I am trying to control MC with a very restricted diet. I have inexorably gotten thinner and thinner with each restriction. Now maintaining weight is a problem that leaves me hungry and cold. In recent weeks I started reacting to my previously successful diet of white rice and meat.
Is there a magic list of hypo-allergenic foods? A rotation? A calorie crammer?
Thanks for this forum. It has been VERY helpful. I am studying the thoughtful suggestions from Tex.
- I’m experimenting with non-grain seeds
- Can I do more with oils? I don’t seem to have a reaction to oils like olive oil and butter. I have been dousing rice with oil. Can I consume that sort of thing in bulk?
- Can I do more with sweets? I’m avoiding corn syrup and desserts with wheat or milk, but I don’t seem to have a reaction to refined sugar.
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Here is a short history:
1) I had diarrhea in the morning, 2-3 bouts consistently, for about five years, before I was diagnosed with MC during a colonoscopy.
2) I took Budesonide for about a year. This suppressed the symptoms to about 50 poops per month in my log, rather than 75. However, I decided that it can’t be good to take systemic steroids for the rest of my life.
3) Following advice on this forum (Hooray), I eliminated wheat. My symptoms improved, and I went off the Budesonide in March of this year.
4) The poop count started increasing again, and I had to eliminate fruits, vegetables, and anything with fiber. Sad. I got out the grill. Fun. My symptoms steadily declined while I was eating only white rice, olive oil, and meat, and learning to make fewer exceptions. By August, I was down to 40 poops, 1.29 per day, which is only 29% more than expected.
5) During this time, I was getting more sensitive to some foods. I eliminated beef. I eliminated fish. I eliminated potatoes. Eventually I was down to white rice and pork. By September, my poop count was moving up again. In October it ramped up to the point where I am on track for 55 in October and 75 in November. I tried 24 hours eating only white rice, and experienced 2 bouts of diarrhea the next day. I tried 24 hours eating only pork, and experience 3 bouts the next day.
6) In September I got some immune test results from Enterolabs. I reacted to everything at a “moderate” or “most” level. Their standard suggestion is to eat non-grain seeds. So, last week I headed to the bulk bins and got some quinoa, lentils, beans, and sunflower seeds. It seems like I am tolerating the quinoa and lentils. The sunflower seeds make a nice calorific snack in moderation. I have a bad reaction to beans. Maybe it is possible to find my way with this type of food. One issue is that to maintain weight with this category of food you have to eat a LOT of fiber every day.
---------------------------
Results from the recent Enterolabs test are like this:
Fecal Anti-gliadin IgA 97 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 46 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 55 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 17 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 30 Units (Normal Range is less than 10 Units)
Food to which there was no significant immunological reactivity
- None
Food to which there was some immunological reactivity (1+):
- None
Food to which there was moderate immunological reactivity (2+):
Corn
Rice
Tuna
Beef
Pork
Cashew
Almond
Food to which there was significant and/or the most immunological reactivity (3+):
Oat
Chicken
Walnut
White potato
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Oat
Grain toward which you displayed intermediate immunologic reactivity: Corn
Grain toward which you displayed the least immunologic reactivity: Rice
Meats:
Meat toward which you displayed the most immunologic reactivity: Chicken
Meat toward which you were next most immunologically reactive: Tuna
Meat toward which you displayed intermediate immunologic reactivity: Beef
Meat toward which you displayed the least immunologic reactivity: Pork
Nuts:
Nut toward which you displayed the most immunologic reactivity: Walnut
Nut toward which you displayed intermediate immunologic reactivity: Cashew
Nut toward which you displayed the least immunologic reactivity: Almond
Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible.
What should I eat? Ideas?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: What should I eat? Ideas?
