Maybe now I have MC and not UC & Enterolab testing

[thedell19]

Hello all-

I usually post at healingwell.com under the UC forum but as my new GI doc said I might have MC and not UC.

A little history:
I am a 23 year old male first experiencing problems about 2.5 years ago. About 1 year ago I went in for a colonoscopy and the colonoscopy was normal but biopsies showed mild inflammation. Does that mean I have MC? Most of my problems started during a very stressful time in my life (fiance, now wife, moving from MD to AZ, my last semster of college and graduation time, starting a new career, planning a wedding almost all by myself, and then myself moving from MD to AZ). So needless to say this time was very very stressful to me.

My symptoms:
At my worst I had watery diahrrea about 4-5 times a day, cramping, nausea, loss of appetite and weight loss of 20 pounds. Currently I am on Entocort and am feeling rather good but I would like to figure this whole thing out before I get off the Entocort. So I am heavily considering buying the lab kit from enterolab and test for gluten, egg, dairy, yeast and soy sensativity. Does anyone have any experieince using this procedure? If so what were your results? And would you recommend it?

I am kind of at a loss again with whatever is going on with me and would appreciate any advice.

Yeah one more thing. I tried to go gluten free once for 4 days. On the fourth day I had a more normal bowel movement for the first time in 2 years (well I have rather normal ones now with Entocort and Imodium) so could that mean that I actually do have MC and not UC?

My mind has so many questions racing through it and any advice would be great!

Thank you

Terps

[tex]

Hi Terps,

Welcome to our humble discussion board. "Mild inflammation" could be an indication of many things. If that observation was made under a microscope, then yes, it could be MC. MC, (LC, and CC), can only be diagnosed by examination of biopsies from the colon, under a microscope. If you have a copy of your pathology report, we might be able to interpret it, based on the reported findings.

UC is normally marked by lesions visable to the naked eye, mostly in the lower part of the colon, and it is often marked by blood in the stool. MC, on the other hand, NEVER causes bleeding, nor is it visable to the unaided eye, except by someone who is very experienced in diagnosign MC, and knows what to look for. Most GIs wouldn't recognize MC, if it bit them on the nose, but any competent pathologist should be able to diagnose it from biopsies taken from the colon.

You could be gluten sensitive with any Inflammatory Bowel Disease, (IBD), including Crohn's and UC, and, of course, MC. The tests from Enterolab are accurate, and reliable. I can personally attest to that. They can definitely tell you if you are gluten sensitive, and/or sensitive to various other foods that you might be interested in being testing for.

I recently had the tests for eggs, yeast, soy, and fecal fat score, (which is a measure of residual damage to the small intestine). I also had the gene test. My results were negative for all but the fecal fat score. I still showed some damage after over three years of strictly avoiding gluten, but that's not surprising, since I accumulated damage for several years, at least. My gene test showed that I have the main gene for celiac disease, and another gene for non-celiac gluten sensitivity. The gene test results for many of us is listed in a thread in the "Polls" forum.

Gluten damages the small intestine, and it usually takes weeks or months before a GF diet will begin to show improvements, and in some cases, it can take over a year, but occasionaly some individuals will show a response in just a few days.

We're not doctors, (well, most of us are not, anyway), but we'll try to answer any questions that you might have, 'cause we've been there, and done that, and everyone here understands exactly how you feel, (because we've felt the same way).

Again, welcome to the board.

Best regards,

Wayne

[Polly]

Hi there Terps!

As a Marylander, I am guessing that you graduated from the U. of MD. Am I correct? I graduated from the U. of MD medical school, and both of my parents were Terps from College Park!

Anyway, a big to you! I'm glad you found us.

It definitely sounds to me like you might have MC instead of UC. Do you know upon WHAT the diagnosis of UC was made? UC almost always shows up grossly during the colonoscopy - in other words, the doc can visually see damaged areas of gut, often with bleeding. The hallmark of MC is a normal-appearing gut to the naked eye, but then lo and behold, the biopsies come back showing signs of inflammation, and the doc is often surprised. If the primary finding on biopsy is infiltration by lymphocytes, then it is called lymphocytic colitis (LC). If there is collagen in addition to lymphocytes, it is called collagenous colitis, CC (both are under the umbrella term of microscopic colitis). Do you have a copy of your biopsy report? Your symptoms are certainly compatible with MC, too!

