Hi from a new member

[Rosie]

I got the results back from the biopsy last week for my colonoscopy, and it was positive for LC. I’ve been “lurking” around this forum and have been impressed with all the wonderful information and helpful people here.

Let me give a bit of background before I get started with some questions. I’m a 62 year old female and developed frequent, watery, explosive diarrhea for the first time about 2 months ago. It was the first time this has happened, although looking back I can see that I had a “sensitive” gut for about the last 5 years, although it was very occasional and easily controlled with Immodium. I developed a real sensitivity to dairy products about 5 years ago and the digestive problems pretty much went away for several years after eliminating dairy from my diet. So in hindsight, that was probably one of the first signs of LC, even though I didn’t recognize it. Just by lucky coincidence, I had scheduled a routine screening colonoscopy which my PCF had been after me to do for several years, and the diarrhea set in just a few weeks before it was scheduled. I told the gastroenterologist who was doing the colonoscopy about the sudden onset of diarrhea and he said that he would do the biopsies to test for MC. So I feel very fortunate to have been diagnosed so quickly after reading about the years that many of you struggled with debilitating symptoms before finally leaning what was causing the digestive problems. Those two months were really depressing and confining, as I would get very nervous and worried whenever getting too far from a bathroom.

Then the second lucky thing happened. While I was talking to the gastroenterologist before the colonoscopy, he happened to ask me if I was taking fish oil supplements, as he said they can cause diarrhea. I told him that I had been taking them for several years, and he said in that case it probably wasn’t an issue, but it got me thinking. I take a lot of different supplements and had recently added a couple more. So I got to wondering if my supplements might be a problem. I decided to eliminate all of them except for my multi-vitamin and calcium/Vit D pills. Within 2 days I started to improve, and now 3 weeks later the watery diarrhea has completely gone away and I’m mostly having the highly coveted “Normans” lol I still notice that I have problems if I eat raw vegetables and salad greens, but that is a minor annoyance. Here are the supplements that I’ve eliminated, and I would be interested in any comments. I realize that often it’s an additive effect and sometimes problems don’t show up until you reach a “tipping point”. I’m most suspicious of the Venacura (diosmin) since starting to take it somewhat coincided with the onset of problems. Supposedly there are no side affects, but here is what I found about mechanism of action. The prostaglandin affects raised a flag, since NSAI’s are thought to negatively affect the gut through actions on prostaglandins. The research was on endothelial cells of blood vessels, but we all know that when you take a pill there are systemic affects that haven’t been looked at.:

“Diosmin reduces the expression of endothelial adhesion molecules (ICAM1, VCAM1), and inhibits the adhesion, migration, and activation of leukocytes at the capillary level. This leads to a reduction in the release of inflammatory mediators, principally oxygen free radicals and prostaglandins (PGE2, PGF2a).”

Here is my list of eliminated supplements:
Venacura
Fish Oil (1000 mg twice a day)
Flax Seed Oil (1000 mg twice a day)
Glucosamine (1500 mg) Chondroitin (1200 mg) twice a day
Black Cohosh (40 mg once a day)
DDS Probiotics (dairy, glutin, soy, corn and yeast free) 2 capsules daily

Now that I’m doing so much better, wonder what further steps, if any, I should take now.

1. I have eliminated dairy 5 years ago, but eat lots of wheat and soy without apparent problems. Would it be useful to get the Enterolab tests for glutin/soy/yeast in the absence of problems? Or should I wait and see how stable I am with my current situation?

2. When I got the biopsy results from the gastroenterologist's office, it didn’t give me a lot of confidence in his ability to treat me. His nurse called with the results, told me I had colitis, that the doctor wanted me to take Entocort for 2 weeks and then scheduled an appointment for a month later. It’s good that he is aware of the value of Entocort, but I know from reading here that 2 weeks isn’t nearly long enough. It looks like that’s his blanket treatment for MC. The nurse called after I had been 2 weeks off the supplements and doing pretty good. I told the nurse that I was doing better and didn’t want the Entocort right now. But I still have the doctor's appointment in 2 weeks. My question is if it would be good to go on the Entocort even it I’m doing much better just to get the added healing benefits?