Hi,
Welcome to the group. Have you read the newsletter at the link below?
https://www.microscopiccolitisfoundatio ... 479987.pdf
Your results of the EnteroLab tests showed that you react strongly to every food in the two panels of tests, so all of those foods must be avoided, if you ever hope to get to remission. The articles in the newsletter at the link above will give you some guidelines on interpreting the EnteroLab results, and how to select foods for a recovery diet. In order to get your immune system to settle down, so that the inflammation will stop, and your MC symptoms begin to resolve, you will have to avoid even traces of all of the foods that cause you to react. Minimizing or avoiding most of them is not sufficient — you absolutely have to avoid all of them, because at this point, your immune system is hyperactive, and reacting to virtually everything. After you read, and understand that newsletter, or if you've already read it, please check back in, and we can discuss any questions you might have about specific foods.
Again, welcome aboard. Your test results suggest that you've been reacting to most of those foods for a relatively long time, so getting your immune system to settle down may be quite a challenge, but it can certainly be done, with patience and dedication.
I hope this is helpful,
Tex
Welcome to the group. Have you read the newsletter at the link below?
https://www.microscopiccolitisfoundatio ... 479987.pdf
Your results of the EnteroLab tests showed that you react strongly to every food in the two panels of tests, so all of those foods must be avoided, if you ever hope to get to remission. The articles in the newsletter at the link above will give you some guidelines on interpreting the EnteroLab results, and how to select foods for a recovery diet. In order to get your immune system to settle down, so that the inflammation will stop, and your MC symptoms begin to resolve, you will have to avoid even traces of all of the foods that cause you to react. Minimizing or avoiding most of them is not sufficient — you absolutely have to avoid all of them, because at this point, your immune system is hyperactive, and reacting to virtually everything. After you read, and understand that newsletter, or if you've already read it, please check back in, and we can discuss any questions you might have about specific foods.
Again, welcome aboard. Your test results suggest that you've been reacting to most of those foods for a relatively long time, so getting your immune system to settle down may be quite a challenge, but it can certainly be done, with patience and dedication.
I hope 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.
Re: What should I eat? Ideas?
Great encouragement! Yes, I let this go too long and developed many sensitivities. I will keep working it and looking for safer foods. I had some amaranth porridge today... pretty good. I'll try the recommended meats - turkey, lamb, and exotic meats. I'll also try making food packs on the weekend and freezing them.
I have some other questions about where to find calories to maintain weight, and as a stretch goal, fuel a busy day and a bike ride. I'm getting thinner and thinner as I cross foods off the safe list. It will be a lot easier to stick to the diet if I'm not always hungry.
Why does the Enterolabs doc recommend avoiding sugar? A brownie-equivalent dose of cane sugar might be great for fueling up. My current concern is staying on my diet while avoiding slow starvation, not stabilizing blood sugar.
Does anyone on this forum have recipes and recommendations for eating more oils? It seems that oils are often not a problem, and they have a lot of calories. I'm looking for ideas that don't involve nuts, as the Enterolabs panel showed sensitivity to walnuts, cashews, and almonds.
I have some other questions about where to find calories to maintain weight, and as a stretch goal, fuel a busy day and a bike ride. I'm getting thinner and thinner as I cross foods off the safe list. It will be a lot easier to stick to the diet if I'm not always hungry.
Why does the Enterolabs doc recommend avoiding sugar? A brownie-equivalent dose of cane sugar might be great for fueling up. My current concern is staying on my diet while avoiding slow starvation, not stabilizing blood sugar.
Does anyone on this forum have recipes and recommendations for eating more oils? It seems that oils are often not a problem, and they have a lot of calories. I'm looking for ideas that don't involve nuts, as the Enterolabs panel showed sensitivity to walnuts, cashews, and almonds.
Re: What should I eat? Ideas?
The reason sugar is a problem is covered in the article in the newsletter that can be found at the link below:
https://www.microscopiccolitisfoundatio ... 907624.pdf
Being hungry is a common complaint as people eliminate foods from their diet, but that's easily resolved. Simply eat larger helpings of the foods that are safe for you. There's no reason why you have to be hungry, just because you're eliminating additional foods from your diet.
