Diagnosed with MCC 3 weeks ago and have much to learn

[Sharaine]

Hi. I'm so glad I found this website! I was diagnosed three weeks ago with Microscopic Collagenous Colitis. I was fortunate in that I had XD 20-30 times a day for four weeks before the diagnosis. At 2 1/2 weeks I finally went to my GP and she referred me to a GI. The GI immediately ordered a colonoscopy and did 9 biopsies that all showed MCC. I'm lucky that my GI knew about MCC and knew to do the biopsy. I had my diagnosis 10 days after I saw my GP when many folks with MCC require years to find a diagnosis.

Unfortunately, my MC resulted in my having to cancel an 11 day business trip at the recommendation of my GP. I don't like not being able to do what I planned to do, nor do I like breaking commitments. Looking back, I know it was good that I didn't go (can you imagine running to the toilet on an airplane every 10-15 minutes?! )

My GI put me on 9 MG Entocort immediately and I'm to take it for 6 weeks. I run a low grade fever almost daily although a couple of times it has come down to almost normal. I've cut out all gluten and dairy. The XD has stopped, but the D or loose stools continue in very small amounts. Last night I made green curry with chicken, broccoli, squash, and cauliflower. The sauce indicated it only had coconut milk, xanthiam gum, and spices. What I missed was that the sauce was imported from Thailand. Within 10 minutes of eating the very mild curry with brown rice, my stomach was churning. Some D ensued and then a migraine set in. :-( I am guessing there were other ingredients in the curry sauce that were not listed.

Last weekend I went into a pizza place and ordered GF pizza with sausage and mushrooms, no cheese on my half (my husband had cheese on the other half). Within 2 hours or less, I spiked a fever of 101 and had to put on polar fleece even though I was outside and it was 75 degrees and sunny. It took 2 days to break that fever.

The irony for me is that I think my getting hooked on Irish Oats (steel cut) may have been what triggered my onset of MC. I'm hypoglycemic and when my SIL introduced me to Irish Oats, I loved them. When I added walnuts it was the perfect breakfast and kept my blood sugar levels fairly balanced with minimal crashes. I liked this so much that I made it every morning for six months.

I have much to learn and am thrilled I found this site. It makes me feel better knowing I am not alone with this rare disease. I am frustrated because I don't know what all of my triggers are yet, but I'm willing to make the changes necessary.

Thank you for being here and sharing your stories! :-)

[tex]

Hi Sharaine,

Welcome to our internet family. I agree, you definitely received a fast diagnosis.

It's certainly not rare for ingredients to be omitted from an ingredient list, and, of course, they're virtually impossible to track down. Please note that some of us react to xanthan gum. A number of us here react to oats, (even certified gluten-free oats), including me.

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

Tex

[EastWestGirl]

Hi Sharaine,

Welcome to the site.

That you were spiking a fever makes me think you might have a bacterial/viral infection going on (many here have had infections that they believe led to their having MC or LC).

Did you GI order all of the routine studies to see if you have an infection in your intestines? CBC with WBC? Etc?

My LC started with what I believed was a case of food poisoning and I went through 4 months of XD until my diagnosis came through. But my GI never found a trace of a food born pathogen or a parasite. It was likely long gone by the time I saw him but the LC remained.

I have a hard time believing that the oats would cause you to get MC however oats CAN be contaminated with bits of wheat flour but I would look for a bigger initial trigger. Also, be sure to get tested for celiac disease (entero lab has the most sensitive tests).

I hope you solve the mystery. The folks here have so much knowledge...I am a newbie here and am constantly learning from them!

Linda

[tex]

Linda,

You raise a good point about the fever. At one time, it was claimed that MC does not involve fever, but that is obviously wrong, since it's an inflammatory bowel disease. Usually, though, if/when it does involve fever, the fever will be at a relatively low level.

I agree with you that oats is not high on the list of possible suspects for triggering MC initially, but quite a few of us here do have autoimmune reactions to pure, (wheat-free), oats, so it can certainly trigger a relapse, which means that it's not inconceivable that it might possibly trigger the disease in the first place, in some cases, (cases involving high levels of oat consumption, for example).

