Hi all!!! I've had my MC diagnosis for a week now and am trying to get educated....I also soooo want to feel a little better. I love these boards. One of my sons had cancer and that board was a God send. Thanks in advance to you all for being here.
I understand that I should be quite happy that my GI was able to diagnosis me so quickly. I have been suffering what I feel are God awful symptoms for 2 months now. I have had short term issues GI wise over the years.... MC? I don't know.
Presently, the doc has me taking immodium, pro biotics and citracel. He wanted me to follow that for 10 days and call him before starting on the samples of Lilapro that he gave me.... (I saw the name on this site can't remember it.) As of yesterday, I saw no change. D, exhaustion, horrible cramping....explosions! Yesterday, I felt miserable with a headache, dizzyness, off balance, in a fog, etc in addition to the other stuff. My urine has looked ok, but I thought perhaps I could be dehydrated, so I drank some gatorade..... my new best friend. I felt much better almost immediately.
I am so absolutely confused as to what I should be eating. I don't want to eat anything....and feel almost that I am developing an eating disorder. I dread eating! Doc told me to eat a normal diet except for spicy foods, roughage and dairy. He said that I didn't need to go gluten free and that it was hard to follow. I followed his suggested diet and it made no difference. Weeks ago, I tried nothing but boiled chicken and rice, chicken rice soup, bananas, potatoes.... and that didn't work then.... Crackers.... that didn't do it either. I have a tendency not to eat and have to force myself. Now craziest thing ever.... yesterday, feeling so awful, I ate a double cheeseburger from McDonalds...I don't do that, but I was craving salty.... and needed to eat something.... (my thoughts were that whatever I eat, it just tears through me anyway) Well..... lo and behold, the D stopped. I didn't go last night, not today.... Stomach hurts a little.... So, I have absolutely NO idea!!!!!
I have a roommate who is gluten free..... I was pretty much very low gluten for a while before the onset of these symptoms. I am not at all against giving up gluten. I also have had fibromyalgia for quite a while. I will definintely look into gluten free, test trial and error with any kind of sensitivities......
But for now.....today, tomorrow. What can I eat that will give me some relief? Be easy on my stomach? Give me some nourishment? Stop irritating my stomach? I know the McDonald's double cheeseburger is going to turn on me sooner or later. I will call the doc..... and I am sure he will put me on Lilapro.... Maybe I do need some medication for a while to bring down the inflammation. But what do I eat?????? Bananas, rice, chicken, applesauce?
Thanks for any advice!
A really NEW newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Misha.
The first thing I want to say is that we have all been there and anyone on this forum who has had success in getting symptoms under control has given up gluten 100%. It takes about four MONTHS for all the gluten half-life antibodies to rid themselves from your body, so you won't know it's helping maybe for a while. Your Fibromyalgia will probably slowly get better also :)
The second thing I want to say is that most doctors don't have a clue about the connection with food to MC. When our MC is triggered, it seems that so to are food intolerances. If you continue to eat the foods that your body is rejecting, the inflammation will never subside.The drugs can help temporarily, but you will likely relapse if you don't do the diet thing.
We are all a bit different in our food intolerances, but the main four ( in this order) are gluten, dairy, soy, and eggs. Some of us have issues with all grains, but I can eat white rice and corn products. Fiber is also a big no no when trying to heal. It's like rubbing sand paper on an open wound…. so beans and legumes, RAW FRUITS AND VEGGIES, and maybe whole nuts are pretty rough for now. I have been able to add some of these back in after healing. Caffeine, spicy, and citrus can also be a problem.
Pro-biotics can make matters worse. Very few of us here have gotten relief from them … and Citricel is fiber. Unless you are having C, I wouldn't take that either. The less "stuff" you take now, the better.
If you are looking for drug relief WHILE YOU WORK ON YOUR DIET, ENTOCORT ( BUDESONIDE) seems to be the most effective for us. I was on it for a total of 6 months… slowly weaning down the dose until I was off of it. During that time, I chose to take everything ( except eggs) out of my diet that COULD be a problem. So what did I eat? Mostly meats and fish, very COOKED veggies ( mostly squashes, carrots and green beans), white rice ( and it's products), homemade broths with meat and veggies, eggs, sweet potatoes, almond butter, Chex cereals with almond milk, avocado, black olives, and a little applesauce. Certain oils can be troublesome also. I stick to either olive or coconut oil.