Many of us add a dash of olive oil or refined coconut oil (refined coconut oil doesn't have a coconut flavor, as unrefined coconut oil does), or some other safe oil to our foods to get the benefit of added calories, as you suggest. Less common oils such as sunflower seed oil or Macadamia nut oil can be used, and they are used by some of us, but I've never tried them, myself. Be aware though, that since oils are a lubricant, if you get too much of them, it may cause diarrhea, or at least loosened stools. That doesn't mean that they're causing inflammation, but it's a sign that you're probably using too much. Avocados are a good source of additional fat, and most of us don't have any problem tolerating them. Maybe someone else may have some additional suggestions.
Tex
https://www.microscopiccolitisfoundatio ... 907624.pdf
Being hungry is a common complaint as people eliminate foods from their diet, but that's easily resolved. Simply eat larger helpings of the foods that are safe for you. There's no reason why you have to be hungry, just because you're eliminating additional foods from your diet.
Many of us add a dash of olive oil or refined coconut oil (refined coconut oil doesn't have a coconut flavor, as unrefined coconut oil does), or some other safe oil to our foods to get the benefit of added calories, as you suggest. Less common oils such as sunflower seed oil or Macadamia nut oil can be used, and they are used by some of us, but I've never tried them, myself. Be aware though, that since oils are a lubricant, if you get too much of them, it may cause diarrhea, or at least loosened stools. That doesn't mean that they're causing inflammation, but it's a sign that you're probably using too much. Avocados are a good source of additional fat, and most of us don't have any problem tolerating them. Maybe someone else may have some additional suggestions.
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.
Re: What should I eat? Ideas?
You may already know this, and if you do, I apologize for wasting your time, but it's not just the low-calorie diet that's causing you to lose weight. The main reason you're losing weight is because the inflammation associated with MC causes poor digestion, and therefore, poor nutrient absorption. After you get the Inflammation under control, and your intestines have some time to heal, you'll once again be able to gain weight. Currently, too many of your nutrients are going into the toilet, and most of your energy is being wasted by your immune system futilely attempting to control the inflammation, because it's being continuously regenerated.
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.
Re: What should I eat? Ideas?
Thanks. Very useful info.
I'm looking forward to trying a tasty avocado.
I'm looking forward to trying a tasty avocado.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: What should I eat? Ideas?
The other aspect to the healing journey is the mental and emotional acceptance.
changing our eating plan to restrictive diet can cause anxiety for some. and in cases like yours where there is weight loss this too can contribute to unsettlement / anxiety. a key part of healthy digestion is looking forward to the meal, being relaxed whilst eating etc.
and in line with Tex's reply - reducing inflammation will help with improved digestion etc.
healing take time. months not weeks.
changing our eating plan to restrictive diet can cause anxiety for some. and in cases like yours where there is weight loss this too can contribute to unsettlement / anxiety. a key part of healthy digestion is looking forward to the meal, being relaxed whilst eating etc.
and in line with Tex's reply - reducing inflammation will help with improved digestion etc.
healing take time. months not weeks.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
alibidwell32
- Posts: 12
- Joined: Sun Sep 12, 2021 1:09 am
Re: What should I eat? Ideas?
Hi All,
I had previously posted on here when I was struggling and unfortunately I’m back struggling again. I’ve taken budesonide twice now the first time I took them for 6 weeks and they worked really well, a month later the numerous trips to the bathroom in the morning came back. I went back on Budesonide for 3 months and it helped me but not as much as it did the first time. I’m now taking them every other day and already my symptoms have come back again and I’m feeling very down. Also suffer with acid reflux and horrible taste in mouth after eating anything and a burning upper stomach most of the day. I was on PPI’s for a year but was told to come off them. Everyday is exactly the same and I’m just not feeling any better at all.
The most recent advice I’ve had is to try immodium and to try the low FODMAP diet. Does anyone have any thoughts on this?
I am looking to try diet to manage my colitis, is there a list on here if safe foods that I can have a look at?
Thank you in advance, finding this group doesn’t make me feel so alone.
