I didn't see "ADN" in your glossary--another darne

[bevfromwa]

but here I am anyway, after lurking for many informative hours. I am beyond happy to find you, and would like to introduce myself and ask a couple of questions.

I'm 73, female, DX with LC June 09 via biopsied colonoscopy. In the spring of 08 I'd had persistent D, PCP did tests, all negative, so my body decided it could get better, until Dec 08 when D returned 10-20 times a day, usually at night, yawn. When it became apparent it wasn't going away, PCP referred me to GI, finally got seen April 09. He prescribed Metamucil and 2 Imodium a day. I seemed to be getting better, but he recommended the colonoscopy, done June 09, the biopsy results of which resulted in DX of LC. I read about colonoscopy prep helping remission, and maybe that's what happened to me, because I was mostly ok for 4-5 months, until September 09. He also did extensive blood work, including the Celiac test, which I read here is notorious for false negatives.

During flare ups I kept a food diary for 2 months, and could find no cause and effect. I quit coffee for ten days, no change other than I never woke up. I severely limited dairy for a couple of weeks, no change. I discontinued anything I thought could be a problem, including all supplements, and slowly added them back--nothing.

Now GI wants me on 6 Asacol a day, if I can even swallow (a problem) these "horse pills" as he calls them. Also, need to wait for drug insurance to kick in Jan 1. He also likes Entocort for treatment.

My question is, since MC is an inflammation of the colon, and Asacol is an anti-inflammatory, theoretically time released to dissolve in the target area, would any natural anti-inflammatory such as tumeric/cucurmin be of any help? The side effects of Asacol terrify me, and Entocort scares me worse, since I have worked very hard to improve osteoporosis to osteopenia, and steroids are no-nos.

I am assuming that the diet recommendations in Heather's Eating for IBS have no relevance to MC. I also read that her acacia fiber might be less gassy than metamucil. GI makes a good point that fibers help absorb excess colon secretions and normalize D.

Any help will be greatly appreciated. Bev

[JLH]

Bev. We're glad you found us. This is the best place in the world for information and support.

I'm sure Tex will be along soon to answer your questions.

I will say, fiber is contraindicated with MC.

[Gloria]

WELCOME BEV!!!

I'm so sorry that you've been struggling with LC, but as Joan wrote, you will find answers at this site.

Some of us manage our MC using diet alone and some using a combination of medication and diet, and some with medication alone, each method having various degrees of success.

If you've been reading this board, you've discovered that most of us find that diet plays a big part in our disease. Most doctors refuse to recognize that diet has anything to do with it, however. As you mentioned, most of us fail the blood test for celiac disease, but we have found that we are just as intolerant to gluten as celiacs.

Like you, I eliminated dairy for a while, but didn't have any improvement. My GI told me that meant that I'm not intolerant to dairy. But the reason I didn't improve was because I had other unsuspected intolerances in addition to dairy. (See my intolerance list under my Avatar). In other words, if you remove one food, but are still eating other problematic foods, you will continue to have MC symptoms.

Even though I also have osteoporosis, I finally decided to take Entocort, with the goal of getting off of it as soon as I could. MC is an autoimmune disease, which also contributes to osteoporosis. I am not completely off of Entocort, but I have been able to reduce the dosage to just one pill every other day, unless I have a flare. Entocort has allowed me to get my life back and not be held hostage to this disease.

Please don't hesitate to ask questions. We are here to help you. You will get better and you will get your life back.

Gloria

[ant]

Bev,

Sorry you have MC but glad you found us.

Now GI wants me on 6 Asacol a day, if I can even swallow (a problem) these "horse pills" as he calls them.

I have just been prescribed with Asacol "sachet" (brand name Salofalk) which apparently dissolve in water. I have not picked them up from the chemist yet. I will post more details of them when I see them.

However, I am not sure I want to this Salofalk in replacement for Entocort. Most people say, and research suggests, that Entocort is the more effective drug to take, if no major side effects. While not 100%, it has (with diet also) reduced my urgency and so hugely improved my quality of life.

I have the beginnings of osteoporosis, and as Gloria says it goes with MC not just the drugs. I am trying to get sunlight and also am taking vitamin D3, B12 and folic acid supplements.

Again, welcome and I wish you all success in your journey to remission. Ant

[tex]

My question is, since MC is an inflammation of the colon, and Asacol is an anti-inflammatory, theoretically time released to dissolve in the target area, would any natural anti-inflammatory such as tumeric/cucurmin be of any help? The side effects of Asacol terrify me, and Entocort scares me worse, since I have worked very hard to improve osteoporosis to osteopenia, and steroids are no-nos.