I have had some of Dr. Fine's tests - the gene test (which showed 2 genes that predispose to gluten sensitivity) the stool test for antigliadin antibodies, the transaminase test, the fecal fat test and the yeast test. All were positive except the fecal fat test. At the time I sent my specimen in, he was not yet doing dairy or soy testing (but I have determined through trial and error that I am sensitive to these too). Quite a few here have used Dr. Fine's tests and I can't recall anyone being dissatisfied. Dr. Fine is also very accessible by email and will answer any questions you have. He sends you a collection kit and you send back a stool speciman. Then he analyzes it in his lab. The info gained from Dr. Fine's tests is invaluable in diagnosing food sensitivites - and often much more helpful than the tests done by your GI. That is interesting that you saw improvement after only 4 days of being gluten-free (GF). Although it usually takes 3-6 mos. on the GF diet to see results (in our experience here), a few folks did experience fairly immediate results.

Did you have any other precipitating events just prior to the onset of your symptoms 2.5 years ago.....besides the stress? Some of the things thought to initiate the MC include antibiotic use, NSAIDs (like aspirin, Aleve, Motrin), proton-pump inhibitors like Prevacid/Prilosec, a serious GI infection, etc.

Well, I'll stop for now. Please don't hesitate to ask any and all questions. You won't believe the wealth of knowledge about MC here. It is incredible! And feel free to rant and rave, too, if you feel like it. We all know exactly where you are coming from. I'll look forward to further chats.

Warm regards,

Polly

[Matthew]

Terps

Welcome!

Polly and Wayne, as usual, have done a great job of covering the basics so will just add that I to have found a way to resolve my digestions problems from MC through Dr. Fine’s testing. It took a while after going on a gluten free diet to heal and resolve all symptoms but I would not hesitate to do his testing if I were starting over. His test were really the start of regaining my health as far as I am concerned.

Without biopsies it is hard to say if you have MC but please come back and ask any questions. Their are so many great minds here and so much accumulated knowledge that even if you don't have MC someone will be sure get you pointed in the direction of digestive heath and well being

My Best

Matthew

[JJ]

Hi Terps....so glad you found us...welcome! I have CC. I was clueless until I found this great group. Take care! Jill

[Mars]

Welcome Terps!

I'm sorry you had to search for some understanding of MC but glad you chose to ask your questions here.

This site has been created by those of us who have had or are, experiencing the same symptoms and confusion. Each day a new question is raised about the symptoms, causes and "cures", medicine and/or diet solutions and multi-intolerances (MI's) for MC. I believe you will find many of your questions answered by reading the various forums or by asking directly on the main message board.

Many of us has found that our symptoms are triggered by stress and it sounds like you went through a pretty stressful time. Did I understand that that is when the symptoms started?

Again, welcome to the group. Please feel free to ask any and all questions; we're here to support you and help you find some answers!

Mars

[starfire]

Well, I have nothing to add in the way of advice. They have already done a super job. I have LC and have been on Prednisone (would NEVER advise that), Entocort (I'd take it again if I had to), and Asacol (currently controling symptoms).

I had a good start on a good diet but Thanksgiving & Christmas did me in. Trying to get back in the groove now.

I think the tests you mentioned would be a great way to start.

Welcome...........

Shirley

[barbaranoela]

Hiya Terps-----welcome to the room--

I cant add anything more/nor better than Tex--Polly and Matt did--

I have MCC---which was diagnosed from biopsies that my GI clipped out during a colonoscopy---
and I do believe that this MCC was caused by taking too much anti-biotics---given to me by my *X* GP, for an ailment that I DIDNT have--
Thankfully,I am now doing Xcellant under the care of a NEW GI---plus the careing of my new GP!!!

