I'm a Newby

[laine]

Was just diagnosed today with microscopic colitis, LC. Am very concerned about my future and all I'm reading about the disease. Meet with my doctor Thursday AM to discuss treatment. At this point I don't know how my day to day life will change. My eating habits have always been healthy but I've never been tested for food allergies. I'm planning a month-long vacation (To Europe) in April and now have serious worries. I'm so happy I found this forum and can tell already I will benefit greatly from joining!
Laine

[harma]

Hello Laine, welcome to these great internet family. Sorry you have MC and I understand very well you worry about your future and your trip to Europe. But there is hope. First of all, there is medication that can control this disease, most people (that use medication) use entocort and seems to work well. In some cases it doesn't work or the side effect are to bad. Than other medication also can help. Medication can often be a solution for a short term relieve.

A lof of us here control our disease with diet. A gluten, diary and in about 50% of the cases also soy free. There is a lot of information on diet on this board.

The doctor's knowledge about MC is limited. It does not reach any further than setting a diagnose and treatment plan is medication and "learn to live with it".

That's why this board is so great, here you will find ton's of information on MC.

Take a look around and feel free to ask as many questions as you want.

Harma

[mbeezie]

Laine,

Welcome! As Harma mentioned, most of us have found that diet changes are necessary. Gluten, dairy and soy are the main culprits, but some of us have to restrict more than that. I know you and your doctor haven't talked about treatment yet, but don't be surprised if they tell you that diet changes are not needed. We've all been told that but since we live with this disease we know it works.

Travel is possible with MC, but may be more difficult in the beginning. If your doctor puts you on Entocort it may control your symptoms enough for you to manage travel. If you find out you react to gluten etc you could do homeowrk ahead of time on finding restaurants to accomodate you.

Welcome aboard! Surf the site as this is the most comprehensive library of info on MC you will find.

Mary Beth

[TooManyHats]

Welcome! Read, read, read here. You will find information that your doctor never gives you. I hope that your doctor is able to give you medication that will help you to stabilize, but diet changes are very necessary.

[Martha]

, Laine!

You will find lots of good information and encouragement here.

I don't have anything to add to what the others have said. Entocort is a real help to a lot of people (me included!), but diet changes are the best for long-term management of MC.

I took Entocort for 3 months, and it controlled the D completely. But after I stopped it, the D came back, just as my doctor said it would. At that time I hadn't found this group yet, and didn't know that diet had anything to do with MC. Now I am eating gluten, dairy, and soy free. I also found that eating coconut--I eat unsweetened flaked coconut-- helped with the D. Not everyone finds coconut helpful, but it is used in some Pacific islands as a D remedy.

There's lots of read on this forum, and feel free to ask questions.

[maestraz]

Hello Laine,
I am new to this community too. I was just diagnosed with LC last week and am overwhelmed by what I may have to learn about it. I was glad to find this resource.

I am completely flipping out over this; I am newly retired, with plans to travel and enjoy my time, and this is putting a big cramp (pun intended) in my life. My husband and I enjoy good food (and eat healthy in all sorts of ways already), and a big part of our social life/entertaining is around cooking and dining out with friends. Needless to say, I am concerned about the implications not just for me but for him--will my need to manage this disease impact his life as well?

Since diagnosis, I'm on Entocort for a month until an end of March meeting with my GI to follow up. In the meantime, have started a food diary in an attempt to identify triggers. I am assuming that at some point I'll need testing for allergies.

Good luck to us!

[Joefnh]

Hello Laine from New Hampshire. You've already received a good overview of MC and all I can do is encourage you to not be worried.

This will take some changes on your part in your diet, but that coupled with meds as needed MC can be managed pretty well. Certainly listen to your GI for any medications that may be needed and talk to the folks here about dietary changes that really are probably more important than and medications.

Feel free to ask anything

--Joe

[Gloria]

WELCOME LAINE AND SUZE!!!

I can't add anything to what others have written. You will find answers to many of your questions by reading as much as you can on this board. We are here to help you. Don't hesitate to ask us questions.

