TA DAAA! My MC is GONE!

[MaggieRedwings]

Want to offer my congratulation Dee but am worried about the Chron's possibility. Please keep us posted and keeping my fingers crossed for you.

Love, Maggie

[Dee]

Had my small bowel series this morning!
Findings: Small bowel looked fine.
Soooo, no signs of crohns!!!
Colonoscopy showed no sign of MC two weeks ago.
Now it's down to figuring out what other foods trigger my D.
Very interested in the MRT test, but due to lots of family health problems since January, etc.., I haven't had time to keep up on the latest.
What do I have to do to get this test done?

Dee~~~~

[Gloria]

Dee,

Congratulations on not having MC anymore! You must be very relieved to know that you don't have Crohn's.

Mary Beth, our resident dietician, has been helpful in steering members to a dietician who can help them get the MRT testing done. If she doesn't see your post, you can send her a PM.


It's interesting that a few of us have had colonoscopies showing that the clinical manifestations of MC are gone, but the symptoms of diarrhea, and less-than-normal BMs are still there. Polly reported that she didn't have perfect Normans until she did the MRT testing and removed even more foods from her diet within the last year. Her biopsies had already shown she didn't have MC, yet she was still having some symptoms.

I've been GF for four years now and wonder if a colonoscopy would show that I no longer have MC. Yet, I am a long way from remission due to many other food intolerances. What do we call it when we no longer have the clinical evidence of MC (positive biopsies), but still have diarrhea? And why is this? Is diet the cause, and MC the effect, or is it vice versa?

Gloria

[tex]

What do we call it when we no longer have the clinical evidence of MC (positive biopsies), but still have diarrhea? And why is this?

That's IBS. Just kidding.

IMO, after years of reacting, if the worst offenders have been removed from the diet, the immune system tends to settle down and place fewer T-calls in the epithelia of the intestines. And, of course, after the diet is corrected, the collagen bands will return to normal thickness. I've forgotten what the normal thickness of those collagen bands should be, but it's far less, (I'm thinking about 5 microns), than the 10 micron threshold that's used as a lower diagnostic limit for CC.

It's a shame that pathologists aren't required to list the actual lymphocyte counts shown in each biopsy sample, because I have a hunch what is happening is that once the lymphocyte count falls below 20 lymphocytes per enterocyte, virtually all pathologists are going to label that as "no evidence of LC", simply because the threshold for a diagnosis of LC is specified at 20 lymphoctes per 100 enterocytes. Any pathologist worth his or her salt, though, knows that a normal colon only contains approximately 5 lymphocytes per 100 enterocytes.

That gap between the normal level, and the threshold for a diagnosis of LC is pretty wide, and it's the domain of paucicellular LC, and most pathologists and GI docs don't even have PC on their radar, because of the arbitrary definition for diagnosing LC. See the problem? I have a hunch that a heck of a lot of people have paucicellular LC, but they don't even know it, because it's not on their pathologist's or their GI doc's radar.

At least that's the way I see it.

Tex

[ssharril]

I have had Collagenous Colitis for 5 years and it was much worse 6 months ago when my last colonoscopy. I have had three rounds of prednisone and one of entocort and continually take apriso every day, and colestyramine powder. I just had my gallbladder removed, and strange as it seems, that seems to have helped instead of hurt the symptoms. After reading posts here, I want any suggestions anyone has about going to GF and DF in order to help the symptoms and/or the disease. Thanks so much for getting me active. Sammye

[JLH]

Sammye, we're very glad you've joined us. I know you will find a wealth of information and support here.

[tex]

Hi Sammye,

Welcome to the board. The reason why the diet works is pretty simple, and it's incredible that the GI specialists can't figure it out, but most of them don't have a clue. They truly believe that diet has nothing to do with digestive system problems. That's like saying that the quality of the air we breathe has nothing to do with breathing problems. Who would believe that? I suppose GI specialists would believe it. But no one else would.

When the genes that predispose to CC, (or any other form of MC), are triggered, the genes that predisposes to gluten-sensitivity, (and other food sensitivities), are also triggered, at the same time. That's why we suddenly develop food-sensitivities, after being able to eat virtually anything, for most of our life.

