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Judy1953
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Another newly diagnosed fully lost newby!

Post by Judy1953 »

I had "it" for 8 weeks before I found out "it" had a name. I realized a couple of things I couldn't eat right off the bat. Salad. My favorite beautiful crunchy food. Never has fruit looked so good to me. The internet has only conflicting information. I came across this site by googling MC and potato chips! Who knew! I still have no clue what I should try eating. Now I see people putting back in their diets what I thought was ok anyway. The budesonide (Entocort?) is helping by cutting number of outbursts a day. One time with 5-8 throne sits at a time. Unfortunately, IT is not particular with its timing. What is normal or back to normal with this? What is a paleo(?) diet? Is any bread okay? Are foods like chicken or turkey easier to digest and are they better or okay made as salads(mayo not lettuce)? Why are eggs so bad? And to answer the man who blithely said it was a no brainer to change diet, perhaps he would like to do it with a gag reflex that rejects many foods. One last question--Does EmergenC with tons of electrolytes do well for the electrolyte loss? Tasty, quick and chock full of stuff.
I think that's a lot for now
Thanks for any help.
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tex
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Post by tex »

Hi Judy,

Since I am apparently the one who made the comment (in a specific context) about changing diet in order to treat MC being a "no brainer", I reckon that your categorization of that remark as "blithe" (which means "showing a casual and cheerful indifference considered to be callous or improper"), means that you don't want to see any suggestions from me, so I will honor that implied request and refrain from trying to help you.

I do want to welcome you to the board, however. :wink:

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.
Judy1953
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Sorry, Tex

Post by Judy1953 »

:oops: I'm sorry I offended you. Leave it to me to get off to a good start. It's no wonder I have digestive problems, I keep trying to eat my feet. I just mean that some of what I think I've heard about eating are actually things that I can't swallow because I literally gag on them.
I am trying to change my diet but have no clue what to change. So, you are right it is a no brainer to change, but NOT a no brainer what to change.
Thank you
Humbled in Connecticut :cry:
Judy
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carolm
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Post by carolm »

Judy, there are sections for newbies here and you will want to visit those. During my first big flare I had to eliminate gluten and dairy. In addition it was necessary to eat low or no fiber, low or no sugar, no caffeine, nothing spicy, low or no fat. In fact 3 years later I still eat very little sugar and fat. I also found I had to eliminate soy and once I was off of Entocort I found I was reacting to eggs.

Find your safe foods and stick with them while you are on Entocort, then you should not relapse once you stop the Entocort. For me these were chicken, potatoes, rice, carrots, squashes, almond milk, almond butter. Eventually I was able to add beef and fish, along with green beans. Making soups from safe ingredients is helpful. Some members have made bone broths to help them heal. You will definitely need protein to heal the gut. I was told here and by my GI doc that it would take 2 years and they were absolutely correct. Stay hydrated with water. You may have to give up coffee, tea and fruit juices for awhile until things settle down.

My opinion regarding gluten free breads is: don't bother. They are grainy and dense and not particularly helpful for you right now. Regarding your gag reflex-- I found that using certain herbs or spices helped me, like using sage and rosemary in my home made chicken soup turned it into a comfort food that I craved. Rice cakes and Lays Naturals Reduced fat Potato Chips are still the only processed foods I eat. GF mixes have too many ingredients, maybe some you react to. Think 'eat simply'-- a lean roast with carrots or baked chicken or fish with green beans or vegetables you can tolerate. NO raw vegetables, salad or raw fruit. These are like sandpaper on your inflamed gut.

Hopefully these suggestions will get you started. Hang in there and keep reading. The advice I received on this board is the reason I have my life back. The docs will give you meds but those don't help you heal. The diet heals.

Carol
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Post by TXBrenda »

I just mean that some of what I think I've heard about eating are actually things that I can't swallow because I literally gag on them
.

Judy,
If some of the suggested foods will make you gag, let us know. We might be able to suggest something else. If the thought of eating meat makes you gag, I understand there are other sources of protein. I'm a meat eater, so I have never ate much soy unless it was an ingredient in a processed food. When I went GF in 2003, there were not many GF foods available in my area. I started by adapting recipes that I could eat and still feed my husband and daughter. I made soup with potatoes instead of noodles. If we ate tacos, I might eat my taco meat with a baked potato instead of a flour tortilla. I have found that I usually don't react to corn tortillas. If we had sandwiches or burgers, I wrapped mine in a lettuce leaf. I am fortunate that raw fruits and vegetables do not usually give me problems. I had only been reacting for a few months (not years) before I was diagnosed. My gut must have healed fairly quickly and apparently my only intolerance is gluten.