You can read about an oat challenge that I did, several years ago, at the following links, if you're interested:

http://www.perskyfarms.com/phpBB2/viewt ... +challenge

http://www.perskyfarms.com/phpBB2/viewt ... +challenge

Many celiac "experts" mistakenly recommend pure oats for celiacs, but unfortunately, they base their recommendations on the results of short term trials, and avenin takes much longer to generate a buildup of antibodies in the blood, high enough to trigger an initial reaction, when compared with gluten. Since I hadn't eaten any oats in years, I had to eat oats for about 6 weeks, for example, before I built up enough antibodies to where I began to react to it. Most oat challenge trials don't even last that long. IMO, most celiacs will indeed react to avenin, if they eat a significant amount of oats, for a long enough period of time. (Avenin is the storage protein in oats, which is equivalent to the gluten in wheat.) As far as I am aware, there is no consumer-level test available, to test for avenin antibodies, either in the blood, or stool.

Tex

[EastWestGirl]

Hi Tex,

How interesting about a low grade fever being a symptom of IBD! This is something I did not know. It still makes me wonder about many cases of IBD then being related to a pathogen of some sort?

I had an occurrence of D that lasted for 4-5 months a few years ago (2003 I think). It started the day after a pot luck where I ate some questionable catfish and persisted continually for many months. This was about 7 or so years before my 2nd (recent) episode and subsequent Dx of LC. During this first episode of D, I had a low grade fever MOST of the time and the GI that I had at that time (different than the current one) couldn't find a problem with me (we did fat absorption studies, tested for parasites, bacteria, gall bladder scan, even did biopsies during my colonoscopy, celiac tests, etc) and she found nothing save for a comment that I had a patterning in my large intestines that made her think I had been abusing laxatives (I hadn't). She concluded that I might have IBS and basically said she'd done all she could for me.

One day I was at my wits end and I went to see her. She was out of the office and I wound up with a "substitute" doctor who looked at my symptoms (long term D, low grade fever) and said to me, "You look like you have an infection so I'm going to treat you for an infection". She gave me an antibiotic and I was fine in a few days. No recurrences and my diet hadn't changed. I was fine for a good 7 years or so.

Then last year I ate some questionable sushi, got sick the next day, and stayed sick for about 4 months. Similar pattern to what happened 7 years prior for me.

This makes me wonder if my first episode of D was a presentation of IBD *or* if I was actually infected with something that the tests couldn't pick up. I am still convinced that my second bout of major D was also kicked off by a pathogen and led to my Dx of LC.

Does LC or CC also present with a low grade fever?

I typically run a bit cooler than most so this is most curious to me.

Linda

[tex]

Not everyone with an IBD has fever as a symptom, of course, but certainly some do. In fact, recently, some authorities claim that fever can even be associated with IBS, but I have a sneaking suspicion that in those cases, it is highly likely that a diagnosis of an IBD has been missed, (most likely, MC).

There's little doubt that many cases of IBD are caused by pathogens. You night be interested in this article:

Whether IBD is caused by individual species of bacteria or disruptions of entire microbial communities remains controversial, said senior author Laurie H. Glimcher, Irene Heinz Given Professor of Immunology at HSPH. "Our findings suggest that answer bridges both hypotheses--specific species of bacteria (Klebsiella pneumoniae and Proteus mirabilis) appear to work in concert with the indigenous gut microbial community to cause IBD."

http://www.sciencenewsline.com/medicine ... 00020.html

Does LC or CC also present with a low grade fever?

Yes, it can, but of course, it probably doesn't for everyone who has the disease. Fever is more common with Crohn's and UC, because of the increased severity of the damage done to the intestines, by those diseases. I had fever many times, during reactions, but I can't say for sure that it was always due to MC, because I also had diverticulitis issues.

Melanosis coli is a condition in which the mucous membrane of the colon is pigmented with melanin. Typically, it's caused by the use/albuse of certain types of laxative, but you're not the first member here to report having it, so obviously, there must be other causes.

I typically run a bit cooler than most so this is most curious to me.

That's common for people who are hypothyroid. I'm not saying that you're hypothyroid, because some people just seem to normally operate at a lower than average temperature, but low body temp is one of the common symptoms of insufficient thyroid hormone production. In fact, one of the best ways to determine the proper dose of a thyroid supplement, (especially a natural thyroid supplement), is to double the dose about every two weeks, while measuring body temperature about mid-afternoon, and stop increasing the dose when the temp averages about 98.6 degrees. According to survey results of the members of this board, we are approximately 7 times as likely as someone in the general population, to have thyroid problems.

Tex