I guess that’s enough for one post!

Rosie

[no-more-muffins]

Hi Rosie, I guess I am the first one to say WELCOME! I am also new here and I love this place.

You are very fortunate to be diagnosed so quickly. I'll let the resident experts discuss Entecort with you since I have no experience with it. I am a newbie as well.

It is interesting what you said about supplements. I recently started taking probiotics and I do take fish oil as well. I don't really have D but I do have MC. I now question whether I should stop taking these things. Maybe others will comment on this.

Again, welcome to the board!

[JLH]

Rosie. You were so very lucky to get your diagnosis so fast.

Check to see if there is soy in your fish oil capsules. I stay away from flaxseed ever since I had flaxseed GF waffles (the only kind in the store) on a trip........

I'm not taking any meds for my LC so I can't talk about Entocort. It was one of two options that my doc gave me. Lialda was the other. I found the PP instead and went GF and then SF. I'd been DF for eons.

Tex will be along to answer your questions........

[tex]

Hi Rosie,

Welcome to our internet family. Your's is a very interesting case, to say the least.

While it's certainly not impossible that you might simply be enjoying a period of "spontaneous remission", that's very unlikely, especially so early in the history of your tenure with the disease. Obviously, if discontinuing most of your daily supplements, stopped your MC symptoms, then something in those supplements is almost certainly the trigger for your MC, in the first place.

As you pointed out, the diosmin is the most suspicious of the lot, since the timing of it's introduction makes it a prime candidate. However, diosmin has been shown to have anti-inflammatory effects, regarding colitis in rats:

http://www.biomedexperts.com/Abstract.b ... ed_by_TNBS

IOW, this research indicates that diosmin might possibility show promise as a treatment for colitis. However, that does not mean that it could not also initiate colitis in some individuals. Obviously, a lot more research needs to be done on this medication.

While black cohosh has shown a lot of promise in treating symptoms of menopause, and other issues, there is some evidence to suggest that it does so by means of estrogenic activity, which could imply that it could trigger a MC episode, (since several of our members have found that HRT prevented them from attaining remisson from MC, and there is also research evidence to substantiate this observation. On the other hand, though, some research claims to dispute the theory that black cohosh is capable of estrogenic effects. Thinking out loud here, perhaps it has an estrogenic effect on some individuals, but not others.

It is true that sufficient amounts of certain oils can cause D, but the type of D that they would cause, would not be the secretory D that is characteristic of MC, (IOW, it would not be the explosive, watery, high-volume, uncontrollable D, that is typical of an MC reaction).

I have eliminated dairy 5 years ago, but eat lots of wheat and soy without apparent problems. Would it be useful to get the Enterolab tests for glutin/soy/yeast in the absence of problems? Or should I wait and see how stable I am with my current situation?

Very good question. On the one hand, considering your dairy intolerance, it is hard to believe that you could be casein intolerant, without being gluten intolerant. However, in view of your current remission, maybe you are only lactose intolerant, (and not actually casein intolerant). Not everyone with MC is gluten sensitive, but the correlation is very high. If I were in your shoes, I think that I wouldn't be able to resist having some tests done at Entorolab, so that I would have the information for future reference. Also, it's possible that you may be gluten sensitivite, but you are asymptomatic, which would imply that you would still be subject to the elevated risk of non-Hodgkin's lymphoma, that goes with untreated celiac disease. Obviously, though, the decision is yours to make, as to whether or not you want to have some testing done. If you are symptom-free, those test results might be moot, (except, of course, for the non-Hodgkin's lymphoma issue).