Ali
I had previously posted on here when I was struggling and unfortunately I’m back struggling again. I’ve taken budesonide twice now the first time I took them for 6 weeks and they worked really well, a month later the numerous trips to the bathroom in the morning came back. I went back on Budesonide for 3 months and it helped me but not as much as it did the first time. I’m now taking them every other day and already my symptoms have come back again and I’m feeling very down. Also suffer with acid reflux and horrible taste in mouth after eating anything and a burning upper stomach most of the day. I was on PPI’s for a year but was told to come off them. Everyday is exactly the same and I’m just not feeling any better at all.
The most recent advice I’ve had is to try immodium and to try the low FODMAP diet. Does anyone have any thoughts on this?
I am looking to try diet to manage my colitis, is there a list on here if safe foods that I can have a look at?
Thank you in advance, finding this group doesn’t make me feel so alone.
Ali
Re: What should I eat? Ideas?
Hello Ali,
Published medical research shows that every time a budesonide treatment is stopped and restarted again, it becomes less effective, until eventually it has virtually no efficacy at all. That's why it's only a temporary patch. In order to get long-term control of this disease, the diet changes suggested on this website are the only safe and effective option. All the information you need in order to get started selecting a recovery diet can be found at the following link:
viewtopic.php?f=79&t=22328
Also, a good explanation of exactly what you need to do can be found in an issue of the newsletter published by the microscopic colitis foundation. You can download a copy of of that newsletter at the following link:
https://www.microscopiccolitisfoundatio ... 479987.pdf
I hope this will get you started on a recovery program that will bring you long term remission.
Tex
Published medical research shows that every time a budesonide treatment is stopped and restarted again, it becomes less effective, until eventually it has virtually no efficacy at all. That's why it's only a temporary patch. In order to get long-term control of this disease, the diet changes suggested on this website are the only safe and effective option. All the information you need in order to get started selecting a recovery diet can be found at the following link:
viewtopic.php?f=79&t=22328
Also, a good explanation of exactly what you need to do can be found in an issue of the newsletter published by the microscopic colitis foundation. You can download a copy of of that newsletter at the following link:
https://www.microscopiccolitisfoundatio ... 479987.pdf
I hope this will get you started on a recovery program that will bring you long term remission.
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.
-
grammy1952
- Posts: 15
- Joined: Wed Dec 08, 2021 8:41 pm
Re: What should I eat? Ideas?
I tried the AIP diet for 2 months and then started the Low FODMAPS a couple of weeks ago with no real help. I just found the forum 2 days ago, but the dietary suggestions make sense and I'm trying them now.
Re: What should I eat? Ideas?
Please keep us posted on your progress, or lack of progress, if you seem to be stuck at some point in your journey to recovery.
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.
-
alibidwell32
- Posts: 12
- Joined: Sun Sep 12, 2021 1:09 am
Re: What should I eat? Ideas?
Thanks for the info Tex.
I was on Budesonide for 6 weeks in May/June the. Went back on it in August for 3 months and am still taking some now every other day, I have about 10 left. Do I need to wait to get the enterolab test done?
Thanks
Ali
I was on Budesonide for 6 weeks in May/June the. Went back on it in August for 3 months and am still taking some now every other day, I have about 10 left. Do I need to wait to get the enterolab test done?
Thanks
Ali
Re: What should I eat? Ideas?
Good question. With that history, the test results will probably be accurate, but it might be helpful to get the opinion of someone at EnteroLab, in case they strongly disagree. You can either email or phone the lab. I believe they are usually very responsive.
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.
-
alibidwell32
- Posts: 12
- Joined: Sun Sep 12, 2021 1:09 am
Re: What should I eat? Ideas?
Hi Tex
I posted a while back regarding my CC and unfortunately I’m still struggling. I have been on and off budesonide for a year now and have lots more bad days than good. I am also on Colesevelam for binding bile acid and that does help but not all the time and I’m on the maximum dose!
Back in March I had 2 months of absolutely no symptoms and it felt amazing, I was eating whatever I wanted and I was only on 3mg budesonide a day so assuming this is the first time I was in remission?
