Diagnosed Today

khick · Post by **khick** » Fri Feb 18, 2011 2:23 pm

I received news today that I have Microscopic Colitis. On one hand I feel relief. I was beginning to think I was crazy. In my opinion the crazy diarrhea I have been having is not as bad as the extreme fatigue, bad joint pain and itchy skin... It has affected every aspect of my life quite frankly I feel like I have not been living just exsisting. I am grateful that my doctor decided to do a colonoscopy after 1 month of symptoms. I am am a 34 year old female so I am sure a lot of doctors would have put off the testing. I am starting an 8 week steroid treatment today and this scares me. Even worse is the thought of not being able to eat ANYTHING!!!!!!! How do you guys do it? Is joint pain and fatigue common with this disease? Does the diet help with these symptoms? Also, can I drink alcohol is that gone with wind as well? What should my first step be?? I am scared and sad and would appreciate any of your advice.

Joefnh · Post by **Joefnh** » Fri Feb 18, 2011 2:50 pm

Hi Khick and welcome from NH.

First I'm sorry your here for this reason, but that good news is you have found the best resource and group of people which share this condition with you.

Yes fatigue and joint pain are very common with MC. I had aches and pains for 10 years with fatigue and occasional unexplained D. It was not until last March when things went nuts with almost constant D sis I have a colonoscopy and the biopsies showed Collagenous Colitis a form of MC (and also Crohns in my case)

Don't worry about the steroids now, they will help calm things down, a good number of us have taken them as well. Are you taking prednisone or Entocort or another type steroid?

Whats next and more important than the meds is the issue of diet.

MC tends to be sensitive to 3 main areas of foods:

1.) Gluten or wheat s the main one. Anything with wheat or wheat flour in it is a good place to start eliminating

2.) Soy or any soy product for many of use causes issues. While just about everyone here reacts to wheat / gluten, about 30 - 0 % of us also react to soy. In my case I think I react to soy more than gluten.

3.) Dairy or any dairy product. I am not sure of the percentage but is seems like about 33% of us react to dairy as well

4.) Raw fruit or veggies. Raw fruits or veggies irritate the lining of the GI system and cause pain and D. This is more of a mechanical issue as opposed to an intolerance. Well cooked fruits or veggies seem to be fine for most here.

I would say the sooner you start looking at at least the gluten and the soy, the sooner you will start feeling better. The fatigue and pain described are often reactions to soy and gluten. If I end up having any gluten or soy, within 30 minutes my joints hurt and I do get quite tired. This is followed by days of D.

It does take most of us with diet and meds about 3 weeks to start feeling better, so patience is another key ingredient to getting well again

Again welcome to the group and feel free to ask anything at all.

--Joe

Mags · Post by **Mags** » Fri Feb 18, 2011 2:53 pm

Welcome, welcome--

I was diagnosed at 35, so I was right where you are now. This forum is the best place you can be! The support and help you will find here will comfort you to no end.

Only in my opinion:

Step one:

Cut out dairy, soy, and gluten. Make sure you are taking the proper supplements to replace things you are not absorbing, like B-complex, fish oil, and other things.

Many supplements contain soy. I get mine from genuinehealth.com but others on this forum will follow up with advice for you, including where they get their supplements from.

Step two:

Don't be scared. You have come to the right place. The knowledge on this forum is literally breathtaking, and I am so glad you found it so quickly. There are so many people here who have so much more to tell you than I do. I just wanted to get back to you ASAP, as you are so close in age to myself when I got diagnosed.

Love,

Mags

JoAnn · Post by **JoAnn** » Fri Feb 18, 2011 3:01 pm

You've found the right place for hope and healing. You are fortunate to have been diagnosed so quickly. If the steroid you're worried about is Entocort, don't worry. For a lot of us it is the best treatment with few side effects. Several people here have been on it for years. I'm in remission now and got there by using Entocort and diet changes. Some people can't tolerate Entocort, but you'll probably know quickly if it affects you negatively. Even though I'm currently not on it, I keep it on hand in case of a flare or for travel. Pepto bismol and immodium can also help you along on days when you need a little extra help. It doesn't affect the Entocort.
Take a deep breath and realize this is going to be a journey, but you will regain your health by figuring out your food sensitivities and using the right medications.
BTW, your doctors will probably tell you diet has nothing to do with this, but they are wrong. Trust the collective wisdom of this board and you will get a handle on this. As soon as I found this board over 2 years ago, I got tested through Enterolabs based on their advice. I was shocked to find I was gluten, dairy, soy, and egg intolerant. I began the learning process of restructuring my diet and making changes. At first it was so overwhelming and foreign to me, but now it is second nature. I had to weed out other food intolerances along the way as I healed. Some members here have also used a form of testing called MRT. There is a separate category for this on this board. You can find it in the different forum selections.
Try to relax and believe you'll find your way through this because you will as you sort our the treatments best for you. Others will be along with their advice. This is the place to find support and help and ask any questions you want. We've heard it all

Love JoAnn

irisheyes13 · Post by **irisheyes13** » Fri Feb 18, 2011 3:21 pm

Hi Khick,

You've most definitely come to the right place. I'm fairly new around here too but have found the people here to be most helpful and so compassionate.

I can't really add much to all the great suggestions but you did mention alcohol and it would be my recommendation to avoid it for the time being. At least until you've given your body a chance to heal with the combination of meds and dietary changes.