Gloria

[ant]

Dear Laine

Welcome from Hong Kong. Travel is possible with MC but it takes planning. I stock up with rice cakes, ham and bananas for plane journeys since (pre-prepared) airplane food has invariably got a no-no ingredient in it. Once you have landed I carry a "too the chef" card with me. In case you want to use it as a template here it is:

To The Chef…. I suffer from Celiac & Microscopic Colitis causing multiple food intolerances.
CAN EAT:
• (Unprocessed) meat, fish, shellfish - grilled, roasted, fried or baked.
• Rice – boiled, steamed or fried in olive oil, rice noodles. Rice or water chestnut flour.
• Salt, pepper, herbs, garlic, onion, dried coconut.
• Vinegar (EXCEPT NO malt vinegar).
• Olive oil (not other vegetable oils), pure coconut oil, pure balsamic oil (not artificially coloured since that contains gluten).
• Well-cooked peeled vegetables (EXCEPT NO: bean, pea, tomato, potato, bell pepper and corn).
• Mushroom, banana, olive, avocado, nuts (EXCEPT NO peanuts and cashew nuts), cooked fruit.
• Wine, spirits, coconut milk (no guar gum added), green tea, pure coco, black coffee, tea.
CAN EAT IN SMALL AMOUNTS:
• Cane Sugar, glucose, fructose, pure maple syrup, honey, raw fruit.
CANNOT EAT
• Gluten (and similar) – wheat, rye, oat, corn, semolina/tapioca – that is in flour, bread, cake, biscuit, wheat pasta, cuscus, tapioca, beer, malt vinegar.
• Soy, Soya/Tofu, Soy lechtin, Worcester source or MSG.
• Dairy – milk, cream, butter, cheese.
• Bean, pea, guar gum, peanut or cashew nut
• Egg
• Potato, tomato, eggplant, bell pepper
• Raw vegetables (e.g. salad)
• Cashew nut and peanut.
• High fructose corn syrup, aspartame.
• Vegetable oils – except Olive Oil, which is fine.

I am self diagnosed Celiac, but it is well recognized and gets peoples attention.

Best wishes on your journey to Europe and on your other journey to remission, ant

[tex]

Hi Laine,

Welcome to the group. I hope that you can find the solutions you need, here.

We learn from each other's experiences, here, and together, we know more about living with, and treating this disease, than all the GI specialists in the world, put together, so if you can't find the information you need, please ask.

Again, welcome aboard.

Tex (Wayne)

[Kari]

Laine and Suze to our internet family of caring and sharing. We are all here to support each other on the MC journey and learn from each other about MC management. There is over 10 years of accumulated wisdom and shared experiences here - so take your time, and read lots - you'll find answers to most of your questions here, and if not, just ask, and people will respond.

I had MC for 10 years with constant D., before finding out about the diet connection last summer. I have not used meds, other than pepto and imodium when needed, and am definitely on the road to recovery with diet changes. It doesn't happen overnight, but with patience and diligence, you can start to feel much better and get your lives back.

Best of luck to you - look forward to hearing more from you as you embark on your individual treatment plans.

Love,
Kari

[Gabes-Apg]

welcome Laine

living with MC and being well, may/will take some changes, but they are not all bad.

Travel with MC is very possible, it takes planning and organisiation. I was diagnosed 14 months ago, in June 2010 i travelled from Australia to France for 3 weeks for work. The transit each way was 36 hours (i even got to meet Ant in Hong Kong along the way) having my own food and drink on the plane was a definate requirement (i have multiple intolerances)
With some research via the internet before i went (health food shops that would have basics for me), and the chef card from Ant translated into french was vital. I only got glutened twice and had mild reactions.
I was working 12-14 hour days so it was not a holiday.

MC can be quite individual, in what triggers reactions, and the myraid of reactions/symptoms that can occur, treatment wise what works for some may not work for others so my motto is, there is no right way or wrong way, there is your way.

there are not mistakes, just learnings.

take care

Gabes

[EastWestGirl]

Hi Laine,

I am brand new to this too. I was diagnosed last October with LC and my doctor said I could go on meds but never mentioned anything about diet. I tested negative for celiac blood tests at the time.

I found this forum and how diet changes could help me. I was previously diagnosed as being allergic to casein and egg whites so I saw it as just "one more thing" that could help me feel better.

Two days after going completely gluten free my D was completely resolved.

I told my GI of this and he said that it is likely that I am a sub-clinical celiac (I guess he does not believe that LC can respond to a diet devoid of gluten?)

I have this forum to thank for my recovery.

I have only had one accident of eating wheat since then...a few hours later I had very a very bloated/distended stomach and the next day the D was back. That's when I phoned the restaurant I had eaten at and found that the waiter from the previous night had been misinformed about my food not having flour in it.

So, clearly this is going to be a lifelong change for me. Perhaps for you, too?

The best thing I can suggest is to learn to find lots of good substitutes for the things you feel you will miss...over time they will seem normal to you. :)

Linda

[Gloria]

WELCOME LINDA!

What a terrific report for your first post! Thank you for sharing with us.

Gloria

[tex]

Hi Linda,

I see this is your first post, so welcome to the board. It's great to see that you didn't hesitate to grab the bull by the horns, and wrestle him to the ground. You've made one of the shortest, (fastest), journeys to remission ever recorded on this board. Good for you.

Again, welcome aboard. I hope your remission lasts forever.

Tex (Wayne)