One other consideration here, is the fact that to the best of my knowledge, none of our members who have MC, and who have had a stool test for gluten sensitivity done at Enterolab, have ever received negative test results, (for gluten sensitivity). A lot of us have received negative results for other food intolerances, but all of us have tested positive for gluten sensitivity. Since there is a possibility that you might test negative, (considering your current state of remission), your test results would prove to be very, very interesting, from a statistical viewpoint. That result would be extremely valuable information, regardless of whether it turns out to be positive or negative. In fact, it would be such valuable information to have in our database, that I would be willing to pay for that test myself, if the cost is an issue.

My question is if it would be good to go on the Entocort even it I’m doing much better just to get the added healing benefits?

I see absolutely no reason to take Entocort, if you are free of symptoms, and/or you are able to control your symptoms by diet alone.

Again, welcome aboard, and thanks for supplying so much useful information in your initial post. Definitely, please keep us posted on your progress, because this case involves certain aspects that we haven't encountered before, and we can all learn from your experience.

Tex (Wayne)

[starfire]

Wow, quite a bit of information for a first post!! Thank you!! I'm very glad you seem to have gotten your symptoms under control with the elimination of suppliments. I do believe that is a unique situation. I certainly hope it continues for you.

I'm looking forward to seeing more posts and updates from you.

Welcome to our group!!

Shirley

[Rosie]

Thanks for the warm welcome!

Tex, your advice is much appreciated. I realized after reading many of the posts on the forum that I didn't seem to fit the usual profile. I also realize that many people have had remissions and then had relapses for somewhat mysterious reasons, probably having to do with with accidental exposure to an allegen, or the unmasking of a new sensitivity. So I'll continue to be careful and watchful, and not count my chickens too soon......

I continue to be a bit confused about the gluten testing issue at Enterolabs. I sure wish that Dr. Fine would publish, but suspect that it's because he has accumulated a lot of circumstantial evidence, but without the proper controls can't publish. From what I can tell, there is a lack of data around the meaningfulness of the 30% of the general population who test positive for non-celiac gluten sensitivity with his tests. What does this mean for non-symptomatic people? I don't believe that he has good data around what percentage of the people tested who are positive for gluten sensitivity but not symptomatic go on to develop symptoms or other health-related problems. A controlled test would involve taking a large group of people who tested positive but are not symptomatic, having them continue to eat a normal gluten-containing diet, and following them over the many years time period that might be involved to determine the percentage that develop gluten sensitivity. This is expensive and hard to do. But it really needs to be done. And if he is convinced that those testing positive need to remove gluten from their diet in order to stay healthy, he would have a hard time commiting himself to doing the controlled testing necessary. But that's the whole purpose of controls! For myself, I would have to say that if I tested positive I would not be convinced that I needed to go on a gluten free diet. That being said, I'll probably go ahead and get the test and see what it shows. If it's positive, then I'll do some serious research and thinking about it.

Rosie

[tex]

I think you're correct about the data needed to convince the medical community. As you point out, that data will be very difficult to obtain, because many patients take decades to present with symptoms. No pharmaceutical company is going to sponsor the research, since the treatment does not require any medications, and since Dr. Fine strongly recommends the diet for anyone testing positive, (as you also pointed out), that suggests to me that the data needed to satisfy mainstream medicine, may never be collected.

As far as what his test results mean for non-symptomatic people, the implications would appear to be the same as for asymptomatic celiacs.

I can certainly understand how you could feel the way you do about this type of testing, because virtually no one wants to do the diet, if they don't absolutely have to. It's not just a diet - it's a lifestyle change, and it's for keeps, so that makes it a pretty drastic step to take, in anyone's life. And, unless you have experienced the hopeless feeling of seemingly endless diarrhea, exhaustion, migraines, joint and body pains, etc., then you don't actually have any real motivation to adopt the diet. Without clinical symptoms, it's pretty difficult to accept the fact/suggestion that a problem might actually exist, for that matter. I would venture to guess that there are many, many asymptomatic celiacs in this world, who don't have the foggiest idea that they even have the disease, and they are certainly not following the diet, either, FWIW.

