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Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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Rita
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New to the Group

Post by Rita »

Hello. I was diagnosed with collagenous colitis just over a year ago when I was hospitalized from diarrhea and needed IV fluids. A colonoscopy found the problem. I was given a drug that didn't work and then found that Pepto Bismal did and I was symptom free for a year.

When it returned I again spent 3 days in the hospital. This time I was
prescribed Entocort, which works well off and on but hasn't ended the flare up which now is into the second month.

My doctor never said anything about diet but I have studied up and realize I could be gluten intolerant. Some days are far better than other days but overall it is no picnic in the park to have this disease.

So I have decided on my own to go gluten free starting tomorrow. I have a store in the area that carries a wide range of gluten free foods at reasonable prices. In fact they have a list five pages long on the internet which I printed out. The store also has healthy meats and fresh vegetables.

A son is a pharmacist and discusses this condition often with customers and agrees with me I have nothing to lose by testing out the gluten free eating. I need to gain weight so if I know the foods I choose won't harm my colitis even if I don't know for sure if I am gluten intolerant I think I will relax and find I can eat larger portions and more often.

This makes sense to me -- would appreciate comments. I will look up recipes, etc. and I'm good at organizing a regime if I put my mind to it.

What I find hard to understand is that I am age 81 and all my life I had an "iron stomach" and no GI problems. To have this come on at this stage of my life was a real shocker. I like a wide variety of foods and to narrow them down is something I would prefer not to do but do it I will and give it a real try.

So I am hopeful that this diet change along with the Entocort which my doc said I can continue to take for the foreseeable future will work well.

Having become one of the potty people (I love that term!), I will read this group and know I am not alone.
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karenswans
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Post by karenswans »

Hi Rita! Welcome! You are definitely not alone. You'll learn a lot here--I've been diagnosed for a little over a month and have learned way more here than I did from my doctor. :lol:
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tex
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Post by tex »

Hi Rita,

Welcome to our potty people family. MC seems to strike at any age, and while there are many things that seem to trigger the symptoms, no one knows what actually causes the disease in the first place, though there are quite a few theories. One thing that we do know is that when the genes that predispose to MC are triggered, the genes that predispose to food-sensitivities are almost always triggered also, and as a result, most of us are now sensitive to gluten, and casein, (the main protein in milk and all dairy products), and about half of us are also sensitive to soy. Some of us are sensitive to other foods, and a few of us have many, many food-sensitivities.

Drugs cause a lot of cases of MC, and for those people whose MC was caused by taking a drug, just discontinuing the use of that drug will often bring remission, without a need for any other treatment. If you were taking, (or are taking now), any of the following drugs, they might be the reason why you are having symptoms: NSAIDs, (such as any form of aspirin), proton pump inhibitors, (PPIs), SSRIs, (or any other antidepressant or anti-anxiety medications), bisphosphonates, (for osteoporosis), calcium channel blockers, ace inhibitors, or long-term use of antibiotics. Of course, not everyone who takes any of those drugs, develops MC, but those drugs have definitely been shown to cause MC for some people.

If you don't mind doing your own cooking, cooking from scratch is safer than buying gluten-free processed foods, because many of us react to a lot of those foods, suggesting that they contain something that we are sensitive to.

If your doctor is willing to prescribe Entocort for as long as you need to take it, then with the Entocort and some diet changes, you are almost guaranteed to be able to control your symptoms, and maintain remission. You're fortunate to have an understanding doctor, because most GI docs aren't willing to prescribe Entocort long enough to allow the intestines to heal, so most patients relapse as soon as the Entocort is discontinued. And, the older we get, the longer it takes the intestines to heal.

Again, welcome aboard, good luck with your diet, and please feel free to ask anything.

Tex (Wayne)
:cowboy:

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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sarkin
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Post by sarkin »

Welcome, Rita!