Hi Bev, and welcome to our internet family. You've obviously already learned a lot by reading, and you've received some excellent information from Joan, Gloria, and Ant, and I agree with them 100%. Joan is quite correct - increased fiber in the diet, is a treatment for IBS, not MC. Minimizing fiber in the diet, especially insoluble fiber, is very beneficial in treating MC. To answer your question:

Theoretically, yes. Unfortunately, in the real world, I'm not aware of anyone who has been able to achieve remission by using natural anti-flammatories - at least, not by using them without either the diet, or drugs such as the corticosteroids, 5-ASA meds, or powerful immunosuppressants. Tests show that another natural anti-inflammatory, boswellia serrata extract, should be effective for IBD, (Inflammatory Bowel Disease). But one of our members tried it for months, without success. Also, it is expensive, in quantities sufficient to treat an IBD.

l agree that the 5-ASA meds, (including Asacol, Pentasa, Rowasa, Colazal, Lialda, etc.), are riskier than most GI Docs give them credit for, especially for long-term use. I also agree with Gloria and Ant, that Entocort EC, (budesonide), is effective and safe, when properly used, and it can allow you to get your life back, with minimal risk. We consider it to be the safest, effective drug for treating MC. No drug is as safe as treatment by diet modifications, obviously, but if you are going to use a drug to treat MC, then Entocort EC is the preferred way to go for anyone who is not allergic/intolerant of it. Most GI docs equate budesonide, with the other corticosteroids, such as Prednisone, and it might be just as prone to causing osteoporosis, if it were delivered as a systemic. However, when delivered in the form of Entocort EC, (IOW, with an enteric coating), only approximately 10 to 15% of the budesonide enters the bloodstream, thereby effectively suppressing the systemic side effects that are otherwise caused by the corticosteroids. When used the way that we use it, Entocort should not significantly contribute to osteoporosis.

One of the primary causes of osteoporosis, is gluten sensitivity. If someone who is gluten sensitive, continues to eat gluten, the damage that gluten causes to the small intestine, will cause malabsorption issues that cause, (among other adverse events), osteoporosis, no matter how much calcium is consumed. Most GI docs do not recognize that MC also involves damage, (inflammation), to the small intestine. They consider it to be a disease of the colon, (only), because that's what the name implies. (Colitis means inflammation of the colon - IOW, the disease was improperly named, in the first place, and medical understanding of the disease, and proper treatment, has gone downhill from there). It is true, that some of us only have colon involvement, but many/most of us also have small intestinal inflammation, and the malabsorption issues that go with it, (the same malabsorption issues that celiacs have to contend with). Most of us are just as sensitive to gluten, as the average celiac, but except for the members who also have fully-developed celiac disease, we virtually always receive a negative test result, from the classic celiac blood tests. That's why we use the stool tests offered by Enterolab, to determine whether or not we have certain food intolerances. Their tests are several orders of magnitude more sensitive than the blood tests, and much, much more reliable.

Again, welcome aboard, and I hope that we can help you to shape your treatment program, so that you can get your life back. Most GI docs have no idea how debilitating MC can be. They read the description of the disease, in their medical references, and conclude that it's a benign disease, characterized by diarrhea, so in their minds, it's "no big deal". Well, it turns out that it is a big deal, for anyone who happens to have it. No one truly understands the disease, unless they have it, so that's why we consider ourselves a family - we all understand it, since we've been there, done that.

Tex (Wayne)

[JLH]

BTW, I should have mentioned that I am using diet only to treat my LC. I got my diagnosis on a Friday and found the PP that day. By Monday, I was gluten free. I did really well at first but started having some symptoms again. Because of the PP, I suspected soy and it was confirmed by EnteroLab testing.

Have you visited the EnteroLab web site, yet? I know it is all overwhelming at this point but it will get better.

[ant]

Tex wrote

IOW, the disease was improperly named, in the first place, and medical understanding of the disease, and proper treatment, has gone downhill from there)

Here is an document on definitions that covers part of this issue.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1770777/

Note, it confirms a close relationship between celiac and MC.

All best, Ant

[connie]

Hi Bev,
Welcome to a wonderful family that will provide support and information.