It’s now time for me to look at my diet as I am miserable and really want to get better, I’m getting married next yet and can’t imagine have 10 bouts of d the morning of my wedding day! I eat out a lot which is an issue but I know my diet isn’t great anyway.
I am coeliac and have been on a strict gluten free diet for 5 years now. I usually have gluten free bread and dairy free spread for breakfast, Tuna or egg salad for lunch and then usually have meat with veg or pasta or chips for dinner. I have a serious sweet tooth and do snack on fruit and gluten free cakes etc throughout the day.
I looked at the recovery board regarding where to start
And it was quite overwhelming. I’m wondering if you can tell me what I should do first? I can only assume the dairy and sugar that I eat is not going to help me recover?
Thanks in advance, I’m so thankful for this website as my gastro guy wants to put me on other medication and I don’t want to be on medication my whole life as I’m only 28!
Ali
I posted a while back regarding my CC and unfortunately I’m still struggling. I have been on and off budesonide for a year now and have lots more bad days than good. I am also on Colesevelam for binding bile acid and that does help but not all the time and I’m on the maximum dose!
Back in March I had 2 months of absolutely no symptoms and it felt amazing, I was eating whatever I wanted and I was only on 3mg budesonide a day so assuming this is the first time I was in remission?
It’s now time for me to look at my diet as I am miserable and really want to get better, I’m getting married next yet and can’t imagine have 10 bouts of d the morning of my wedding day! I eat out a lot which is an issue but I know my diet isn’t great anyway.
I am coeliac and have been on a strict gluten free diet for 5 years now. I usually have gluten free bread and dairy free spread for breakfast, Tuna or egg salad for lunch and then usually have meat with veg or pasta or chips for dinner. I have a serious sweet tooth and do snack on fruit and gluten free cakes etc throughout the day.
I looked at the recovery board regarding where to start
And it was quite overwhelming. I’m wondering if you can tell me what I should do first? I can only assume the dairy and sugar that I eat is not going to help me recover?
Thanks in advance, I’m so thankful for this website as my gastro guy wants to put me on other medication and I don’t want to be on medication my whole life as I’m only 28!
Ali
Re: What should I eat? Ideas?
Hello Ali,
I'm really not qualified to give any advice, but I have to say the restrictive diet has helped me considerably. It's tedious but the results are worth it. I did not go the Budesonide route so I can't speak to that. Once I stopped eating all the things that caused a reaction the persistent watery diarrhea ceased. I'm still not in remission (I don't think) but I only go once or twice a day and it's formed BM's. I think it is absolutely imperative that you stop ingesting the foods that cause an immune reaction.
Just two things that I've experienced:
"Gluten Free" is not gluten free enough. Also, as many on this site will tell you, there's lots of other ingredients in the gluten free products that will cause problems. And be skeptical of the "Try this for healing your gut" advice - it's what you are eating that's causing the problem, not what you are not eating.
If you have not done it already and you can afford it, the Enterolabs IgA stool tests can help out with knowing what you can and cannot eat. Wish I had done the testing when my flare started (instead of waiting 8 months), I would probably be much further along toward remission than I am now.
I wish you the best Ali.
John R.
I'm really not qualified to give any advice, but I have to say the restrictive diet has helped me considerably. It's tedious but the results are worth it. I did not go the Budesonide route so I can't speak to that. Once I stopped eating all the things that caused a reaction the persistent watery diarrhea ceased. I'm still not in remission (I don't think) but I only go once or twice a day and it's formed BM's. I think it is absolutely imperative that you stop ingesting the foods that cause an immune reaction.
Just two things that I've experienced:
"Gluten Free" is not gluten free enough. Also, as many on this site will tell you, there's lots of other ingredients in the gluten free products that will cause problems. And be skeptical of the "Try this for healing your gut" advice - it's what you are eating that's causing the problem, not what you are not eating.
If you have not done it already and you can afford it, the Enterolabs IgA stool tests can help out with knowing what you can and cannot eat. Wish I had done the testing when my flare started (instead of waiting 8 months), I would probably be much further along toward remission than I am now.
I wish you the best Ali.
John R.