Newby LC Diagnosis.

[Lovinlivin8]

Hello! This is my first post. I found your site last week and promptly bought the Microscopic Colitis book.

I am looking for help understanding what I have and how to live with it, and what to do to begin to feel better.

My GI, that did my colonoscopy, is less than helpful in giving information about my disease (LC) and how to live with it. He tested me for Celiac and it came back negative. So, he first put me on Budesonide for 1 mo then tapered for 1 month. At the end of the taper, the D returned with the sick feeling. I controlled the diarrhea with Immodium for a week, and tried to find some help on the internet. When I called GI's office for help with possible diet information, I was told that this type of colitis is usually not helped with diet changes. And that I needed to be on some medication to control it. He then prescribed Lialda for 4-6 months. At this point, I got off the NSAID's. The symptoms then changed to constipation, bloating, nausea, exhaustion, crankiness/moodiness/emotional, gas, gurgling, and just feeling yukky. The last two days, I have begun to track my foods with a food tracker to see if there is a connection to what I eat. I am SURE it is related. Once after eating Pizza, my stomach was so bloated that the top of my diaphragm area was rock hard and so painful. I could only get relief by laying flat. When calling GI's office, the nurse said "that's strange" HA! The Dr. replied, if you think it's the Lialda, we can stop that and try another drug. I said, I'll wait and see. The bloating went away and has not been that bad, although I still bloat after every meal. I'm doing something wrong...OR this is what living with Lymphocytic Colitis feels like. How depressing!!

Before the Colitis, a few years ago, I had been diagnosed with high cholesterol, and put on Zocor. After some bad side effects, I took myself off them and changed my diet to a Plant Based eating lifestyle. I lost weight, cholesterol lowered and I felt good. Except for joint pain, and moodiness. A new DR then prescribed Nabumatone (NSAID) and Gabapentin for the arthritis pain. They helped greatly, from November to January.

Then a meal at a local restaurant's salad bar, OR the sauerkraut and brats from a local meat market...(we may never know) brought on the initial bout of constant watery diarrhea which took me to the GI for colonoscopy and diagnosis.
Lymphocytic Colitis. My GI told me to research it on Google before coming in to discuss it so I'd know what I was dealing with.
He told me nothing helpful for lifestyle change, except take this medicine, and eat what ever you want.

So, here I am. Reading your book and trying to decide if I should get tested for sensitivities or just try elimination. I am so used to eating grains and high fiber foods, I don't know what to eat! So I just eat what I have and live with the sickness. Does everyone with MC also have gluten and dairy sensitivity?

What I know is my experience, so I am desperately looking for information on how to heal and live with this apparently life long condition.
I will be reading the posts and trying to figure this thing out. I'd appreciate any support or information you all have. Gratefully...
Tam

[JLH]

Tam

For your doctor. He is not alone in his thinking about food having nothing to do with MC, sadly. Read Tex's tag line.......

I have had high cholesterol and have been on statin drugs. Now that I can't eat much of anything, I am eating a lot of meat. My cholesterol is OK! The only thing I can attribute it to is my spray magnesium (magnesium is a laxative for use in pill form). I may be totally off base with this, I just don't know.

[tex]

Hi Tam,

Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it. Your doctor obviously doesn't understand LC, because it is definitely associated with food sensitivities, and removing all of those food sensitivities from our diet is the key to remission. All that the medications can do is to mask the symptoms temporarily. As soon as the meds are discontinued, the symptoms will return, because the foods that are causing our immune system to produce antibodies, will immediately reignite the inflammation as long as they remain in the diet.

So yes, virtually all of us who have MC are very sensitive to gluten, despite negative celiac tests — the celiac tests that doctors use are worthless for detecting the type of non-celiac gluten sensitivity that we have. And yes, most of us are sensitive to all dairy products and soy. Many of us are also sensitive to eggs, and some of us have many other food sensitivities.

An elimination diet can be used, if you are patient, and dedicated, and very thorough with your methods. Most of us use the stool tests offered by EnteroLab in order to save time and minimize frustration in determining our main food sensitivities. Their tests are the only food sensitivity tests in the world that are accurate and reliable.

