MICROSCOPIC COLITIS SUPPORT

Ha! Love wet hen analogy. I don’t doubt there is some backbiting and hubris among those docs.

I went ahead and ordered the tests suggested. Once I know for certain what to avoid, I’ll feel more confident about this diet.

Thanks again and I’ll let you know how things turn out. I’m also looking forward to reading your book!

Hi all,

I have been so moved and inspired by this site since I found it about 3 weeks ago. I have had MC for some time and tried to treat it with both eastern and western medicine and for many many years have been in deep denial about it -- just carrying on with life as if I didn't have a problem. Over the past two years I have worked with a doctor to try to get my D under control and gain back my strength. As you all have described here, nothing helped, and about three months ago I ended my final trial with Budesonide. The result was that my symptoms are now much worse than two years ago.

So I got on line again and found this fantastic support group. I immediately went on the Recovery Diet -- stage one, and am doing pretty well on it -- feeling like I have a little more energy -- the D has not gone away but also is not worse and some days, definitely better, i.e. less rushes to the bathroom. And I don't have any cramping -- sometimes just feel inflamed but so much better.

I know I will be on this for a while, and am prepared to do so. My Enterolab test just arrived and I will send that off tomorrow.

My question is how will I know when it is time to move from Stage one of the recovery diet to Stage two?

Thanks so much. I spend lots of time reading these posts and have been brought to tears knowing that I am not alone in this battle and that others have had fantastic success with it.

- Jillian

My question is how will I know when it is time to move from Stage one of the recovery diet to Stage two?

my weird reply to this is - when you no longer think about new ingredients then that is the time to expand... does this make sense?
ie when you are in the flow of stage 1 and doing well. (sounds harsh but this means that your brain, tastebuds etc have made the adjustment to bland low infalmmation eating plan) the other aspect to this is listen to your body.

there is no fixed scientific timeline - each persons MC healing journey is different.
you should only move on when the timing is right for you, minimal symptoms - not just gut wise but joint pain, brain fog etc. the longer you stay on stage one, the more you are optimising good healing. when you have been on good amounts of Vit D3 and magnesium for a couple of months

and pleased you are enjoying the group, the posts, the companionship that you are not alone, and the hope and motivation that comes from seeing others journeys.
happy healing

Hi Jillian,

Welcome to our Internet family. It sounds as though you are well on your way to recovery. Good for you. It took me about a year and a half on a very restricted diet before I was able to successfully add any foods back into my diet. Everyone is different.

Again, welcome aboard, and please feel free to ask anything.

Tex

Hi Everyone, I joined the forum yesterday. I'm all the way from South Africa. 41 years old and have Mc for about 5 years. I'm struggling with a bad flare up at the moment and have really bad D. I'm so glad a found this site. For the past 5 years I have felt very alone on this journey.

I see the forum strongly recommends Gluten Free. I am committed to making this change in my diet.

I have a few questions...

1. My GI advised that I follow the FODMAP's diet. Has anyone had any experience with this diet and any success stories? Its a diet that has been developed in Australia at Monash Univ
2. Do I go completely dairy free or do I go lactose free?
3. Is cheese allowed (I love cheese)
4. Whats the thinking about Sugar? ie) Sugar in my tea?
5. I see I must cook my veggies very well and limit my fruit intake to Banana's. Is there any other fruit I can eat? Cooked and skinned apples I see are ok. What about berries? Grapes?
6. I assume Gluten free bread is OK, is this correct?

Are there any other quick guidelines that I could follow?

Thanks in advance for the advice. I'm reading all the posts with interest.

Gavin

Hi Gavin,

Welcome aboard. I'll attempt to answer your questions. First off, be sure that your flare isn't being caused by one of the medications that can cause MC, such as antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, tricyclic antidepressants, bisphosphonates, ACE inhibitors, statins, beta blockers, etc. If so, avoiding it may be all that you need to do. If that's not the case though, welcome to the family of folks who have MC that's perpetuated by food sensitivities.

Gavin wrote:1. My GI advised that I follow the FODMAP's diet. Has anyone had any experience with this diet and any success stories? Its a diet that has been developed in Australia at Monash Univ

I've always followed my own particular diet, but the FODMAP diet works for some people.

Gavin wrote:2. Do I go completely dairy free or do I go lactose free?

Everyone who has an inflamed intestine has lactose intolerance (even the flu causes lactose intolerance). But MC causes the immune system to produce antibodies against casein for most MC patients. Consequently, you are probably casein intolerant, so the safest thing to do is to avoid it while recovering and then test it out after you are in remission. (If you are sensitive to it and you don't avoid it, you will never get to remission).

Gavin wrote:3. Is cheese allowed (I love cheese)

Aged cheese is loaded with casein. Soft cheeses are loaded with lactose.

Gavin wrote:4. Whats the thinking about Sugar? ie) Sugar in my tea?

Sugar in your tea is fine, but minimize the total amount in your diet because we can only digest small amounts, so the rest is not digested and bacteria ferment it when it gets to the colon, causing gas, bloating, and diarrhea.

Gavin wrote:5. I see I must cook my veggies very well and limit my fruit intake to Banana's. Is there any other fruit I can eat? Cooked and skinned apples I see are ok. What about berries? Grapes?

Small amounts of well-cooked fruit is OK. Large amounts cause problems with the fiber and the fructose. Fructose is difficult to digest and metabolize because it has to be metabolized by the liver, unlike other sugars.