Like I said, we are all different and you have to figure out what works for you. Keeping a food journal is a good idea. Down the road, you can fine tune your diet and after you have some healing under your belt, you can start testing things. I have added white potatoes, white and black beans, small salads and raw veggies back in, but it took more then a year to get there.
If you can afford it, there is a lab called ENTEROLAB ( look them up) that tests your stool for the main food intolerances if you want a short cut.
Aso, Tex ( our expert) has written a book that is a great resource and is easily ordered from Amazon if you click on the picture of it that is in the upper right hand corner of this page.
I'm sure other people will pipe in. This is a great forum full of wonderful people. The good news is if you take charge, and make changes, you can get your life back. it takes time and patience, but it's so worth it. I now only go once a day in the am ( just like i did pre-MC). Am I perfect? NO. If I eat/drink too much of something or eat something I shouldn't, or eat out and get contaminated, then I will react, but it is usually short lived and I know what I need to eat to feel better quickly. Not so bad :)
Good luck and keep us posted. Ask anything.
leah
The first thing I want to say is that we have all been there and anyone on this forum who has had success in getting symptoms under control has given up gluten 100%. It takes about four MONTHS for all the gluten half-life antibodies to rid themselves from your body, so you won't know it's helping maybe for a while. Your Fibromyalgia will probably slowly get better also :)
The second thing I want to say is that most doctors don't have a clue about the connection with food to MC. When our MC is triggered, it seems that so to are food intolerances. If you continue to eat the foods that your body is rejecting, the inflammation will never subside.The drugs can help temporarily, but you will likely relapse if you don't do the diet thing.
We are all a bit different in our food intolerances, but the main four ( in this order) are gluten, dairy, soy, and eggs. Some of us have issues with all grains, but I can eat white rice and corn products. Fiber is also a big no no when trying to heal. It's like rubbing sand paper on an open wound…. so beans and legumes, RAW FRUITS AND VEGGIES, and maybe whole nuts are pretty rough for now. I have been able to add some of these back in after healing. Caffeine, spicy, and citrus can also be a problem.
Pro-biotics can make matters worse. Very few of us here have gotten relief from them … and Citricel is fiber. Unless you are having C, I wouldn't take that either. The less "stuff" you take now, the better.
If you are looking for drug relief WHILE YOU WORK ON YOUR DIET, ENTOCORT ( BUDESONIDE) seems to be the most effective for us. I was on it for a total of 6 months… slowly weaning down the dose until I was off of it. During that time, I chose to take everything ( except eggs) out of my diet that COULD be a problem. So what did I eat? Mostly meats and fish, very COOKED veggies ( mostly squashes, carrots and green beans), white rice ( and it's products), homemade broths with meat and veggies, eggs, sweet potatoes, almond butter, Chex cereals with almond milk, avocado, black olives, and a little applesauce. Certain oils can be troublesome also. I stick to either olive or coconut oil.
Like I said, we are all different and you have to figure out what works for you. Keeping a food journal is a good idea. Down the road, you can fine tune your diet and after you have some healing under your belt, you can start testing things. I have added white potatoes, white and black beans, small salads and raw veggies back in, but it took more then a year to get there.
If you can afford it, there is a lab called ENTEROLAB ( look them up) that tests your stool for the main food intolerances if you want a short cut.
Aso, Tex ( our expert) has written a book that is a great resource and is easily ordered from Amazon if you click on the picture of it that is in the upper right hand corner of this page.
I'm sure other people will pipe in. This is a great forum full of wonderful people. The good news is if you take charge, and make changes, you can get your life back. it takes time and patience, but it's so worth it. I now only go once a day in the am ( just like i did pre-MC). Am I perfect? NO. If I eat/drink too much of something or eat something I shouldn't, or eat out and get contaminated, then I will react, but it is usually short lived and I know what I need to eat to feel better quickly. Not so bad :)
Good luck and keep us posted. Ask anything.
leah
Hi Misha,
Welcome to our internet family. Leah has written a great post covering the basics, so I don't have anything in particular to add to that at the moment. Your GI doc seems to be aware that diet does have an effect on dealing with MC, but he's confused about most of the details, and he's totally lost on the gluten sensitivity issue (probably due to the extremely poor sensitivity of the celiac blood tests that most doctors still use to screen for gluten sensitivity). Trust me, except for those of us who also have fully-developed celiac disease in addition to MC, the rest of us would all show a negative result to those unreliable blood tests, in spite of the fact that virtually all of us are just as sensitive to gluten as the average celiac.