You have a great attitude, and that is one of the most important weapons in the MC battle. I also had an "iron stomach" prior to MC, though my digestion didn't hold strong for quite as many years as yours :grin:

The combination of diet change and Entocort is very powerful. I have been lucky to make good progress with diet alone - but it's wonderful that you have this additional great weapon in your arsenal, while you figure out exactly which foods you react to.

I eat very few "gluten-free" foods, as Tex mentioned. The "healthy meats and vegetables" section of your store would be where I do a lot of shopping. We each have our own adaptations for shopping, cooking, etc. Many here recommend Earth Balance's soy-free spread - I don't eat anything bread-like at all any more, so would have nothing to spread it on! I cook often with coconut oil... you will find your own preferences and needs as you go along.

Hope you're feeling better fast, and please keep us posted.

--Sara
Rita
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Gluten free food

Post by Rita »

Thanks to you who responded to my post. I do have a question --I realize there are only a limited number of grains that don't contain gluten, but I do enjoy breads and are there not recipes one can make oneself with grains that do not contain gluten?

I very much want to put back the 10 pounds of weight I have lost. So I need calories. The store I am going to shop at today has a marvelous food and veggie section and also appears to sell prepared mixes for breads that are gluten free. Also gluten free toaster waffles and pancake mixes. And gluten free hot and cold cereals.

I only weigh 90 pounds, down from 100-115. That means I am
really scrawny.

So what is suggested as a way to gain weight on a gluten free diet?

Weight may not be a problem for many, but it is a prime concern of mine.

Will appreciate any input.
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Post by draperygoddess »

Hi, Rita!

Welcome to the group! I am so impressed that you are so computer-savvy and found this forum--I have had symptoms for years and just found them two months ago! This is truly the best place to go for advice and answers--I ask a LOT of questions, and everyone is so patient and helpful. I have had the same experience with "gluten-free" foods--sometimes I'm fine, other times I react and don't know why. Plain, simple foods seem to be safer at this stage of my recovery. And going GF wasn't nearly as hard as I thought it would be. Feeling better is so much more important than anything I miss eating. :eat:
Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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sarkin
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Post by sarkin »

Rita,

Many of us do struggle with weight. My weight has stabilized, and I'm not scrawny at all. One thing that helped was probably just a little time and healing... but it also took me a while to figure out that while I was pushing grains *off* the plate, I needed bigger portions of those foods that are remaining *on* the plate. I no longer eat smaller meat portions than my husband, for example.

My favorite GF junk food is - plain old potato chips. Those Classic Lay's are pretty hard to beat, if you are able to tolerate potatoes - and if you're doing OK with oil. Many of us have trouble with excess/added oil when we're most symptomatic.

Almond butter or sunflower butter can be good additions, if you're avoiding legumes (including peanuts). I like cashew butter, too... Also, though oils can be a problem when we're at our sickest, forget about "low fat" eating. It turns out the science was never there to support that idea anyway.

Once you're further along in healing, you'll be absorbing more nutrition from your foods, and that will help a lot. Meantime, many of us supplement Vitamin D and B12 especially, because those are the ones we have the hardest time absorbing properly, before our gut heals.

I wish you luck with this - protein & muscle are important to health and healing, and when I lost weight as rapidly as you describe, I lost a lot of muscle, too. I wish you luck building back - I know it can be done.

I do like hot rice cereal - I don't trust oats at all... and be sure to give your toaster a thorough de-glutenization. (I spent an incredible amount of time decontaminating our waffle iron, and now I don't actually have any recipes that call for it... But I'm sure I'm about to dream something up! Maybe waffled meatloaf?)

--Sara
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tex
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Post by tex »

Rita,

One of the side effects of Entocort is weight gain - it tends to stimulate the appetite. It doesn't work for everyone, but many people gain weight while using it.

I'm not a baker, so I can't offer much advice on selecting GF flours for making bread. Selecting the right flour blends, and baking good GF bread is an art, so hopefully someone who is good at it will respond to your question. I will point out that many gluten-free flours provide more calories than conventional flours, so as long as you eat good-sized portions, you should be able to gain back that weight, as you get your symptoms under control, and as your gut has a chance to heal.