I honestly can't say what I would do if I were in your shoes, because now I know so much more about it than I did back when my symptoms were first beginning to develop, so I look at it from a different viewpoint. Back then, I didn't have the foggiest idea what was wrong, (and neither did my GI doc). If my symptoms had suddenly just disappeared, I can guarantee that the best sales expert in the world, would have had his or her hands full, trying to convince me that I needed to adopt some sort of diet. I honestly doubt that anyone could have sold me on the idea. I probably would have viewed the situation the same way you are viewing it right now.

Please keep us posted.

Tex

[MaggieRedwings]

Welcome Rosie,

Sorry to know that you have been diagnosed but it is better to know the disease than be tossed around the medical community from one doc to another.

Am in a rush but wanted to say about supplements that Black Cohash was very injurious to me in a number of ways and all of my doctors agreed that it was fundamental in the growth of a fibroid tumor I had. Was taking it for menopause but it hurt more than helped. May be in the minority on my opinion but glad to hear you stopped it.

Will be back on Wednesday next week and check in then with you.

Maggie

[Rosie]

Thanks Tex and Maggie for your useful comments.

Maggie, I agree with you and others on this Forum that hormone therapy can be an issue with MC. As a bit of added detail, my serious D problems started shortly after I was prescribed Vagifem. I quit taking it as soon as the D started and I realized that I had problems, but it didn't seem to make a difference at that point, so I don't know if it contributed. Supposedly it just acts locally and doesn't get into the general circulation, but you know how that goes.... I can't take regular HRT because of having the clotting Factor V Leiden which predisposes women to blood clots. I discovered I have this about 10 years ago when my sister almost died from a pulmonary embolism shortly after she started HRT. She was tested, came back positive, and since it's inherited I got tested. So it probably was a blessing that I never considered HRT. As a result I've had nasty hot flashes for the past 10 years, hence trying the Black Cohosh. I will say that since going off it I haven't noticed much difference in hot flashes, so it wasn't doing much good. I'm also have tried bioidentical progesterone, but started tapering off it when I stopped my other supplements and am now down to half the dose. I don't know if that made a difference or not, since I stopped so many things at once. However, I'm grateful that it worked and am not about to start adding stuff back to see what might have been the culprit since they weren't very important to my health. "If it ain't broke, don't fix it".

Tex, I understand where you are coming from. It's frustrating to me that there isn't any sort of data around a positive gluten antibody test when non-symptomatic. Is it a gradual damage to the intestine that builds up to a point where gluten sensitivity occurs, like in celiac's, or is it a case of some sort of event occuring, such as stomach virus, that suddenly makes one sensitive? You are right about not wanting to make such a drastic dietary change without a compelling reason, and the fact that there is some evidence that gluten sensitivity might be a "spectrum disease" argues for being cautious and eliminating it if there is a positive gluten test. My daughter-in-law and their two grandkids are all celiac positive, so I know what's involved. She has kept the kids to a gluten free diet since they were infants. Since it was so prevalent in her family, her mom also had her on a gluten free diet since a baby. As a result, she doesn't have any problems and can eat dairy just fine, since her intestines haven't been damaged.

So I'll go ahead and order the gluten test from Enterolab and maybe, just maybe, I'll be lucky and discover that I'm not gluten sensitive........

Rosie

[tex]

Rosie,

According to Dr. Fine, and others, in the case of MC, some traumatic event, (within the digestive system), triggers a gene to initiate MC, and usually, also triggers a gene that initiates gluten sensitivity, at the same time, so this is very dissimilar to the normal progress of classic celiac disease. However, since many of us have both celiac and Non-Celiac Gluten Sensitivity, (NCGS), genes, some of us appear to accrue damage to our intestines by both mechanisms. IOW, having one disease does not make us immune to any other Auto-Immune, (AI), disease - In fact, it seems to make us even more susceptible to developing additional AI diseases.