The only tests that will accurately and reliably detect the type of food sensitivities that we have are the ones offered by the lab that Leah mentioned, EnteroLab. Most doctors are not willing to order those tests though, because they prefer to boycott labs that offer tests direct to the public (thereby cutting doctors out of the loop). Most of us just order the tests ourselves, but when we do that, most insurance companies will not pay for the tests. Of course, many insurance companies will not pay for the tests even if a doctor orders them, because they would rather spend many thousands of dollars on expensive treatments, than to spend a few hundred dollars on preventative measures.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Leah has written a great post covering the basics, so I don't have anything in particular to add to that at the moment. Your GI doc seems to be aware that diet does have an effect on dealing with MC, but he's confused about most of the details, and he's totally lost on the gluten sensitivity issue (probably due to the extremely poor sensitivity of the celiac blood tests that most doctors still use to screen for gluten sensitivity). Trust me, except for those of us who also have fully-developed celiac disease in addition to MC, the rest of us would all show a negative result to those unreliable blood tests, in spite of the fact that virtually all of us are just as sensitive to gluten as the average celiac.
The only tests that will accurately and reliably detect the type of food sensitivities that we have are the ones offered by the lab that Leah mentioned, EnteroLab. Most doctors are not willing to order those tests though, because they prefer to boycott labs that offer tests direct to the public (thereby cutting doctors out of the loop). Most of us just order the tests ourselves, but when we do that, most insurance companies will not pay for the tests. Of course, many insurance companies will not pay for the tests even if a doctor orders them, because they would rather spend many thousands of dollars on expensive treatments, than to spend a few hundred dollars on preventative measures.
Again, welcome aboard, and please feel free to ask anything.
Tex
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.
Thanks for the thorough reply. I believe I am in the right place. I downloaded the book last night... Phew! I have a lot of learning to do! For the first time in several months I went to the bathroom once in more than 24 hours! But I'm not right. I feel bloated, have some pain..... Something is wrong with me. Gluten sensitivity and maybe others definitely sound right on... I tried "gluten free" for a short time and didn't get overnight results with the fibro, so I didn't stick with it. I had no idea it took that long to get out of your system. This now in addition to the fibro are way more than anything I want to live with. I'm used to fatigue, but this exhaustion is awful. In the last few weeks, I've seriously thought I am going to have to retire early. Hopefully, I can get this under control...... I'll do what I gotta do
Thanks for the advice. I now have a starting point..... And this makes sense to me.
You'll hear from me again with a million questions....... I already feel empowered some in talking to the dr.
Thanks for being here and sharing what you know!
Thanks for the advice. I now have a starting point..... And this makes sense to me.
You'll hear from me again with a million questions....... I already feel empowered some in talking to the dr.
Thanks for being here and sharing what you know!
HI Misha, Welcome.
I just want to reinforce what Leah and Tex have said. Probiotics tend to make things worse for the vast majority of us, myself included. I am C prominent and they gave me D. When reacting, my diet had to be low fat and free of caffeine, sugar, artificial sweeteners, acidic food, fiber, plus free of gluten, soy, and dairy. Then when I was done taking Entocort (after 4.5 months) I found I was also reacting to egg but the Entocort was masking that. The key is to eat simply-- no sauces, gravies, or anything with multiple ingredients. Go with baked chicken and lean meats, well cooked vegetables like carrots, squash, green beans, cauliflower. I had to back off fruits and even now only eat fruit about every other day. I'm good with almonds and cashews so nut butters from these are okay. Initially I ate potatoes, sweet potatoes and white rice but I have since gone Paleo and have dropped those out.
I found that Gatorade or soft drinks contain so much sugar in the form of corn syrup that they tended to give me GERD. If I did drink Gatorade I thinned it with water. I remember also feel dehydrated most of the time. When I got tired of plain water, I would put fruit slices in my water-- strawberries and oranges mainly. Tea also seemed to give me GERD.
When it comes to supplements or vitamins, until your D is arrested, less is the way to go. The fewer supplements you take the better until your symptoms subside. This way you can keep track of what might be upsetting your gut and the fewer factors you have to deal with the better. Remember keep it simple. Most of us started out with 5 or 6 basic foods that were safe foods and added things one at a time (1 serving for 3 consecutive days) before declaring the new food a safe food. Make your plan and stay the course. It will pay off.
