Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Firstly, thank you sooo much for setting up this site. It's nice to see there is a place where we can discuss our disease. Although it is part of the IBD family, I'm finding most places cater only for ulcerated colitis or crohns disease e.g. telling to eat nuts and yoghurt.
I was diagnosed with microscopic colitis in May 2017. I have been in a flare up since about April. I have severely limited my diet to try and manage the symptoms naturally but since the end of June I began taking Budesonide. Unfortunately the discomfort is still a regular occurrence and I'm super grateful if I can get more than a day in a row without feeling uncomfortable. I'm interested in hearing from others on how long their episodes have lasted while treating them with diet moderation and medication?
My diet is mainly rice, rice milk, meat, fish, soft vegetables (some are ok, others are a bomb ),broth (mainly chicken) and bananas. I keep a food diary to help me identify if my system is not handling different foods well. I'm steering clear of alcohol, caffeine, fatty foods, gluten, dairy, spicy (heat). I do use a lot of spice flavourings in my cooking (e.g. cinnamon, Chinese five spice powder, cumin). I'm interested in hearing what other's tolerance levels are to spices.
One thing I do know is that I'm intolerant (in addition to the normal things) to coconut, nuts and corn, so that kills a lot of the GF options out there for me. I'm an avid cook so would be interested in swapping recipes that you think might suit my intolerances. Anyone up for chocolate custard made from rice milk and tapioca starch? It tastes just like the old chocolate puddings I could buy in the dairy cabinet when I was a kid.
I started getting my MC symptoms also in April and was diagnosed with LC in May. I've been on Budesonide since late May - first at 9 mg/day for a month, now at 6 mg/day. One thing that helped me immensely was a tip I got from Tex's book - I take all of my Budesonide at once first thing in the morning rather than space it out during the day. In the beginning I tried to vary my diet, but after hearing recommendations from others from this wonderful community, I have mainly been eating the same thing several times/day - white rice and protein (turkey, ground turkey, bison, ground beef, sometimes salmon). I don't use any spices when I cook other than salt and pepper. I believe it was Brandy, one of the members in the community, who suggested Pink Himalayan Salt which is pretty good. I am starting to add in some almond butter with rice cakes and a few overcooked vegetables at this point. I'm hoping that I'll be able to add more as time goes on.
I look forward also to hearing about your custard recipe :)
Welcome to our Internet family. It sounds as though you already understand a lot about the disease. Yes, you are correct, no one wants to officially claim this disease, so by golly we will just have to claim it ourselves.
Maximus74 wrote:I'm finding most places cater only for ulcerated colitis or crohns disease e.g. telling to eat nuts and yoghurt.
They're nuts to recommend yoghurt for any IBD. Most IBD patients are sensitive to casein, which is found in all dairy products, especially yoghurt.
Budesonide can help to mask the symptoms for some patients (it doesn't work for everyone), but as you have found, diet changes to totally avoid certain inflammatory foods is the key to controlling the inflammation (and the symptoms). I don't claim to be a cook, so I don't have any recipe suggestions, but I wanted to welcome you all the same. 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.
NB: as most members are USA based, the recipes will contain ingredients/products that are not readily available in Australia.
re the spices, when I was inflammed I could not use any other flavourings other than Salt. With time and healing I have been able to have small amounts occasionally. I have not been able to include them as a daily thing.
something to note, some spice/herb products/mixes etc can have gluten and soy in them. so double check the fine print of ingredients on the products.
hope this helps!
i note that you are in Adelaide, we have a member who is semi active here that is also from Adelaide. She is holidaying in Europe at the moment, but I will let her know that you have joined and when she returns I am sure she will make contact.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you for the quick replies and tips. I'll switch up my Budesonide and see if it makes a difference for me as well! Here's the custard recipe. I'll look to post some recipes soon.
Chocolate Custard
Ingredients:
7 tbsp tapioca flour
600ml rice milk
5 tbsp sugar (substitute for other sweetners as desired e.g. rice malt syrup)
vanilla bean (don't use the imitation stuff as it has a lot of additives)
1 tbsp raw cocoa (add less if you don't want it to be as strong)
Method:
1.Add dry ingredients to a microwave safe bowl.
