I hope to wean off the Imodium completely first and just be on one med (the Entocort) plus diet.
I have noticed, that most of you re forced to eliminate whatever offending food, because the penalty is an instant attack of D. However, in my case this is not happening, my penalty is a dose of pain. This makes me think about two aspects of the dieting strategy which are not often mentioned:
- once the gut nflammation is on, is it necesary to eliminate all irritating foods, even if they do not cause the immune response, because this way, the gut heals faster/better? A simple example here could be coffee, which is universally recognized as an irritant to the intestine, but which does not seem to have anything to do with the autoimmune response.
- if the answer to the first question is positive, would it also be desirable to use "gut screening" substances before meals, in order to further protect the intestines from whatever source of irritation? My GE has subscribed me Bedelix, which is basically a type of clay (argilla), is chemically inert, and is designed to protect the intestines. Another century old product, which I havce tried and sems to work ok, is ground, decorticated flaxseed brew (ground seeds covered with hot water), I doubt it will be popular here, because it has moderate laxative properties - has anybody heard of it or tried it?
- once the gut nflammation is on, is it necesary to eliminate all irritating foods, even if they do not cause the immune response, because this way, the gut heals faster/better? A simple example here could be coffee, which is universally recognized as an irritant to the intestine, but which does not seem to have anything to do with the autoimmune response.
- if the answer to the first question is positive, would it also be desirable to use "gut screening" substances before meals, in order to further protect the intestines from whatever source of irritation? My GE has subscribed me Bedelix, which is basically a type of clay (argilla), is chemically inert, and is designed to protect the intestines. Another century old product, which I havce tried and sems to work ok, is ground, decorticated flaxseed brew (ground seeds covered with hot water), I doubt it will be popular here, because it has moderate laxative properties - has anybody heard of it or tried it?