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Some Thoughts On Treating Microscopic Colitis
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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sun Dec 18, 2011 10:44 am    Post subject: Some Thoughts On Treating Microscopic Colitis Reply with quote

Hi All,

I never cease to be amazed at how difficult it often is, to convince people who are so sick that that they are practically chained to their bathrooms, that something in their diet is the cause of all their symptoms. It's almost as if we're trying to sell some kind of snake oil. Laughing Most people are very reluctant to eliminate a food that they consider to be a staple, from their diet, as if it's somehow risky to do so. The reality is, if worse comes to worst, the only risk is that it might not help. shrug That's not exactly the worst thing that can happen to us. Is it?

On the other hand, without hesitation, our doctors will prescribe drugs with the most Draconian side effect risks imaginable, and those same people who are reluctant to try changing their diet, will gladly take those drugs, (even though they can't possibly be sure that the drugs will actually help, because frequently, they don't), and if the side effects become reality, they go back to the doctor, who prescribes some more drugs to counteract the side effects of the first drug. Rolling Eyes Sometimes the drug will bring remission, but as soon as the treatment is discontinued, a relapse occurs, and the doctor pretends to be surprised, and writes another prescription, either for the same drug, or a more powerful one, (with worse side effect risks), and the drug merry-go-round goes on and on.

Looking at the accumulated experiences of the members of this board, realistically, the diet probably brings remission, (without the need for a maintenance drug dosage), for roughly 60 to 70% of those who try it, and something like 90%, or better, are able to attain remission by using diet changes in combination with Entocort or a 5-ASA med. (I'm just guessing at those statistics, obviously, but I believe they're reasonable ballpark figures). When you compare that success rate with typical drug efficacy rates, it looks pretty good, because most of the better drugs, (for treating any issue), are only about 60 to 65% effective, and many are not even that effective, (of course, a few do better than the average, as well). But unfortunately, there are no drugs that show acceptable results for treating MC.

Consider this:

How well do drugs alone treat MC? Well, according to research studies, not very well. In the most recent published study that I can find, (published in 2006), the study showed that "up to 50 % of patients receiving anti-inflammatory treatment", were able to resolve their symptoms. That's not a very good success rate, and yet it's the treatment of choice for most GI specialists. The article concludes that, "About 30 % of patients may experience persistent diarrhea even 10 years after diagnosis", and remember - that's under the condition that they're following the best treatment plan known to modern medicine.

Quote:
CONCLUSION:

The long-term outcome of CC is benign with a resolution of diarrhea in up to 50 % of patients receiving anti-inflammatory treatment. About 30 % of patients may experience persistent diarrhea even 10 years after diagnosis. Our data confirm that CC is a chronic disorder with a variable course of symptoms during a long-term follow-up.


http://www.ncbi.nlm.nih.gov/pubmed/16981069

In view of that, why on earth are so many people reluctant to change their diet, in order to get rid of their symptoms. The diet is by far the most effective, safest way to treat the disease. In fact, it's risk free, and waaaaaaaaay more effective than any drug treatment. Doesn't that make it a no-brainer, or am I overlooking something?

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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humbird753
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Food Intolerances : Gluten, Casein
Location: Wisconsin

PostPosted: Sun Dec 18, 2011 11:17 am    Post subject: Reply with quote

Tex, very well said! My experience with my PCP and GI (especially the GI) was to only offer Entecort while listing off horrible side effects being very likely. And at the same time I was told that after taking the drug, my symptom would more than likely return. They also said that since they weren't really certain what caused MC, they didn't know how to effectively treat it. With the uncertainty of everything I was told, I then turned to a naturopathic doctor. Although it took several months of eliminating other possible health issues, she at least came to the conclusion that I had to go on a gluten-free diet. Then I had to understand what gluten was. My frustrations left me once I found this site. I am learning what a gluten-free diet is, and finding out I can still eat. After being on this type of diet since 12/5/11, I am already getting results - some days better and then some days seem not as bad but similar to before the GF diet. In time, I am optimistic the results will be very good.

Very Happy
Paula
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"You'll never know how strong you are until being strong is the only choice you have."