2. Add a small amount of milk (50ml) and whisk in dry ingredients until there are no lumps.
3. Add remainder of milk and vanilla.
4. Whisk well.
5. Cook in a microwave in 2 minute batches until it has reached the desired consistency. Keep a close eye on it as when it thickens it may bubble over.
You can do this on the stove top if you prefer; however just remember to constantly whisk it.
Note: If you make vanilla custard (just leave out the cocoa), it will be off-white in colour bust still taste the same (no eggs to make it yellow).
Firstly, thank you sooo much for setting up this site. It's nice to see there is a place where we can discuss our disease. Although it is part of the IBD family, I'm finding most places cater only for ulcerated colitis or crohns disease e.g. telling to eat nuts and yoghurt.
I was diagnosed with microscopic colitis in May 2017. I have been in a flare up since about April. I have severely limited my diet to try and manage the symptoms naturally but since the end of June I began taking Budesonide. Unfortunately the discomfort is still a regular occurrence and I'm super grateful if I can get more than a day in a row without feeling uncomfortable. I'm interested in hearing from others on how long their episodes have lasted while treating them with diet moderation and medication?
My diet is mainly rice, rice milk, meat, fish, soft vegetables (some are ok, others are a bomb ),broth (mainly chicken) and bananas. I keep a food diary to help me identify if my system is not handling different foods well. I'm steering clear of alcohol, caffeine, fatty foods, gluten, dairy, spicy (heat). I do use a lot of spice flavourings in my cooking (e.g. cinnamon, Chinese five spice powder, cumin). I'm interested in hearing what other's tolerance levels are to spices.
One thing I do know is that I'm intolerant (in addition to the normal things) to coconut, nuts and corn, so that kills a lot of the GF options out there for me. I'm an avid cook so would be interested in swapping recipes that you think might suit my intolerances. Anyone up for chocolate custard made from rice milk and tapioca starch? It tastes just like the old chocolate puddings I could buy in the dairy cabinet when I was a kid.
Your custard looks good! I made a pumpkin mousse utilizing gelatin and it was fun to have a "safe" dessert.
Tapioca - there is a recipe for stromboli/calzone made from arrowroot starch (tapioca starch can be used interchangeably), and japanese / sweet potato (if you eat regular potatoes, a starchy variety would likely work), and salt. That's it. Could be filled with whatever you like (i.e., non-spicy/sauce-y things). I liked this because it is a way to eat bland food without it tasting bland. The inside is gooey and gives the illusion of cheese, which I miss greatly. If I have time, it's on the menu tonight.
If you can eat bananas, you might also try plantains. They work really well as a binder in recipes.
I have been using only diet and no meds except vitamins D3, K2, and the supplement qing dai (honestly not sure how much of an effect it has had) for flare that started at the end of June. I would say I am just now exiting it, as I have had two completely formed stools today and am cautiously optimistic. I did have a brief, exciting two week remission mid-August, but I blew it with stress and attempting to eat an egg.
How bad is your flare? Are you having cramps/pain? My GI informed me that cramps are only IBS, not MC...I was like, well, ok, but there's really not enough data for you to make that assertion!
It's kind of funny that so many gastroenterologists know so little about MC that they consider the symptoms of "IBS" (a disease that only exists in their minds, not in the real world) to be worse than the symptoms of MC.
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 wrote:It's kind of funny that so many gastroenterologists know so little about MC that they consider the symptoms of "IBS" (a disease that only exists in their minds, not in the real world) to be worse than the symptoms of MC.
Tex
It's amazing. There's a lot of circular logic involved. My doc also asserted that my bleeding was caused by irritation, not by MC...I just think...but MC was the cause of the irritation in the tissue and thus the cause of the bleeding! If A=B and B=C, then A=C.
Maximus, did your doc mention diet at all? I'm always curious.
I suspect that most physicians are trained in medical school to not look past "A" when analyzing symptoms. Every issue is treated as a separate event unless published proof of a connection actually exists. And of course not much proof regarding symptoms of MC (except for diarrhea) has ever been published.