My 24 year old daughter has discovered she cannot tolerate soy. I think she may be gluten intolerant also. She told me the other day she felt better after being GF for almost a week.

It helps to have a little humor with MC although it is no laughing matter.
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tex
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Post by tex »

Hi Judy,

Not to worry — you didn't offend me. I had a good chuckle from that. It just struck me as an odd way to begin a request for help. :lol:

Back when my symptoms began, my doctors couldn't figure out what was wrong with me (because my GI doc failed to take biopsies during the colonoscopy, and I didn't know any better back then either), so I had over four years to enjoy the symptoms before I finally figured out what was causing them, and managed to achieve remission. So trust me, I understand what it's like to try to figure out how to control the symptoms of this disease, when you're so sick that you can't think straight because of all the brain fog, and everything you eat seems to make you sick.

Carol's suggestions are right on target. This is a complex disease, and it's difficult to control, so it takes a while to learn what we need to know in order to be able to develop our own treatment program that will get us to where we want to be (healthy again). But by asking questions, learning from each other here, and living life a day at a time, we can get our life back.

If you don't want to use an elimination diet, followed by trial and error testing of foods, you can do what many of us do, and order a stool test kit from EnteroLab (in Dallas, TX). They offer the only tests that can reliably and accurately detect the type of food sensitivities that are associated with this disease. Most blood tests are typically too insensitive to provide any reliable results for us.

The test panel that provides antibody test results for gluten, casein (dairy), soy, and eggs (which are the main food sensitivities that many of us have to deal with) is listed as Panel A1. Many members also order Panel C1 (or order it later, if needed), which tests for antibodies to 11 additional common food sensitivities, corn, oats, rice, beef, chicken, pork, tuna, almond, walnut, cashew, white potato. Ordering both panels together can be done at a discounted price.

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

It's certainly possible to figure out our food sensitivities without spending the money on those tests, but if you can justify the expense, the tests will save a lot of time, and remove most of the doubts about whether or not certain foods are a problem.

And as Brenda posted, no matter how many food issues we may have, there are almost always numerous alternatives available that others here have found, to replace foods that we can't tolerate.

Again, welcome aboard, and I hope that you can find the solutions that you are seeking here.

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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Post by Leah »

Welcome Judy. We all know how over whelming this all can be. It's good that the Entocort is working for you, but the diet is what will heal you and enable you to get off the drugs. I was on them for a total of 6 months while I changed my diet. The first month was the full dose and as I got slightly constipated ( I know, hard to believe), I cut the dose. Then again, and again until I was off of it.

Tex is an expert and it might be wise to order his book. It's a great source of info. Just click on the picture of it on this page.

One diet does not fit all. That's what makes it so difficult. Almost all of us have to go gluten free. READ LABLES! That means nothing made with wheat, barley, or rye. It's hidden in many foods like soy sauce and licorice, so be careful. Dairy is the next most common intolerance, then soy, then eggs. I was able to get a lot of healing under my belt by taking out gluten and dairy ( FROM THE BIG FOUR). then there are the irritants. These are foods that are too hard on an inflamed gut, but could be tested back in when you feel better. Some of these include RAW fruits and veggies, beans and legumes, too much sugar or artificial sweeteners, acid and citrus, tomato products , spicy foods, maybe caffeine. Instead of fixating on what you CAN'T eat, it's best to just eat home cooked simple meals that mostly consist of meats, I ate eggs, white rice, potato, well cooked veggies like squash and green beans, GF Chex cereal with almond milk…..etc. We are all different though. I'm able to eat all meats, but some of us can't have some. I can eat rice and potatoes, some of us can't. After I got off of Entocort, I noticed that my stools were still loose ( even though I was down to once a day) and realized I was reacting to soy and it's cousins ( like peanuts), so I had to take those out.

If ou choose not to do the Enterolab testing, then my advise is to keep it as simple as you can while you try to heal your gut. Then down the road, test foods back in one at a time. IThe good news is that if you do choose to do the work now, you will be rewarded later. I am now able to eat small salads, white and black beans, a certain amount of sugar, popped corn, corn chips, potato chips, raw veggies, dark soy free chocolate, GF bread and crackers ( but I didn't try them for 6 months), hard alcohol, but only small amounts of fruit.