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Fish2575
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Food Intolerances : Wheat, Dairy, Soy, Eggs, Corn, Oats, All Nuts, All Legumes, Chicken, Turkey, Fish, Chocolate, More!
Location: Oregon

PostPosted: Sun Dec 18, 2011 11:39 am    Post subject: Reply with quote

I agree with Paula, well said! I said almost the exact words to my dad (the internist) yesterday, and thankfully he was very supportive. "If it might help to change my diet, why wouldn't I try." And I was referring to all of the "extra" allergies that showed up on my Enterolab results. I am still trying to convince my family of the harm of gluten and dairy. I think they are beginning to come around!

Frustrating not to have the medical community acknowledge this. We are the few trying to fix our issues ourselves. For us it truthfully doesn't matter what the GI thinks! I just told mine firmly that I can't eat gluten. Maybe she can connect the dots herself. I feel horrible for the people who don't have any knowledge that things really can change with dietary modification. Now if only I could figure out what exactly I need to cut out!
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MBombardier
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Food Intolerances : Grains, dairy, legumes (especially soy), and eggs. Avoiding nightshades, cruciferous veggies, and high-histamine foods.
Location: Vancouver, WA

PostPosted: Sun Dec 18, 2011 12:29 pm    Post subject: Reply with quote

Count me in the 60-70%, Tex. I tried the 5-ASA med for a couple of weeks with no effect when I was first diagnosed, but then determined to seek my own path to remission drug-free. I don't even use Pepto-Bismol or Imodium, though I have been strongly tempted on occasion. I am now in remission, except when I challenge something I would like to add back into my diet. With the healing I am experiencing due to a diligent avoidance of all gluten, some of the other foods that used to cause me to have a severe reaction can now be eaten in small amounts from time to time. And of course, some cannot, and I will continue to avoid them.

I shouldn't be, but I am amazed at how well I feel simply because I removed certain classes of food from my diet. I think many of us are frustrated, especially with loved ones, who don't understand this, or believe us.
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Marliss Bombardier

Dum spiro, spero -- While I breathe, I hope

Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
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Kari
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Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Sun Dec 18, 2011 1:31 pm    Post subject: Reply with quote

Great Summary Tex - thanks for taking the time to put that together. My sense is that an even greater percentage of MC sufferers would be able to manage their symptoms with diet (or diet in conjunction with entocort), if they were willing to let time work in their favor. I think because it often takes a lot of patience, as well as trial and error, to get your system to calm down and stabilize, some people simply give up, and follow their GI's bad advise. The other thing, of course, is that you have to be 100% "free" of ingesting your allergens, which is not so easily accomplished, especially if you have a myriad of other demands on your time. As we all know, those allergens hide everywhere.

All my MC symptoms have resolved (diet alone), with the exception of the BM's, which are still for the most part too soft to be considered "Norman". One reason for this could be that I have stopped boiling my fruit, and eat uncooked peeled apples and pears, as well as some other fruits like grapes. I'm feeling so well lately, and rarely experience "urgency", and it feels like my gut is healing a bit more every day. For example, yesterday, I ate at a French restaurant that didn't have a gluten free menu, but offered to taylor my meal. I had sauteed tilapia and shrimp with a garlic/olive oil/lemon sauce. I had asked them to use olive oil in place of butter. I couldn't eat any of their starches, but had steamed broccoli and sauteed onion on the side. The meal was delicious, and I had no adverse reaction. That's a huge improvement over, let's say, 7 months ago.

Although I still eat a very limited diet, like Marliss, I'm able to have a small amount of something that I previously could not eat. So I feel I've reached the other side of the "MC mountain", but it is almost a year and a half since I first went gluten free, and subsequently so many other things "free". I often wonder if the fact that I was sick for so many years before discovering the diet connection is causing me to take longer than average to achieve "remission". And then again, I wonder what "remission" really means, because I sure feel good :).

Love,
Kari
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Stanz
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Food Intolerances : Genetically GS via Enterolab, Tapioca
Location: Oregon

PostPosted: Sun Dec 18, 2011 1:47 pm    Post subject: Re: Some Thoughts On Treating Microscopic Colitis Reply with quote

tex wrote:


Doesn't that make it a no-brainer, or am I overlooking something?