You'll find a wealth of info here and many people who have been where you are now.
Carol
I just want to reinforce what Leah and Tex have said. Probiotics tend to make things worse for the vast majority of us, myself included. I am C prominent and they gave me D. When reacting, my diet had to be low fat and free of caffeine, sugar, artificial sweeteners, acidic food, fiber, plus free of gluten, soy, and dairy. Then when I was done taking Entocort (after 4.5 months) I found I was also reacting to egg but the Entocort was masking that. The key is to eat simply-- no sauces, gravies, or anything with multiple ingredients. Go with baked chicken and lean meats, well cooked vegetables like carrots, squash, green beans, cauliflower. I had to back off fruits and even now only eat fruit about every other day. I'm good with almonds and cashews so nut butters from these are okay. Initially I ate potatoes, sweet potatoes and white rice but I have since gone Paleo and have dropped those out.
I found that Gatorade or soft drinks contain so much sugar in the form of corn syrup that they tended to give me GERD. If I did drink Gatorade I thinned it with water. I remember also feel dehydrated most of the time. When I got tired of plain water, I would put fruit slices in my water-- strawberries and oranges mainly. Tea also seemed to give me GERD.
When it comes to supplements or vitamins, until your D is arrested, less is the way to go. The fewer supplements you take the better until your symptoms subside. This way you can keep track of what might be upsetting your gut and the fewer factors you have to deal with the better. Remember keep it simple. Most of us started out with 5 or 6 basic foods that were safe foods and added things one at a time (1 serving for 3 consecutive days) before declaring the new food a safe food. Make your plan and stay the course. It will pay off.
You'll find a wealth of info here and many people who have been where you are now.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Misha - welcome.
I was in a similar state when I found this board. And I can honestly say these people saved my life! I felt as if I was on a escalator going backwards too fast, and had no where to turn to get off, or turned around.
I ate chicken and rice for about 3 weeks. Nothing improved. When I got my results from enterolab I found out that I was reacting badly to - you guessed it - chicken and rice as will as many other foods.
I have been working on this for 2 1/2 years, and am still unsure of which food does exactly what to me. At least I am not having D 24/7, and right now I am not having C for 3 weeks at a time, so something is feeling better, though I still get days when I am so exhausted I can't drag myself around, and I get cramps and bloating almost every day.
Many people here are much farther along than I am. Everyone works hard to get better, and everyone has issues with flares, some more, some less.
But EVERYONE, without exception, will do their utmost to help and advise you.
Ask whatever you like, and know that on this forum we discuss poop, farts, gas etc., with no embarrassment whatsoever. Do read as much as you can because there are answers to most questions you will have somewhere on this board.
I was in a similar state when I found this board. And I can honestly say these people saved my life! I felt as if I was on a escalator going backwards too fast, and had no where to turn to get off, or turned around.
I ate chicken and rice for about 3 weeks. Nothing improved. When I got my results from enterolab I found out that I was reacting badly to - you guessed it - chicken and rice as will as many other foods.
I have been working on this for 2 1/2 years, and am still unsure of which food does exactly what to me. At least I am not having D 24/7, and right now I am not having C for 3 weeks at a time, so something is feeling better, though I still get days when I am so exhausted I can't drag myself around, and I get cramps and bloating almost every day.
Many people here are much farther along than I am. Everyone works hard to get better, and everyone has issues with flares, some more, some less.
But EVERYONE, without exception, will do their utmost to help and advise you.
Ask whatever you like, and know that on this forum we discuss poop, farts, gas etc., with no embarrassment whatsoever. Do read as much as you can because there are answers to most questions you will have somewhere on this board.
During my weak, sickly time, I ate bacon by the ton. I needed the calories and salt and it tasted great plus, it didn't make my gut churn. I also used sugar to combat weakness and regain my wits. I suppose sugar is not good in the long run but it helped me to get a grip. I eventually found Silk coconut milk and that helped a lot. I ate rice in the beginning and soon added sweet potatoes. All plain meets and fish, except chicken, agree with me.
I am entirely gluten free and my fibromyalgia has lessened beyond my belief. When I turn over in bed, I continue to brace myself for the pain but it isn't there.