Well, I hope that info helps a bit. It's a place to start. keep reading and ask anything. We are here to help each other
Good luck
Leah
Judy1953
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Third try is a charm?

Post by Judy1953 »

Two drafts disappeared. I try again. They used to go to cyberspace now it's the toilet. :pigtail:
Thank you all. Tex, my doctor is friends with yours. Just eat white bread, rice, bananas, no raw vegetables and no fruit. Well, maybe that's a little better. She thinks I'm going overboard. Because there is no scientific proof, I shouldn't listen to people who have it. Sigh!
I decided to go gluten free and lactose free. I am able to eat crunchy rice crackers. Very tasty! I can eat meat in small portions and some cheddar and feta is lactose free. Cheddar is good on burgers and potatoes. I have to check some things over. I think salmon worked, tuna, so far eggs, mayo (but not overdone).
I haven't checked the ingredients on EmergenC. Does anyone know if it is okay? I was taking it when things were superbad. It's chock full of electrolytes and vitamins and is taken at most twice a day. I did it once a day and only when things were very loose.
I gag on mushy vegetables, overcooked meat and any kind of bean except green beans--except when they're rubbery.
Tex, I did mean blithe. You made it sound so simple and la-di-da that it irritated me because I had been reading about mushy vegetables that I gag on! And I'd already had to give up salad! No crunch left to life, I thought
BTW I thought popcorn was one of the worst things for colitis.
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Post by tex »

Judy,

When we have trouble breathing because of inflamed airways, what do we do to correct the problem? We stop breathing polluted air and we breathe clean, pure air, instead. When we have trouble digesting food because of inflamed guts, what do we do to correct the problem? We stop eating a diet polluted with foods that cause us to produce antibodies that cause inflammation, and we eat safe, pure, non-inflammatory foods, instead.

In life, the things that are easy to do, are usually hardly worth doing, because they are not very rewarding. And the bigger the rewards that result from lifestyle changes, the harder we have to work to accomplish them. But the decisions to make those changes are easy — they're as simple as, "Do I want to get my life back, or do I want to just learn to live with these symptoms and suffer for the rest of my life". Making that decision was a no-brainer for me. YMMV.

We can get the crunch back after we have been in remission long enough for our gut to heal, but during recovery, the only "crunch" that's safe doesn't come from raw vegetables — it comes from limited amounts of potato chips or corn chips (assuming that you're not sensitive to potatoes or corn).
Judy wrote:BTW I thought popcorn was one of the worst things for colitis.
It's not a good choice for active colitis, but Leah has been in remission for some time now, so as she mentioned, she has been able to add many foods back into her diet. She has her life back.

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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Post by Leah »

HI Judy.
We all know how it feels to not be able to eat foods that we love. I miss cheese so much, I sometimes want to cry. BUT, we all must make choices. If I want to be able to live my life without worrying about where a bathroom is or how embarrassing it would be to have to go at the wrong time in the wrong place…etc. THEN, I had to give some foods up. Life isn't always fair.

If you can possibly just think of the first year as the "healing time" you need, that might make it a bit easier to deal with eating so few foods. It's like having to take your medicine for a while. Once your gut heals, then you can test in some of the foods you have taken out.

It's true, I eat popcorn. I love it and pop it myself in coconut oil. I have discovered that in moderation, I can handle it now. Same goes for white, black, and kidney beans. I can also now consume spicy foods. AND SMALL SALADS, AND ALSO SMALL QUANTITIES OF FRUIT. I can also eat GF baked goods and sugar. Things have gotten better. Much better. Do I still react if I eat things I shouldn't? yes. But now, my gut bounces back quickly.

So I guess what I'm trying to say is if you do the work now, you won't have to work at it very hard down the road.

Good luck
Leah
Judy1953
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Beans

Post by Judy1953 »

Well, I've never eaten beans anyway. I think I'm still on trial with cheese. Rice is safe and I let rice crackers keep the crunch in life. It's my bread, cracker, celery, and lettuce :???: I'm not a spicy food eater but am a garlic lover. Do you know anything about that? It would sure help mushy vegetables!
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Post by Leah »

I have always been able to eat cooked onion and garlic… and you are right, it helps all food taste good :) I also eat rice crackers. I love Lundgren's rice chips too. I have always been OK with corn chips ( as long as no canola oil is used to fry them in), corn tortillas, and Chex GF cereals (with almond milk).