It should be a no-brainer, Tex, I don't think you're overlooking anything and it's a pretty sad situation. We've all been brainwashed about grains being "healthy" and our whole food system is built around breads & cereals. Gluten is in virtually everything in the grocery store and Lord knows we shouldn't have to take time to eat healthy when the food business has made it so easy for us to fill up on instant gratification that we get addicted to like pizza and pop tarts that taste sooooo good. People are lazy and afraid of change and also have been trained to believe that their doctors continue to learn and have the patient's best interests at heart. This is especially true, it seems, for those born prior to the 60's, they often don't question their doctors and their doctors in turn, don't seem to take family medical histories into account. We're trained not to question our "superiors".

One would hope that with the amazing access to information that the Internet has given us, more people would do the research themselves, when faced with a health crisis. Instead, they accept diagnoses that are based on nothing other than "rule out" criteria, such as Fibromyalgia and CFS. We "diet" by drinking poison in the form of nutrasweet, our food supply has been forever changed by genetically modified grains. We are also the most toxic, having been exposed to heavy metals and carcinogens that have since been banned. We carry mercury in the fillings in our teeth and were injected with it via thimerosol. We played with lead toys. We live in homes filled with lead paint and still most of the research on lead poisoning is geared only towards brain damage in children exposed to the paint dust, when in reality the grandparents and parents of these kids are mis/dx as having some "rule out" disease and never connect the dots. Then naively further damage their health by taking drugs that mask symptoms when there actually is a simple cure.

It was my stupidity of heat stripping lead paint in '92 that really kicked off my health issues and ultimately made me question everything that is western medicine. My ND at that time told me a great analogy that I've never forgotten: Imagine that you have a container in your body that collects toxins, imagine that once that container is full, those toxins begin to spill out.

Diet should ALWAYS be the first suspect for any intestinal illness, it is shocking that it seems to be the last.
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Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Deb
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Food Intolerances : Gluten, still determining others
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PostPosted: Sun Dec 18, 2011 2:31 pm    Post subject: Reply with quote

Tex, maybe you should make this a sticky so everyone who comes here will read that first. It is so logical....I just don't understand why so many people just don't get it!
Deb
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tex
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2017 Nov 18 - 4:15 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sun Dec 18, 2011 4:11 pm    Post subject: Reply with quote

Hi Deb,

That might be a good idea. There are some great responses in this thread, also.

Thanks,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Fish2575
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Food Intolerances : Wheat, Dairy, Soy, Eggs, Corn, Oats, All Nuts, All Legumes, Chicken, Turkey, Fish, Chocolate, More!
Location: Oregon

PostPosted: Sun Dec 18, 2011 4:27 pm    Post subject: Reply with quote

I appreciate hearing the success stories. I am right in the midst of it, feeling worse than ever at times even though my diet is very restricted, trying desperately to figure out what else might be causing the problem, but I have to realize it all takes time. Patience is not one of my greatest assets. I hope to look back in a year and be feeling much better than today!
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Lesley
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PostPosted: Sun Dec 18, 2011 4:55 pm    Post subject: Reply with quote

Quote:

I appreciate hearing the success stories. I am right in the midst of it, feeling worse than ever at times even though my diet is very restricted, trying desperately to figure out what else might be causing the problem, but I have to realize it all takes time. Patience is not one of my greatest assets. I hope to look back in a year and be feeling much better than today!


Did I write this and not remember? No, Fish it was you! I might as well have, because you are expressing exactly how I feel.
The palm oil really knocked the stuffing out of me. The bad stuffing - glad to get rid of it, but why did the good stuffing have to go also?
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Fish2575
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Location: Oregon

PostPosted: Sun Dec 18, 2011 5:07 pm    Post subject: Reply with quote

Lesley, I have noticed we are right at the same spot, going through this together! Susie
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bevfromwa
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PostPosted: Sun Dec 18, 2011 5:38 pm    Post subject: Reply with quote

I was thinking of posting re a visit Friday with my dermatologist, and I think this is the perfect thread for it. Just a routine visit, you know, to have a look see at what might be developing from youthful transgressions, i.e. sunbathing! I had not seen her since MC, so told her about it, and what I was doing and not doing. The "not" of course is following the advice of my GI "Dr. Diet has nothing to do with it". He will only use drugs, so I quit going to him. Anyway, she said she and her colleagues see many skin problems that they think are related to gluten sensitivity. She actually said that she admired me for my attitude. She is quite aware how difficult it is to follow a GF, SF, DF diet, and said so many patients just want to take a magic pill to solve the problem, they can't be bothered to try to figure out and follow the diet. Interesting, huh?
Beverly
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Robin
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Food Intolerances : Gluten, dairy, soy, corn, chicken, tuna, pork, cashews, casein and probably more!
Location: Wantagh

PostPosted: Sun Dec 18, 2011 9:23 pm    Post subject: Reply with quote

Here you go again Tex!!! Your simply amazing!