My advice, fry a few pounds of bacon and refrigerate what you don't eat. Cooked bacon microwaves very well. In all cases, read labels before buying!
Be gluten free. It's a learning process but the health rewards are important.
DJ
I am entirely gluten free and my fibromyalgia has lessened beyond my belief. When I turn over in bed, I continue to brace myself for the pain but it isn't there.
My advice, fry a few pounds of bacon and refrigerate what you don't eat. Cooked bacon microwaves very well. In all cases, read labels before buying!
Be gluten free. It's a learning process but the health rewards are important.
DJ
Misha!You already have been given excellent advice. I just wanted to acknowledge the fatigue.....it is part and parcel of MC. It was a major problem for me too, initially. It does get better but may take a while. I found it was 2 years after I started the diet until I had my normal energy back. Aren't you lucky to have a gluten-free roommate?
I agree with Carol about the Gatorade. Besides tons of corn syrup, there are other potential offenders - like dyes. You might check out the thread here on Dehydration and Electrolye Imbalance for other ideas. When I was having severe diarrhea, I would drink lots of water and lick a little sprinkled salt off my hand (for the sodium) and eat a little banana (for the potassium). Not very scientific but it worked!
Keep us posted on your progress.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I love bacon. DJ, have you tried baking it? It's soooo easy. Just preheat oven to 400 degrees. lay the slices on a foil lines sheet pan and bake for about 15 minutes ( depending on the thickness). drain ( save the fat to cook with) and put on paper towels. It bakes up straight and evenly cooked. No spattering. Little mess. I buy nitrite free bacon because of histamine issues and I can also only cook 2 days worth at a time because of the same reason, but I don't think I will ever go back to a frying pan again!
Misha, keeping frozen hamburger patties around is also very handy. I just cook them from the frozen state. My "comfort food" is hamburger and rice ( although I know that some can''t have rice). Today, I am making a meatball soup that my family loves :).
I love that you sound like you are ready to take this on. We are all rooting for you!
Leah
Misha, keeping frozen hamburger patties around is also very handy. I just cook them from the frozen state. My "comfort food" is hamburger and rice ( although I know that some can''t have rice). Today, I am making a meatball soup that my family loves :).
I love that you sound like you are ready to take this on. We are all rooting for you!
Leah
Hi Leah, I've pulled back from my good friend - Bacon. I could eat it by the pound, and I did. It provided salt and calories when I needed both. As you mentioned, the fat is also tasty for cooking. For people who leave food in the refrigerator for only a day or two, extra cooked bacon can be frozen and microwaved in portions. I really appreciated having something filling and satisfying so easily available during the time I experienced extreme fatigue.
The problem is that I've gained twelve pounds beyond what I lost when I was struggling.
Mr. Bacon and I meet less often now. I was becoming much to attached. I miss him. 
The problem is that I've gained twelve pounds beyond what I lost when I was struggling.
Mr. Bacon and I meet less often now. I was becoming much to attached. I miss him. Leah,
That's a little faster than frying bacon on a griddle. No spatter? Are you talking uniformly crisp bacon? I'll have to try that. My griddle may be headed for retirement in dumpster city.
Thanks for the tip.
Tex
P. S. FWIW, 4 slices with 2 eggs is twice as good.
That's a little faster than frying bacon on a griddle. No spatter?
Are you talking uniformly crisp bacon? I'll have to try that. My griddle may be headed for retirement in dumpster city. Thanks for the tip.
Tex
P. S. FWIW, 4 slices with 2 eggs is twice as good.
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.
Hi Leah, I have not resumed normal physical activity yet. Since MC, I have fatigue - actually, the fatigue seemed to start a little before the flood of MC. I was a person who could not sit still and now I can 
I was also a power walker and I had been going to the gym, on average, once a week with my hubby. I started with MC symptoms last March and two or three weeks later my hubby had a spring skiing accident and took out his ACL, MCL, and part of his meniscus. We have been in survival mode for a long time. I'm trying to make positive changes that will put me back in the game. Low energy is difficult.
I was also a power walker and I had been going to the gym, on average, once a week with my hubby. I started with MC symptoms last March and two or three weeks later my hubby had a spring skiing accident and took out his ACL, MCL, and part of his meniscus. We have been in survival mode for a long time. I'm trying to make positive changes that will put me back in the game. Low energy is difficult.