PS, I have never had to cook my veggies until they are mushy. i just make sure they are cooked. Now that I am mostly healed, I can now eat all veggies with little problems. Things DO get better :)

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Post by Spline Girl »

Dear Judy,
just two months ago I was just like you - desperately searching for information, because even Entocort did not seem to help any longer. I was fortunate to find this forum and it gave me hope. I always felt very bad fully relying on somebody or something else and having things completely out of my control. Finally, here was something I, myself, could do! Being a mathematician, I am a very logical person, - so I look for explanations, I look for correlations. Connections of MC, immune system response and diet made sense to me.
So two months ago I started the diet. I went gluten, dairy, soy free and reduced the fiber (no salads, no fruits in the beginning). I am very much like you - I love crunchy salads (my coworkers even tease me about it - that I eat bunny food) and cheese. But I felt so much better after the change and my taste buds got used to new flavors - I did not miss it much. Things do get better. After 3 weeks (was tapering off Entocort) I was able to introduce fresh juices (not much fiber left) - and it helped me tremendously, since I missed flavors of fruits and wanted to ensure proper intake of vitamins. I started conservative: one new fruit/veggie in a few days. And I diluted it with water. First I would put 1 portion of juice, and 2 portions of water. Now, I am off steroids and I put half juice/half water. I try to buy organic and make juices myself - though I am ok with store bought orange juice. I am also adding (1 mo into the diet) ginger and turmeric - they are supposed to be good for GI tract. My body took it well.
I make simple smoothies: almond milk, peanut butter, bananas, and protein (Vega brand from Whole Foods are plant based).
When possible I also try to not have the same food two days in a row - I rotate to avoid my body developing new intolerances.
Avoid alcohol. Avoid any artificial colorings and spice mixes.
I also avoid Nightshades, so for me the choice of the chips have been "Food should taste good" Sweet potato chips from Publix. Before I eliminated Nightshades I would make a lot of tomato sauces to go on my rice or fish - now I just make onion/mushrooms sauce and it is very tasty.

My current breakfast menu choices: certified gluten free oatmeal with homemade preserves, rice with preserves, gluten-free cereal (I like Honey Nut Chex) with almond milk, buckwheat (super nutritious) with almond milk, omelet (if you can eat eggs) with cauliflower and mushrooms, peanut butter sandwich (Udi's bread from TJ is very good).

Snacks could be smoothie, diluted juice, fruit bar (I found TJ GF froot bars that my body takes well), banana, avocado (I take it well). Baked apples or pears (add a bit honey) or - if not time - just apple sauce.

Lunch/dinner: there are so many stews and soups to make! combine it with rice/quinoa/buckwheat. I also steam or grill asparagus (tolerate very well), and sometimes other veggies (but avoid soy beans, peas, corn etc.). I sautee kale, spinach and other greens with olive oil and garlic. Before I went off Nightshades, I would make stuffed peppers (oh, so good and flavorful! stuffed with rice, turkey meat, carrots, and tomato sauce) or sautee eggplant with carrots and tomatoes (classic in our home). It does not have to be all "mushy". For instance, put asparagus with olive oil and garlic and roast it. Do the same with sweet potatoes, mushroom, zucchini etc.

I am on a liquid diet now (after jaw surrey) - that is when I get to eat "mushy". But "mushy" does not mean "tasteless". I made chicken soup, took out carrots, celery root and chicken meat - put in Vitamix to puree - very flavorful!

There are GF flour and crumbs - so I make delicious schnitzels and juicy chicken kotlets. Turkey meatballs with rice pasta.

All my recipes, by the way, are very simple and fast - I can't afford to spend too much time in the kitchen :)

As I said in my other post. My diet did not become dull. It just took some adjustment. Yes, in the beginning it might be more restrictive - while inflammation calms down and you learn to listen to you body and read the labels in the store it is a good idea to start conservative, but it does get better and you can bring some of your favorite flavors back in the diet quite soon.

Try not to a lot in the beginning and then introduce one by one. Don't try to reduce gluten or dairy or salads - eliminate it
and be conservative until you learn your triggers. This way inflammation will calm down faster than if you would eliminate particular foods one by one.

Good luck!
Love and Light to all!
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