I do use Pamela's Baking and Pancake Mix, and IMO, it's by far the best one on the market. It makes great-looking pancakes that taste just as good as they look. It can also be used for making muffins, coffee cakes, etc,. but I've never tried baking anything with it.

I agree with Sara that it's important to take certain vitamin supplements, because inflammatory bowel diseases tend to cause a depletion of vitamin D, and most of the "B" vitamins, especially vitamin B-12. Along with the B-12, be sure that you are getting enough folic acid, because folic acid is necessary in order for the body to utilize the B-12.

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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sarkin
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Post by sarkin »

Rita, Tex is being very gracious when he says he agrees with me... I learned about the importance of supplementing those nutrients right here on this forum, from the wise man himself!

I recently had my Vitamin D levels checked, and they are considered 'normal' by my doctor and standard current measures, but on the low side, according to what some Vitamin D researchers recommend. And that is with a fair amount of outdoor time, plus supplementing at a much higher level than the USDA considers necessary (I take 4000-6000IU daily). If I'm thinking right, that means I would likely be quite low even taking supplements, if I followed the much-lower government intake advice.

I started lower and worked up to that level gradually, as PP member Gabes recommends. And of course, check that your supplements don't have any stealth ingredients. My original Vit. D contained soy, and I now use a formulation that comes in drops - no capsule, and fewer ingredients.

We recently had excellent GF/everythingF muffins made with coconut flour. I found that I was not hungry after a muffin-y breakfast, though I definitely feel that way when I eat a grain-y muffin. We use coconut flour in our meatloaf-muffins, too.

Bon appetit!
Rita
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Going Gluten Free

Post by Rita »

I posted recently I decided to go -- my GI doc said nothing about this but my GP and I discussed it and he said "why not give it a try."
Somehow just making that decision gave me two
good days of freedom from excessive potty time.
The mind works in mysterious ways. :lol:

A son helped me shop for gluten free bread, buns, cookies (I love my sweets), crackers and hot and cold breakfast cereals. I don't think it is going to be difficult to stay with this -- I do want to find some good gluten-free bread recipes I can bake myself.

To gain the weight I need it is best to eat 4 to 5 small meals a day and some kind of bread with a spread such as hummus or peanut or almond butter appeals to me.

After our foray at the store to purchase these foods we stopped at a new farmer's market in my area. And lo and behold there was a booth with gluten free baked products and some yummy ones. The fresh produce there was just excellent -- fresh from the farms -- and so I will be returning there weekly. I don't own a car but my neighborhood in San Diego's Pacific Beach area is flat and so I ride an adult trike with an electric motor and a big basket in back to carry home groceries or whatever.

I am far more cheerful today than when I first wrote my first post here. It is helpful to know that others are managing this mysterious disease.

I do keep my fingers crossed that the number of poops a day are now no more than 2 or 3 -- and
where other than here could I talk about poop and find it acceptable?
:grin: :grin: :grin:
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sarkin
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Post by sarkin »

Rita,

So glad you're cheered - and yes, we do call ourselves the Potty People for a reason!

Jason's and Artisana are two brands of nut butters that also can be bought in packets - I carry a packet of Jason's chocolate-hazelnut butter as an emergency food (it fits in my purse, it's well-sealed, and its ridiculously delicious!). I've also spread nut butters on slices of cold, boiled potato (my husband almost wept because he thought it was so sad, but I found it quite delicious - and I had the boiled potatoes on hand, but no GF bread). They're also good on apple or pear slices, once you're tolerating raw fruit - you could peel it in the beginning to make sure.

Sounds like you're well on your way, and in a most delicious and lovely fashion.

Congratulations,

Sara
Rita
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Gluten free ideas

Post by Rita »

Sara, that is a great hint, spreading nut butters on apple or pear slices.