I am new too but have found so much good information. I would add my voice to Ant's in encouraging you to explore the relationship to gluten and this disease. Most of the folks here are gluten intolerant.
I am so glad you found this site and I hope you will feel better soon.
Connie

[bevfromwa]

Thanks for all your thoughtful, informative responses. If anyone wonders about my post title, it was supposed to be ADN=Another Darn Newbie. I either made a typo that spellcheck didn't catch, or there were too many letters so it cut off some. Oh Well!
As suggested, I spent time on Enterolab site. Dr. Fine's comments comparing "a little bit pregnant" to low readings on his gluten sensitivity test prompt this question: If I am mostly symptom free for 4-5 days, eating wheat, oats and dairy, I wonder if I can be gluten sensitive. Are there degrees of sensitivity or could my last flare up have been triggered by:
1. I am not aware of dairy problems, use daily, but had homemade non fat yogurt (yogourmet starter) with banana, strawberries or applesauce every day for breakfast for 2-3 weeks. Could that much more dairy trigger a response? Months ago I seemed to have a similar yogurt response after eating it a lot.
2. Concurrently I tried People's Pharmacy arthritis cure (grape juice and pectin). Gi says grape is high fructose, but maybe that is more of an IBS, not MC problem.
3. Stress--yikes, I found out my medigap insurance cost is doubling, lots of work researching new plans

I would really like to avoid drugs and try to gain remission by diet. I did ask pharmacy to show me the size of Asacol, and they don't look that difficult to swallow, but, members indicate that it is not the first line drug of choice.

Which lab tests do you think would appropriate for me? If as I said I can eat gluten and dairy and have no problems for a while, could something else be triggering it like soy? Well, I eat mayo in salads and sandwiches, and that has soy in it.
Dr. Fine's 2003 speech transcript mentions a gluten sensitive individual with no symptoms whose health improved on a gluten free diet. But then I come back to"a little bit pregnant"--can degrees of gluten sensitivity cause symptoms some of the time?

Last question for now: I would appreciate comments on my biopsy, which seems odd in its limited scope. GI stressed multiple biopsies as I went under, yet it says received "in formalin 2 fragments of pale tan tissue each measuring 0.3 cm in one cassette.
Description: One H & E slide examined. Colonic mucosa showing a patchy and minimal increase of intraepithelial lymphocytes within the surface epithelium but without degenerative changes of the epithelium. Basement membrane appears normal and other features of acute or chronic colitis are not seen. No granulomas, ulcerations or dysplastic changes are present.
Many thanks, Bev[/b][/u]

[Rosie]

Bev, when I first discovered the Forum after my diagnosis of LC last June, I was pretty convinced that I wasn't gluten intolerant because it didn't seem to make a difference whether I ate it or not. My flare subsided when I eliminated all my supplements, so I figured something there was the trigger. However, after realizing that just about everyone with MC on the forum was sensitive to gluten, I went ahead and got tested at Enterolab. I had eliminated dairy about 5 years ago, in what was probably my first MC flare, and Tex mentioned that dairy and gluten intolerance often went together and it would be prudent to get the Enterolab test. I was somewhat suprised to get a positive result, but I decided to cut out gluten and see what happened based on what I had learned here. Well, after several weeks, some health problems that I had never associated with gluten really improved. My asthma was the most dramatic, as I had been plagued with a hoarse voice and constant throat clearing for a number of years. I was self-conscious about it as I sounded worse than my 92 year old mother! My voice improved so much that everyone noticed. I also had lots of problems with leg and foot cramps, and those have almost entirely disappeared. And the fatigue and lack of energy improved a lot too. Others could tell similar stories of improvements, as it's clear that the immune response to gluten can cause problems throughout the body. And with some of us, the gut doesn't seem to be where it has its major effects, which seems peculiar but is true.

After I got the positive test for gluten, I decided to go ahead and get tested for the remaining panel of soy, egg, and yeast. That was a good idea, because several weeks after I eliminated gluten I started going downhill. This often happens if other food sensitivities are involved, because when the body is no longer reacting to the primary allergen of gluten, it starts to react to the other sensitivities. The Enterolab results showed that I was sensitive to soy and yeast, but eggs were OK. So I eliminated soy and other legumes and yeast and immediately improved. Then I've been fine-tuning my diet, as it takes a while for healing to take place. I found out that gluten free flour made with sorhgum and corn meal didn't work, and high fat meats are a problem (goodby well-marbled steak, at least for now). But I can eat most fruits and cooked vegetables (except for beans and corn). With the help of Dee and others on this forum I've found workable substitutes so don't really feel deprived of having tasty foods. So now I am in the position of feeling better and more energetic than I have in a long time and my D is under good control. I feel like I have my life back and don't worry at all about going out in public for fear of a sudden onset of D. And this is all without any drugs. I don't even need to take Imodium, although I always keep some on hand in case I accidently eat something bad.