Gavin wrote:6. I assume Gluten free bread is OK, is this correct?

Most commercial GF bread contains so many ingredients that one or more of those ingredients is likely to cause problems. Many patients can tolerate commercial GF bread, but you'll heal much faster if you avoid it during recovery, then you can try to find a brand that works for you later.

Gavin wrote:Are there any other quick guidelines that I could follow?

In general, to recover the fastest (and surest), we do best by avoiding all commercially-processed foods. Most of us cook from scratch, using whole, safe foods. If you have to eat out, take a pill such as "Glutenease" to help with digestion in case the restaurant serves you a cross-contaminated meal. But don't expect such a product to allow you to eat gluten, because your intestines will never heal if you do.

You're more than welcome. Again, welcome aboard, and please feel free to ask anything.

Tex

Just started this forum today. Very complex, though interesting. Being a newbie, I started by looking at what helps relieve symptoms, foods to eat and avoid.
I don't like using meats for protein. I was hoping I could eat a mostly plant proteins and grain, and vegetables, etc.
I can't afford Budesonide, so that's out of the question. I have diarrhea and constipation sometimes together. Frustrating!
Please let me know the best area on this forum that can help! Thank you! I don't have an image yet, and I'm not that computer savvy!
annaluigia

welcome annalgugia

as you have diarrhea and constipation i offer the following suggestions
- take good quality Vit D3 and magnesium - these will help with these issues
- in early stages of healing confirming safe protein sources may be tricky (but not impossible) hopefully some of the vegetarian members will chime in
- for now avoid the grains, if having vegetables, make them well cooked, bland, only have a few (3-4) each meal.

some good areas to do some reading..
- members success stories area
- use the search function to look for conversations on plant / vegetarian etc

hope this helps.

Thank you for your reply Gabes-apg,
I am a bit overwhelmed, but I guess it's best to start in simple steps. I already take vitamin D, 50,000 units 1x per week, as prescribed. Last blood test said I was ok. I don't know how much magnesium to take, so should I ask the pharmacist? The doctor never mentioned it. Sigh.
Thanksgiving is next Thursday so there will be tons of food. Maybe I should stick to veggies, if I feel well enough to go! Is rice ok? Brown? White?
Sounds like I should take it slow on my stomach, etc. What type of fats are ok to cook with?
I drink lactose free milk, usually only in cereal. Not good I guess. So much to learn!
Thanks again for this wonderful website. It's a comfort to know I'm not alone, but I do feel bad for all those out there going through this!
Anna

stop, breathe and yes take this one step at a time

the weekly dose of Vit d you are taking is the D2 form, and the body still has to do a bit of work to convert it into the useable form of D3.
we encourage people to take daily dose of Vit D3
along with the magnesium question if you read the thread in this guidelines section dedicated to vit d and magnesium what brands, what dosage etc will be answered

rice - choose low fibre option white
cooking oils - this is all mentioned in the first post of this stage one eating plan thread coconut oil, good quality olive oil, good quality avocado oil.
lactose free milk still has caesin which is still highly inflammatory to the gut - again in the original post of this thread safe milk replacement options are suggested

re socialising - good options are - eat before you go, and take your own safe meals with you. yes there will be questions and social pressure. MC is for life, a key part of enjoying life is sticking to our safe eating and lifestyle plan.
for most of us, spending 2-3 days in the bathroom with D or painful C is not worth it so we stick to our safe eating plan as much as possible.
there are LOADS of safe eating options for socialising in this forum. and there are also posts with discussion points /suggested answers etc when people question what you are doing. I will do my best to find these and put them towards the top of the main message board for you..

anna, a couple of recent posts about socialising etc are on the first page (top 20 posts) of the main message board for you

Thanks, Gabes! I never knew this disease was so complicated to cure or even put in remission.
I know I've definitely not eaten right at all! And I repeat, doctors are no help! My gastroenterologist never offered a diet plan, I had to ask, and I think it's the one mentioned in many posts..can't recall off hand.
I'll have to study the different sections and figure out how I'm going to turn my life around. I don't know how so many found the courage to help themselves. I live alone and rarely cook for myself. I know that's bad. Kinda makes me feel lonelier.
I SO appreciate your help, and I'm gonna try to proceed as you advised.
Be well,
Anna

Anna
being alone (i have lived alone for past 15 years) has its advantages in MC world

we only have to cook and look after ourselves, we dont have to share kitchen, bathroom with others, we can follow routine that suits us best! rest when we want to rest etc. embrace it as an advantage.

Many here have come with limited cooking skills, embraced the suggestions and got their lives back and enjoy cooking...

Since I can’t seem to print this GREAT information, I wrote down Gabe’s stage one eating plan and meal plan ideas. I was investigating SCD, FODMAP AND Paleo but confused myself with too much information. I prefer simple and specific to LC. Thank you Gabes for the stage one plan.

I also read that NYS does not allow Enterolab testing. I wonder why they are so invested in putting up this roadblock?
Thank you Tex and all who have dedicated so much time to help others,
Kathryn

Hi Kathryn,

You should be able to print this info by selecting "Print" under the "File" tab in your browser main menu bar.

Yes, physicians in New York and Maryland consider ordering tests their turf. Apparently they prefer that their patients remain ignorant.

Thank you for the kind words, you're most welcome.

Tex