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 wrote:It's kind of funny that so many gastroenterologists know so little about MC that they consider the symptoms of "IBS" (a disease that only exists in their minds, not in the real world) to be worse than the symptoms of MC.
Tex
It's amazing. There's a lot of circular logic involved. My doc also asserted that my bleeding was caused by irritation, not by MC...I just think...but MC was the cause of the irritation in the tissue and thus the cause of the bleeding! If A=B and B=C, then A=C.
Maximus, did your doc mention diet at all? I'm always curious.
I've just got back from leave so it's time to start refocusing on better defining my diagnosis. My GI gave me the diagnosis and was happy not to see me again, leaving treatment/support with the GP. It's clear he isn't sure what is going on, so I'm looking to get a referral to an alternate GI who has been recommended to me. Neither the GP or the GI recommended diet changes; it was my leading that opened up the conversation initially. I can only thank Tex and the team for the amazing resources they've given us here which led me in the right direction. My cramps are now just in my legs at night, strangely enough always in my left calf. My stomach cramps have subsided significantly (see below).
On a side note, my symptoms have subsided significantly. My symptoms were going crazy the week before I went away, probably exacerbated by stress (flight anxiety). We got to the village we were helping in Indonesia where I had arranged for a simple diet to be prepared for me (plain rice and plain chicken/fish). To my surprise, when we sat down to eat the entire meal was prepared (no simple diet dishes) as the meat(s) were all covered in sauces and marinades . I knew it was extremely disrespectful to not eat the feast that had been prepared for us in this poor village, so I ate and knew I'd deal with the consequences later. Miraculously, I didn't have any ramifications while we were in the village and had very little later on when we went to a more westernised area of Indonesia . I was eating soy, garlic, onions, chilli and who knows what else which I hadn't been able to eat previously. Since getting back I've gone back to my reduced diet; however I have been able to add a few things back which don't seem to be affecting me as badly as they were previously e.g. soy sauce.
I can't explain how it happened as I was stressed about eating the food on the first day as I expected to have a whammy of an attack afterwards, but I'm very grateful that it did.
Hello and thanks for all you do. I was just diagnosed myself in September and have been stalking the board to read the "newbie" stories. I have a really good GI who looked me up and down at my first visit and announced i have MC -- and he was right! That was after i was hospitalized for dehydration ( ).
Anyway I was on Questran for 2 weeks which worked like a charm. All was well until earlier this week. I'd stopped my tapazole to have my thyroid ablated and wham! right back in a flare now. I read, Tex, your posting somewhere where you said that any kind of stress on the body can flare up the MC, so that's giving me a little hope. Will take all i can get now since it's raining and pouring!
My GI recommended BRAT diet for flares (bananas, rice applesauce and toast, non-gluten), supplemented with non diary yogurt. Any other tips for flares appreciated.
Hope all are well,
Suzanne (Gulfside)
Welcome to our Internet family. You seem to already have a good start on learning to control this disease.The BRAT diet is a good place to start, but you will need protein to heal. Something safe like turkey, lamb, venison, rabbit, duck, goose, pheasant, etc.
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.
Gabes mentioned me in an earlier post. I am from Adelaide as well...thus my profile name. I started symptoms at the end of 2011 but it took some time before diagnosis. At the moment I am doing okay. I have enough symptoms to remind me that I have this disease but not enough to encroach upon my life.
I live in the south of Adelaide. What about you?
‘I have decided to stick with love. Hate is too great a burden to bear.’ – Martin Luther King Jr
),broth (mainly chicken) and bananas. I keep a food diary to help me identify if my system is not handling different foods well. I'm steering clear of alcohol, caffeine, fatty foods, gluten, dairy, spicy (heat). I do use a lot of spice flavourings in my cooking (e.g. cinnamon, Chinese five spice powder, cumin). I'm interested in hearing what other's tolerance levels are to spices.
. I knew it was extremely disrespectful to not eat the feast that had been prepared for us in this poor village, so I ate and knew I'd deal with the consequences later. Miraculously, I didn't have any ramifications while we were in the village and had very little later on when we went to a more westernised area of Indonesia 
). 