Healing takes dedication and perseverance, and time, but unless we want to take powerful drugs for the rest of our life, diet changes are the only way to get our life back, so they are definitely worth the effort.

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

Tex

[Heady]

Welcome to our MC family . Sorry you've had such a poor experience with your GI but it is familiar to many of us. I found these wonderful folks April 1st. I have cut out all the typical trigger foods & have now been WD free for almost 2wks. I feel so much better. I was a bit overwhelmed by all the diet cuts but have adjusted well. You can do it too. Read through Tex's book. It explains a ton. The folks here are a wealth of experience. Keep in mind we all have an individual MC journey. The sooner you cut out the typical trigger foods the sooner your gut will begin the healing process.
Best wishes on your MC journey

[nerdhume]

I too was on high fiber and lots of fresh fruits & vegetables, preferably raw because that is what I believed to be healthy. Your story sounds very similar to mine. It will be hard to figure out which foods you are sensitive to. It seemed like it didn't matter what I ate. Then I found out after enterolab testing that was because I was sensitive to dairy, gluten, soy and eggs. After reading the labels I discovered everything I was eating was a problem.
I am just trying to sort it out and get my diet under control myself. Ordered Tex's book and hope to find more info I can use.
You can try to figure it out with a food journal or elimination diet, but having the tests done is lots quicker and easier.
This is a great support group, and truly a blessing for all of us, because absolutely nobody can understand this disease if they don't have it.

[Marcia K]

Hi, I was diagnosed with LC in 9/13. I was on Pepto Bismol for 8 weeks and since then have controlled it by diet alone. I researched LC while still on the Pepto and realized that I would have to drastically change my diet. I have eliminated most of the food items listed in the back of Tex's book from my diet and I am doing fine. My gastro told me not to change my diet at all....had I listened I would be taking medication. There were a few times when we ate out that the D returned and it was from something in the food that I didn't know was there. Check out the recipes on this site and scroll through the posts. It is a wonderful support group. If you think of everything that you can't eat it can be a downer, but I don't focus on that. Good luck on your journey. You are not alone!

[Leah]

Welcome!
We all know that this disease is so frustrating and figuring the diet out does take dedication and patience, but so many of us have had success. My journey started over two years ago. Luckily, I started on Entocort quickly and drastically changed my diet AT THE SAME TIME. It took me 6 months on Entocort ( slowly weaning off of it over time) plus diet changes to get to a good place. Your doctor took you off of it too soon. Most people who have success with that drug do so after at least 4 months.

I remain gluten dairy, and soy free, but have been able to add many things back in over time. When we are at our worst, nothing seems to sit very well. For most of us a diet that is basically protein and well cooked vegetables, and maybe white rice or potato gets us to a better place. The longer you stay with a simple diet, the better chance you give your gut time to heal. That means staying away from RAW fruits and veggies ( except maybe bananas), acid foods like tomato and citrus, prepackaged , processed foods, beans and legumes, sometimes caffeine…. the list is long. It's best to concentrate on what you CAN eat for now.

The Enterolab tests are the easiest and fastest way to help figure your main triggers. I had to do it the elimination diet way, but if you can, it might be worth it to you.

We are all here to help. Ask anything and keep us posted
Leah

[HockeyMom]

Welcome. I know this whole thing seems overwhelming initially but it gets better after things settle down some and you start to get your life back. The advice here is right on..once things settle down you can start to add things back in.

I stepped into this MC thing in February 2008...muddled along with diarrhea and PCP misdiagnosis/etc until things went completely off the tracks I'm August 2011. Biopsies diagnosed me at that time and I found these folks then.

My advice is to go all in/hardcore initially, get the Enterolab tests done and go from there. I tested out as reacting to gluten/dairy and soy..but the diary and soy were just borderline and is added them back eventually and decided that was a sort of cumulative mistake!

My husband is celiac and people think we are starving around here...we are not!! Your life will change but you will adapt..

Chin up....
HockeyMom