So,dont give up---and do come in---ask questions as U like----U will always be given Xplanations/advice----

Keep a smile--
Barbara


PS. to add---STRESS will usually cause me a bout of *D* --so try to *de-stress* the STRESS~~~~
My meds. were Colazol plus Prednisone---the Pred. only used for about 3 months--
Oh----and had to watch my diet----veggies cooked almost to mush and then realizing what veggies I HAD to eliminate---

[thedell19]

Ok so I go by Terps on the other forum that I belong too, sorry for any confusion! Yes I did go to U of MD and I graduated in May of 2005 a couple of months after being dx'd with UC. The report that I got was very vague and basically stated that the colon looked clean but biopsies showed mild inflammation with no mention of lymphocytes,or collagenous just inflammation. That is about all I can say about the biopsies report.

At any rate I see that many of you are very pro Dr Fine's tests so I will definately be ordering it. It would be wonderful if I could change my diet and feel normal again! I jsut hate the D!

[starfire]

Believe me we ALL really hate the D!!!
We ALL have had very embarassing situations!!!
We sort of have a saying here that a person can post ANYTHING - most of all of us have either heard it before or had it happen to us before.

In other words you can talk about ANYTHING on this site without fear of grossing anyone out or anything like that.

Glad you found us.

Shirley

[Lucy]

Hi Terps,

Welcome!

In answer to your question, I have found Dr. Fine's tests to be more than helpful, and dead-on accurate. Removing the last of my "allergens" was what totally stopped the D. I think the tests help to identify the other common foods we sometimes or even often react to much more quickly than it would take by elimination alone. Even if a subsequent elimination process is required, it's much easier to do it once the known foods have been removed. I'm not sure I could have ever done it by elimination as probably most of the multiple reactors in this group have done.

In my case, I had lots of somatic systems that resembled things like flu, arthritis, tendonitis and stiff, tight tendons, fibro, and chronic fatigue that were what let me know that I was responding well to the gf diet RIGHT AWAY after I started it in earnest with the help of many who are now members of this support group. This time, I had the knowledge to do it right, although it still takes a while to figure out where the hidden stuff is.

Unfortunately, I waited an entire year after diagnosis before actually signing up with the original support group, so was on my own, and therefore, wasn't motivated to keep on a keepin' on after dabbling a bit by leaving off big sources of gluten when it was convenient. Even made an Apple Betty out of
a gf flour that year, not knowing that most of the other ingredients had traces of gluten in them, including the pie filling out of a can.
Think I'd done this just to see if I could do it.

At the time of diagnosis, I had NO clue that the M.C. was related to the generalized pain and discomfort and some other things that I'd been experiencing for years, so I wouldn't have noticed back then that the pain was lessening since I wasn't looking for that,, particularly since I was still unknowingly eating gluten, and was still eating other "allergens."

This is where this group of people really came in handy as soon as I joined a year later. I had noticed that first time, that the episodic "blow outs" as my mom used to call those gaseous diarrhea stools, were a little more spread out avoiding what I knew at that time to avoid, however, so it did make me wonder at the time, particularly since I sometimes would not have enough gf food at home, so would periodically eat regular food.

I really think that those multiple bowel movements had just become a way of life, and since I had a little bit of control over my schedule, I just managed to work around it for a long, long time, until eventually, I was pretty incapacitated by the whole thing.

I think what made me come back a year later, was the fact that I was in such agony, and beginning to not be able to walk with severe arthritic symptoms in my feet to the point that I'd soon no longer be able to continue caring for my mom if something didn't give as she's very disabled with Parkinson's and associated conditions. With this acute arthritis situation, and greatly increased frequency of diarrheal stools. something just had to give.

After that year, when I went back to the old board, I must've seen an explanation that someone had written to a newbie or something that made me realize that the gf folks were for real, and I understood the science behind it by then.

Anyway, something I saw on the board let me know that I should join THEN. I'd never signed up for a support group that required signing up at that time, so was a bit leary of that at first, but so glad I'd done so after everything pretty much went back to normal after a decade or more of NOT being normal.

In my case, the no. of problems increased for every year that I remained on these antigens. Therefore, I'm so glad to see younger people taking charge of their lives early on in the disease process so that they won't end up wasting a decade before doing something about it.

By your already knowing about the relationship to diet, I trust that you've already checked out the articles in Dr. Fine's site. If you have not already done so, may I recommend the one that has "Before the Villi are Gone" in the title.