Its funny that this thread came up. My 30 year old son's girlfriend has been having some problem....coughing, headaches, aches and pains, tired all the time and of course the good old bathroom issues! Does this sound familiar to anyone? She asked me what my diet entailed. I told her a very brief synopsis. She was very reluctant for changes in her life. Until last week when she became very ill. My son called me and said he thought she had the flu. When I got there it wasn't a flu, it was a reaction from something she ate the night before. Well being the mother I am....I really said it loud and clear to her about her food habits (also to my son who thinks he is eating healthy). I sent them a lot of info on the topic of gluten in their diet. Its been only 5 days, (for them to be gluten free) they were here today for dinner and they both are amazed at how they feel. My sons girlfriend has not had a headache, coughing and NO D! She still feels tired and ache but not like before. My son is still a little reluctant. I made pasta for dinner he had the homemade and she had the brown rice pasta. She felt great after dinner he had a stomach and felt very tired! So I asked them how hard is it for you to understand what you eat is causing your problems. Both of them looked at me like I was crazy. I give up! I told them this is not some fad diet...this is a way of a new and improved life! I do hope they stay gluten free but I think for the younger generation is easy for them to eat all the JUNK!

Thanks again Tex!!!

Love Robin
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JoAnn
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PostPosted: Sun Dec 18, 2011 9:35 pm    Post subject: Reply with quote

Thank you Tex for a great post. I also think it should be somewhere where new members cannot miss it. I also agree with Kari that patience and time cannot be overemphasized in gaining control over MC. It's always so hard in the beginning when you are doing the right things but not seeing the results you expect. In my own case, after a roller coaster year and a half of ups and downs, I was finally off entocort and managing with the diet alone. Now, 3 years since diagnosis and finding this board, I feel like my old self. As time goes by, I feel better and better.
I think you have to have the faith that for most people the diet is going to bring remission as you tweak things along the way. There will also be those times when you react no matter how careful you are (stress, hormonal issues, etc). If you can somehow dig in your heels and stick to things listening to your body as you go along and ride out the setbacks, you'll get there. I think it's important not to gauge your progress against some elses. Everyone has their own timeline with this. I've said this many times before, but if I had not found this board, I truly believe I would be on disability now. But instead, I got my life back, work full time, enjoy my family, and am involved in church and other activities. Being able to be a part of this board is a vital step in healing. We all know that besides being a physical disease, this can wreak havoc on your emotional and mental well being. It is such a blessing to have somewhere to come when you are feeling defeated and scared. I know if you will follow the dietary advice given here and reach out for help when things are rough you will be comforted and loved by those who have been there and understand. I will always be grateful that Tex and so many kind and generous people were here for me. Love JoAnn
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Stanz
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PostPosted: Sun Dec 18, 2011 10:38 pm    Post subject: Reply with quote

Beautifully spoken, JoAnn. I read what you wrote and what Robin wrote about "life" with this. Reality is that research says that ultimately 1 in 3 humans will eventually find out that they are gluten intolerant. As a caterer, I see the growing awareness literally week by week in the messages I get about food intolerances in people I am going to be working with who I don't know already to have dietary restrictions. It's really been amazing to watch the whole food intolerance issue unfold. I've always had vegetarians and vegans and the lactose intolerant......... but in the last 3 years the gluten intolerant "aware" people have increased quite rapidly.

I guess I could be considered as someone who has become a bit of an evangelist as far as gluten is concerned, but even w/o that factor, and that's only when I am on set, now I am constantly being sent messages from producer's that I'll be working with on ucoming film shoots who are in contact w/talent from out of town that have noted gluten intolerance on their contracts and that I will be feeding. I used to view vegans, etc. as a bit of a pain in the ass many years ago, used to seem it was mostly the camera dept. who were high maintenance, and now I think that stress (camera dept. certainly has it) plays a part in this illness taking hold and not going away until we remove the toxin that's making us sick, and has been for most of our lives.

It is always a comfort to come home here after a long day and know that Tex, et al, are here and understands. I too am grateful to have found you all.

Connie
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