I severely limited dairy for a couple of weeks, no change.

I wanted to comment on this quote from your post. With these food sensitivities, "severely limiting" often isn't enough of a test. You have to completely eliminate all sources, as even tiny amounts can trigger the symptoms.

The great thing about this Forum is that it provides hope that there is a way out of this difficult, depressing and isolating disease. It felt very empowering to take charge of my disease, especially when most doctors don't understand MC very well.

Rosie

[tex]

Bev,

Thanks for the explanation on the "ADN". I wondered about that, and decided that you must have been referring to an "Associate Degree in Nursing". Your second guess is correct - the system only allows a limited subject length.

There are a lot of questions in your post, and Rosie did a super job of addressing the most important issues, (and I agree with her 100%), so I'll just touch on the questions that she didn't cover.

High fructose content is definitely a problem with MC.

Stress can magnify the symptoms, and possibly make them last longer, but so far, at least, no one has proven that stress can cause an MC reaction.

The cost of Asacol is approximately the same as Entocort EC, so from an economic standpoint, Entocort is a much more "efficient" choice - you get more "bang for your buck".

can degrees of gluten sensitivity cause symptoms some of the time?

Not really. I suspect that the symptoms wax and wane, according to the overall state of our immune system, and it's perception of our digestive system status as a whole. For many of us, symptoms can be somewhat cyclic, regardless of what we eat on any particular day. It is true that we each have our own unique threshold for the accumulated amount of gluten required to trigger a reaction, but those thresholds are measured in parts per million, (ppm) - IOW, very tiny amounts. For example, few of us will react at gluten levels of 40 or 50 ppm, and below, while most of us, (who are gluten-sensitive), will react at gluten levels of 200 or 300 ppm, and above. However, a very few will react at 20 or 30 ppm, while at the other extreme, a few may not react until they have reached the level of 400 or 500 ppm. That's still a tiny amount, however. If you're talking about the difference in eating a small crumb, or a sandwich, though - yes, a tiny crumb might, or might not, trigger a reaction, whereas a sandwich will, but you might not notice the reaction to the sandwich, (or the crumb), simply because gluten responses have a very long half-life. The tests at Enterolab are sensitive enough that they can detect gluten antibodies in the stool, over a year after all gluten is removed from the diet. IOW, the immune system continues to produce antibodies to gluten, as long as two years after gluten has been eliminated from the diet. All other proteins that we react to, (casein and soy, for example), have much, much shorter antibody response half-lives.

Last question for now: I would appreciate comments on my biopsy, which seems odd in its limited scope. GI stressed multiple biopsies as I went under, yet it says received "in formalin 2 fragments of pale tan tissue each measuring 0.3 cm in one cassette.
Description: One H & E slide examined. Colonic mucosa showing a patchy and minimal increase of intraepithelial lymphocytes within the surface epithelium but without degenerative changes of the epithelium. Basement membrane appears normal and other features of acute or chronic colitis are not seen. No granulomas, ulcerations or dysplastic changes are present.

You're right, both the GI doc and the pathologist appeared to do the absolute minimum, to diagnose your case. Technically, the word "multiple" is generally understood to refer to "several", implying 3 or more, and "more" is definitely better, since the inflammation is not usually uniformly distributed in the colon, and taking too few samples, can result in missing the inflammation entirely, and misdiagnosing the disease. (Your GI doc must have had an important golf date coming up in a few minutes. ).

The fact that the pathologist only examined one slide, is hard to believe, but maybe he figured that since he found something on the first one, there was no need to look at the second one. (It must have been past midnight, on Christmas Eve, or something, to inspire such minimal performance. ).

According to the pathologist's notations, you have minimal markers of LC, with no signs of CC, Crohn's, ulcerative colitis, or other adverse changes to the mucosal histology. It's good that it was diagnosed early. Be aware, though, that minimal markers do not necessarily correlate with minimal symptoms. Some members have found that even though they had minimal inflammation, their symptoms were quite severe, and attaining remission was difficult. That has no bearing on your case, however, since we are all different.

Tex