Also, you might want to do a search on Al Fasano. M.D, and his discovery, "zonulin" as well as a "zonulin blocker." This has to do with the permeability of the gut and the substance that controls it. It seems as though those of us with various autoimmune disorders have guts that are more permeable, and that can lead to the delayed food reactions that we have.

By the way, I just learned this weekend that the later the diagnosis and treatment of a celiac, the higher the no. of other autoimmune diagnoses that person is likely to get. The only treatment for celiac disease, which is somehow related to M.C., is the gluten free diet as you probably already know. Anyway, for that and other reasons, I'm glad you didn't stick this diagnosis in a drawer somewhere.

Hope to hear back from you soon!
Yours, Luce

[celia]

Welcome Terps,

I just recently joined the forum myself and have found it to be immensely helpful. I'm so glad you found us.

I just want to underline what Tex and Polly said about getting the actual biopsy report. I got a "report" in the mail from the doctor which was just a generic page that indicates if your test (in my case the colonoscopy) results are normal or not. The normal boxes weren't checked and on the blank lines it was written that the test results were consistent with colitis. It didn't say what kind of colitis, but since the doctor told me that my colon looked normal after the colonoscopy, I was fairly certain it wasn't UC or Crohn's.

I called my doctor's nurse and she told me that the actual biopsy report said lymphocytic colities. I asked her to fax me a copy of the actual biopsy report from the lab which will indicate the number of biopsies taken and should state if there is lymphocytic infilration or collagenous bands, which indicates MC. In my case, I also had increased miotic activity (cell division). Plus it said mild lymphocytic inflitration so I know my case is not severe at this point in time.

In my case, I found that I really had to get the biopsy report from the lab, not just a generic page from the doctor.

Once again welcome and take care!
Celia

[tex]

Celia,

That's excellent advice. For some reason or other, many/most GI doctors habitually withhold information from their patients, and/or they just assume that their patients are too ignorant to figure out what a pathologist's report says. While that may be a practical approach for many of the more common issues, people with uncommon diseases, such as MC, tend to be much better informed, out of necessity, (who wants to live with constant, uncontrollable diarrhea, for the rest of their life?).

In this, the information age, most of us want to know more about our conditions, and we want to know the facts behind the opinions that our doctors offer us. I suppose that's the reason why we seek out support groups, such as this.

After discovering that my GI doc withheld important information about an issue that was in the report on my colonoscopy exam, over five years ago, which eventually led to me winding up in the ER, being prepped for emergency surgery, I will always request a copy of reports following exams of that sort, especially endoscopy reports following colonoscopies, and pathology reports on any biopsies.

Thanks for pointing that out.

Wayne

[Polly]

Yup, Celia. Excellent point.

Since the diagnosis of MC is actually made by the pathologist who looks at the biopsy specimens under the microscope (and NOT the GI doc) it does make sense to get a copy of the pathology report. If we don't, then we are at the mercy of the GI doc's oral interpretation of that report to us. And we know only so well that there are GI docs who don't understand the significance of the term MC, let alone the findings of "mild inflammation". Haven't we even heard of docs who don't "believe in MC"? Better to see the report with our own eyes, IMHO.

Just my 2 cents worth......

Polly

[thedell19]

I do have the official biopsies report. It came right from the pathologist and it is still very vague. It basically just said while the colonoscopy appeared normal the biopsies showed very mild inflammation consistant with low grade colitis/IBD. I called the pathologist a few months later to get a clearer idea and he couldnt give me one. So that is what is leading me down this road to do some tests on my own through Dr. Fine's lab. I know I am sensative to some foods but I would like to know if I have intollerances. I think it would make life so much easier to be able to control symptoms through a diet. Like I said before I tried GF diet before I saw my GI for about 4 days and on the last day I had a slightly normal bowel movement...well it wasnt D and that is all that matters. If I can get rid of the D through diet then I will be happy again and encourage every new person to this forum to try the tests...

I am sorry I cant be much more help with the biopsies report, but that is all the pathologist gave me. Oh yeah the inflammation was in the mucosa. Thanks for all the kind words and if you can decifer anything from that tid bit of info please let me know. In the meantime I will order the tests and hopefully finally find out for sure!