I'll keep my fingers crossed that your gluten antibody test results are negative.

Tex

[Lucy]

Hi Rosie,

Wow, you are fortunate to have eliminated the things resulting in symptoms, at least for the time being.
What I would do is let your doc's office know that you are going to wait and watch to see if the symptoms return now that you've left off some things that you used to take, since you have had such a dramatic improvement in symptoms. You might postpone your appointment for a while, just to see if anything changes, unless there are other reasons for going in that soon.

What I do with a script that I don't want to start right away is go ahead and take it to the pharmacy, and just ask them to put it in their computer and not fill it until I need it -- I'll call them when I do.

That way, should you suddenly find yourself needing the medication right away, all you'll need to do is give the pharmacy a call, if the script's still good (til this time next year, in other words).

I confess I didn't have a chance to go through the complete thread, but I can understand your concern about getting off the gluten if you fear getting a positive result without symptoms from gluten, and then, not having enough confidence in the test results to commit to this diet for life.

It was easy for me to recognize that I was definitely gluten sensitive -- I got off the stuff several months before I did my first test with Enterolab. I think the dramatic results happened so quickly (not true some who eventually respond well) that that was when I gained more confidence in the theoretical basis that I had read for this condition and the gluten connection. I have a scientific background in research, so I was sketical at first, particularly since I didn't have alot of trust in things on the internet at that time.

Since this diet requires alot of commitment, yet you are probably still a bit concerned about the stool test results, perhaps you might start out with the genetic tests from Enterolab which are lots less expensive than the other labs and give you additional information about other HLA genes, which is usually not reported with the usual tests ordered from the main labs. They use the same test procedures for that cheek swab test as other labs, and I think actually farm those out to another lab anyway. There's really no reason why an insurance company shouldn't except their lab as it's just like any other fully accredited lab such as they are, so try to get a script to them, etc., if you want to save a little money.

Anyway, that test would tell you, first and foremost, if you have the main genes for celiac disease. I think Enterolab will mail their results for the genetic testing to your doc, so with that information, IF it comes back positive for one of the two main genes, your doc might be willing to do the mainstream testing for celiac disease which would include the blood testing for gluten antibodies, etc. For most people with M.C. who are definitely gluten sensitive, their results will be negative, but it just may be that you are a "silent" celiac.

I would just prefer to see you do the tests you trust, rather than do nothing at this time as if you are a "silent celiac," then continuing to ingest gluten could have some negative consequences. The blood tests are much less sensitive than the stool tests, but if the blood tests come up positive, at least you would, hopefully, be willing to commit to the gf diet for life. This is not something that you can just do when you feel like it or a fad diet, it is a treatment that works.

If your blood tests come back negative, then, if you still don't trust the other testing, I would go back and repeat them, periodically, but definitely repeat them if and when you begin to have symptoms such as those people with gluten sensitivity have.

Just as an FYI, I knew I was gluten sensitive after three days off of what I knew contained it at that time. I sent the stool in a couple of months later which also was to be tested for the dairy protein, casein.

As soon as the stool was sitting on the front stoop in it's little container for it's flight to Dallas, I immediately went off of dairy. That way, by the time I got the results back, I'd already noticed some improvement in the occasional loose stools I was having, without all the other symptoms by that time.

After that, I only had a little diarrhea about twice a week to any significant degree, and most of it seemed to be after my bi-weekly visits to our local dinner where I would only eat eggs and bacon, and a cup of black coffee.

Sooo...as soon as that poop was packaged for take-off on the front porch, I was off of eggs, and knew that worked to relieve those twice a week episodes of watery diarrhea. The yeast was throw in with that test as well, and was also positive. It's pretty much impossible to remove all dietary yeast as it's on all sorts of fruits and vegetables, but since I wasn't doing any baking with substitutes for wheat flour, etc., and I don't drink beer, then the dietary yeast issue was pretty much a moot point.