Try to not get too overwhelmed by it all and know that there is light at the end of the tunnel and you will get better. Take some time to search through the posts here. There is an incredible amount of information to take in but it's worth it.

MBombardier · Post by **MBombardier** » Fri Feb 18, 2011 3:34 pm

Welcome to our internet family!! You've gotten lots of good advice already.

I want to add that many (perhaps most) of us can tolerate wine or other alcohol. Beer is definitely out, though, as barley is a source of gluten.

Welcome again!

khick · Post by **khick** » Fri Feb 18, 2011 10:17 pm

Thank you so much for your responses. I am amazed that my doctor prescribed the entocort and told me to come back in 8 weeks, not one word about diet??? Do most on this forum have a severe case or do most people with MC have a gluten Intolerance?

Post by **tex** » Fri Feb 18, 2011 10:48 pm

Hi Khick,

Welcome to the board. The reason your GI doc didn't mention diet, is because most GI docs don't realize that diet is the key to controlling the inflammation that causes MC, and they will argue until they are blue in the face, that diet has nothing to do with the disease. If your doc feels that way, then there is not much point in arguing with her or him - that is the way they are trained in med school, and re-educating them is usually not an easy task.

As proof that it works, many of us here are in remission by diet alone, (we've never taken any meds to treat it), and many here who were not able to achieve remission by means of medications alone, have been able to do so by modifying their diet.

The bad news is that even if you are able to achieve remission with Entocort, without diet changes, a week or so after the Entocort treatment ends, you will relapse, because the Entocort only suppresses the inflammation - it does not prevent if from developing in the first place. The secret to preventing additional inflammation from developing, is by eliminating the foods that cause it, in the first place.

There is really no such thing as a "mild" case of MC, and contrary to what most GI docs incorrectly assume, the lymphocyte count noted in the pathologist's report has no correlation with the severity of symptoms, for anyone with MC. Many GI docs believe that a low lymphocytic infiltration count indicates a "mild" case of MC, but that is absolutely incorrect.

According to Dr. Fine's research, approximately 65 % of MC patients are gluten-sensitive, but among the members of this board, the percentage is much higher than that - probably over 95 %.

Again, welcome aboard.

Tex

TooManyHats · Post by **TooManyHats** » Sat Feb 19, 2011 12:12 am

I'm giving my body a chance to heal with medications, but I am not abandoning my elimination of gluten, dairy, and soy. Diet is key and I intend to keep at it. Initially, I was reacting to everything. I have had the 1st peaceful evening in a week so far.

natythingycolbery · Post by **natythingycolbery** » Sat Feb 19, 2011 10:52 am

Hello and welcome to the thread, I can't add much else to what has been said, but just wanted to welcome you to our PP family!

hoosier1 · Post by **hoosier1** » Sat Feb 19, 2011 11:35 am

Hi Khick,

I had mixed emotions about my diagnosis too. It took about 5 years for someone to nail it down. And when my wife called to tell me it was MC, she was crying because at least we knew what we were dealing with.

I can only echo the comments from those we responded before me. You will get better but you have some homework and dietary issues to work on first. But it is doable. I am living proof. Just ask everyone about home much I used to whine :)

Rich

Gloria · Post by **Gloria** » Sat Feb 19, 2011 3:02 pm

Welcome Khick!!

You have found the best site on the web for Microscopic Colitis support. I'm sure you are reading and absorbing as much information as you can. If you follow the recommendations on this board, you will get better and you will get your life back.

Looking forward to getting to know you better!

Gloria

khick · Post by **khick** » Sat Feb 19, 2011 3:46 pm

Thank you all very much I truly appreciate all of you. I am trying to go gluten free so far it equals starving... The good news is I live in Louisiana so there is lots of good seafood (please let seafood be ok!!!) I have two young kids so it is a little difficult to stay gluten free at basketball games and birthday parties I guess I will have to start packing snacks for myself. The reaction of my family has been suprising I feel as if they think this is no big deal & I shouldn't change my diet unless the doctor reccomends it. Since all of you have such similar symptoms as me I am going to trust you!

Mags · Post by **Mags** » Sat Feb 19, 2011 5:19 pm

It can be really hard to educate your family. I have found that some of my family, including my mom, just can't deal with it. However, other members of my family have celiac disease, so they understand much better.

As for going gluten-free, Udi's gluten free bakery has been my lifesaver. Their bread tastes like bread, they make blueberry, lemon, and chocolate muffins that taste real & delicious, and their bagels are really good. If you can't find them in the grocery store, you can order them online.

Please don't give up on your family, though. It can be a real shock when someone they count on to always be there and be strong gets diagnosed with something like this. It is hard for them to realize that the doctors really don't know best and it may take a long time for them to "get it".

In the meantime, you have found the most loving, supportive, knowledgeable group of people possible, and everyone on this forum is here for you all the time.

Love,

Mags

Post by **tex** » Sat Feb 19, 2011 7:15 pm

Khick wrote:The reaction of my family has been suprising I feel as if they think this is no big deal & I shouldn't change my diet unless the doctor reccomends it.

Please don't feel like the Lone Ranger - virtually all of us face that same problem with our family and friends at home. That's why we consider ourselves sort of an internet family, here - we all understand what everyone here is going through every day, in living with this debilitating disease. The problem is that to our family and friends, we don't look sick, and even our GI docs consider MC to be just a "nuisance" disease, with a benign course.

Tex