I see you live in Brooklyn -- I lived in NYC for 25 years and in Park Slope for 5 years. I miss the food in NYC -- you can find anything at all. I hope to develop food choices I truly enjoy although it will take a lot of exploration, but there are many recipes gluten free on the web. When I first considered it the thought sort of overwhelmed me, but now I can see it is doable.

After my first bout of microscopic colitis a year ago August and in about six weeks I got a remission and went a full year before it started up again. I had really put it of of my mind and then WHAM.

I am so pleased to have found this group and I will "mine it" for other suggestions and diet choices.

Thanks to all who have shared with me and encouraged me.

I don't mind at all being one of the Potty People. It is a privilege :smile:
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sarkin
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Post by sarkin »

Rita,

Park Slope is a skip-and-a-jump from me - and yes, we in NYC are blessed at the huge availability of a wide variety of food, often at terrific prices because it's such a competitive environment.

I also had a mysterious remission, followed by a WHAM - wish I'd learned about diet the first time, and I would have had a much softer landing (plus, I would have developed a whole fleet of new habits and recipes sooner!).

My husband actually experiences something like fear at the prospect of eating food that isn't tasty (there should be a word for that - blandophobia?). I love food, but if I have a meal that's not my absolute favorite, it doesn't strike terror into my heart. We both love the way we're eating - at first we were better at making food delicious than convenient, but we have gotten better at whipping up unplanned meals that are 'Paleo' friendly. Sometimes he will add something to his plate that doesn't work for me, but our basic meals are all wonderful. I'm expecting we're about to have more variety, because the fall harvest season is really just kicking into gear, and it will be our first 'winter' with MC cooking and eating...

(I feel privileged to be here, too.)

Bon appetit, and speedy healing,

Sara
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Post by Rhyes »

Hello, I'm a 38 year old man who was recently diagnosed with Lymphocytic Colitis. I suffered from several bouts of diahhrea every day and haven't had a normal BM for over 4 years. Last Saturday all of my symptoms dissapeared. I have been normal all week. I've been on Lialda for about a month and a half. I haven't made any changes to my diet. I've done a lot of research over the past year or so and read that high dose Pepto Bismol helps. I did take two chewable tablets last Friday, but can't believe that it would work with one dose. Plus, over the past few years, I have taken tons of Pepto and all of the other OTC's and nothing even touched it. Has anyone else ever had their symptoms disapear like this before? Also, I'm finding myself scared to eat much for fear it will return. I am an avid runner and love to exercise. Does anyone know if running or weightlifting is bad for this condition?
I'm glad that I found this site and can comminicate with others who know what this is like. It has absolutely controlled my life for years. I'm trying to enjoy this respute that I've had all week.
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Post by sarkin »

Welcome.

I had a period of 'disappeared' symptoms, too.

It is possible that the Lialda 'kicked in' - I bet you're right, two little Pepto, one time, might help, but I doubt it would "turn off" symptoms so dramatically!

I think exercise can only help, both body and mind/mood, though if you're feeling really lousy, you might want to opt for a kinder/gentler version of your favorite workout.

Another new member just joined, who has had some Pepto success (as I did - but not quite the magic bullet you had with one dose!). I found it really helpful, but many people have terrible side effects, and cannot tolerate it even in moderate doses, much less the high levels required to whip MC into shape. That topic is here: http://www.perskyfarms.com/phpBB2/viewt ... highlight= and might interest you.

I know what you mean, about how much MC can control your life. Enjoy the break in symptoms, for sure - and let us know how we can help you figure out how to turn that respite into a nice, long-running and stable remission.

BTW No other OTC ever did me much good, either, when I was first symptomatic. I didn't try the Pepto, when I was first sick, because that icky pink color has always creeped me out (wish I had known!). I'm so glad they make a capsule you can swallow, instead of the chewables or the unspeakable liquid forms....
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