The soy test didn't come along until much later, but I was VERY sure I had it when my brother-in-law brought home some frozen waffles made from soy flour that was out of this world it was so delicious. Anyway, although I didn't eat those again or anything made of soy flour, I didn't worry too much about things made with soy oil or vegetable oils. At that point, I only had tiny little soft stools that might be followed by a little watery one on rare occasions, so I didn't worry about the small amounts of oil which weren't supposed to contain the protein (not so sure about that, but believed that then).

As soon as the test became available, off flew another specimen, at least a year later, I think. Anyway, I wasn't surprised that that also came back positive, so I've gotten off of a few gf products that had soy oil in them as well as the San-J Wheat free soy sauce, and after doing that, I never have a reaction unless I KNOW I've goofed up somewhere when I go back and re-read a label on something new, that has been ingested almost exactly 24 hours before -- my transit time through the gut.

Anyway, at this point, I can't use diarrhea to tell if I am sensitive to any other common allergens. If I do, then it's doing silent damage at this point in time. My sister has the exact same ones that I have, and has the same genes -- DQ2,1. We are both doing well, in terms of autoimmune stuff on this diet.

Best wishes.
Luce

[Rosie]

Thanks for your thoughtful comments, Lucy.

I've decided to go ahead and get tested both for the anti-glutin antibodies and also for the genetic testing. Knowledge is always good to have, and it will help me with future problems.

Right now I continue to slowly improve. I've gone from 3 or 4 fairly normal BM's a day to 2 or 3. I had one setback last week, but that was after a picnic at a vinyard with some unusual food (nuts and chocolate) and more wine than I normally drink....... I've also successfully added back some food that I had been avoiding. I am especially happy to now be able to eat the wonderful local raspberries, blueberries and peaches that are such a treat at the farm markets.

I still have some "fine-tuning" to do, as I don't feel stabilized yet. I'm not sure if if it is because I am still in the healing process stage and only time will help, or if I need to eliminate such things as glutin in order to achieve true health. My stomach is still a bit "gurgley" and I would like to get down to 1 to 2 BMs per day. And sometimes I'm a bit looser than I like to be. So by the time I get my results from Enterolab I'll have a few more weeks to see where I stabilize and if I need to do more.

I also have a background in scientific research.

[Lucy]

Hi again,

You sound like you are where I was when I had just eliminated gluten.

I also thought that I was still having various stages of less formed or partially liquid stools (in much less quantity, thankfully) due to needing more time to heal.

I was eating sooo much dairy as a substitute for the things I wasn't able to eat with gluten in the initial stages, that at first, at least, I wasn't suspicious of the dairy, that is until after I sent that first specimen in at the time I took myself off the diary prior to those results being returned.

It's just a good thing that that casein test was thrown in with the gluten test or it might've taken me much longer to catch on. Being off those two at the same time really reduced things down to a trickle! Ha! That meant the bad episodes weren't happening every day, and made me able to fine tune the accidental or contamination episodes alot more. It also made me a little more supicious that there might be yet another allergen lerking in the wings. I never thought I'd have more than the one food sensitivity.

Biggest reward for my initial efforts in the gluten removing department was that my body aches and pains, stiffness, headaches, etc., improved right away, except for things like MSG, sulfites, or nitrites/nitrates used as preservatives or flavorings -- bad migraines with those in sufficient quantities. I suspect that that comes from the blood brain issues we all have. The fatigue, unfortunately, took around 6 months to gradually resolve.

At any rate, I remember how determined I was to get that first "normal" stool.
I was on a mission!! What a goal to have for your life, eh?!! Actually, it had been longer than I carried to acknowledge since I'd had one anything near normal.

Best wishes with the teasing out process, and your testing. Maybe you will be one of the fortunate MC'rs to have fewer foods to eliminate. I really think you'll be ok with your fresh fruits and vegetables, particularly once the appropriate proteins are removed.

Yours, Luce