The drugs that the GI docs prescribe to treat MC can help to suppress the inflammation that's associated with CC, but as long as we continue to eat the foods that cause the inflammation, we will continue to generate new inflammation. It's as simple as that. While it's not easy to track down all the foods that causes our inflammation, (unless we are only sensitive to one or two - we are all different), for those of us who are not helped by drugs, changing our diet is the only way we have to get our life back, and almost everyone who comes to this discussion board, is successful in controlling their symptoms, either by diet alone, or in combination with a maintenance dose of a medication. Diet is the key - no question about it. Hundreds and hundreds of members here, will tell you the same thing, based on their experience.

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

Tex

[ssharril]

Congratulation Polly, I cannot imagine how excited you are. I am sure it was hard work but hard work that pays off is worth it. I have collagenous colitis and have had it for 7 years at least. With my last colonoscopy last summer it was much worse. I really could identify with you having to get up in the middle of the night and head for the bathroom. I had my gallbladder removed two weeks ago.

After reading your post I decided that my Gastroenterologist might be wrong that it will be something to deal with forever. I started GF and DF three days ago and the stomach feels better already. Symptoms are not completely gone but some improved. Did you see improvement in symptoms soon after starting the diet? I was told I would be worse after the gallbladder surgery, but it is mostly better. I pray that in a year or two, I can report a similar result from the diet that you experienced.

Thanks so much for the encouraging post.

[ssharril]

I am excited to report that after 1 week GF and MF, my symptoms are greatly reduced. I cannot imagine how much I can improve by keeping this up.

Thanks King Penguin and Tex for the encouragement. I hope I can bring my Gastroenterologist on board when he hears about the improvement. He really wants to help, but he can't seem to think out of the box yet.

Sammye

[tex]

Sammye,

That's definitely encouraging news. I hope that you'll continue to make good progress.

Tex

[Polly]

Hello Sammye and

What wonderful news that you are seeing results so quickly after going GF and DF!!! I am thrilled for you. To answer your question, I did see some results fairly quickly after adopting the diet approach - mainly an improvement in frequency/urgency of BMs, a lessening of the "brain fog" and joint/muscle aches and pains that gluten causes, and a reduction in bloating. However, it took 9 full mos. to see my first formed BM. I'm not sure why I hung in there so long using diet alone - probably because of the support and encouragement from the lovely folks here, actually. We have learned that it may take quite a while for our guts to heal fully, especially when they have been inflamed for years. Patience is definitely the name of the game. Especially with regard to fatigue. For me, fatigue was perhaps the most disabling symptom. I could fall in bed at 7 PM, sleep 12 hours, and wake up exhausted. It probably took 2-3 years to recover my normal energy level - it was gradual, and I mostly noticed improvement when I thought back to an earlier time.

Looking forward to future chats. And best wishes for continued success.

Hugs,

Polly

[sarkin]

Sammye, that is great news - it really does make it easier to persevere when you get positive feedback from making a change! Congratulations.

I also have found that the building back of my energy and strength has taken longer than stopping the symptoms. My nephew could see the difference between where I was back in June, compared to September, and now. My neighbors, who see me more often, also comment that I look better now. And I am less easily destabilized by a single late night or schedule disruption.

You must be on the right track, with such rapid improvement! Here's hoping your healing continues and accelerates.

Sara

[Sharaine]

Sammye,

You're on the right track. Congratulations. I've been getting better gradually with diet and Entocort. It takes a while to figure out what all of your sensitivities are ... I'm still trying to figure mine out, and hope to go the Enterolab route early in 2012.

Keep up the great dedication.

Sharaine

[humbird753]

Congratulations to you, Polly, for the obvious remission!!! And congratulations to all of you who are finding great results.

It is encouraging for newcomers to read that "we can get our lives back."

It's a real motivator to continue to find our own way to get great results.

Thank you.


Paula

[wmonique2]

Hi Polly,

I just read your post of 2010 and I am sitting here with tears in my eyes. I am recently diagnosed, living in a dark tunnel, thinking that this is the way I will have to live from now on, and here I find your post and I am overwhelmed by emotions thinking that you beat the odds.

It gives me hope and a lot of resolve. That I'll do whatever it takes to be healthy and live a meaningful life.

Thank you for sharing your well deserved success.

Monique