Today is my 1st day as a member on this site. Have had CC for 10 years but just lived with it! Just ignored the abd pain that I would often have after eating, and just accepted the daily D as part of the disease. Bad idea to ignore it! In March 2012 realized that the entire right side of my abdomen was distended -- and I mean so that it was REALLY OBVIOUS! I was scared to death as I thought I had a tumor! After CT scan of abd and pelvis, colonoscopy, endoscopy, UGI & SBFT, and lots of blood work, turns out that the chronic inflammation of my colon has done this to me. Trying to be realistic, I'm hoping that 6-12 months of medicine and diet might bring the OBVIOUS INFLAMMATION down.
Was immediately put on 9 mg Budesonide for 2 wk, 6 mg for 6 wk, and my pcp wants to do another 6 wk at 3 mg. I started doing some research hoping that if I changed my diet that I could turn this around. Have been following SCD since April 9. After browsing much information on this web site, I wonder if that is even the right way to go.
Especially interested in the MRT and Entercort testing. It would be nice to know that I am eliminating certain foods for a reason. It would be nice to bring back some foods that I am depriving myself of on the SCD diet if there is no need to eliminate them. It just seems logical that testing for food sensitivties is the way to go. I am pretty sure about being lactose intolerant, based on abd pain over the past year. I am not even able to tolerate the SCD "legal yogurt" as it causes pain.
Anyway, I am very impressed with this site and the amount of shared knowledge that is here. It is definitely overwhelming for a "newbie". Will continue trying to learn from the site.
New and Confused
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Welcome Nim18
you are in the right place. I've only had LC for 6 months but managed to turn things around by diet alone, with the help and advice of Tex and all the other true experts here. Soy, dairy ( the protein casein), eggs and glutin are no longer part of my diet and, even though I really was angry and in denial I am MUCH better off without them. Not only is my MC under control (95% of the time) but another autoimmune problem, psoriasis, is gone.
I can't address your meds since I so far am ok without them. But I'm sure you'll have others that can give you good feedback. The Enterolab tests were a good thing for me but I know you can discover your food sensitivities by elimination diet.
Chris
you are in the right place. I've only had LC for 6 months but managed to turn things around by diet alone, with the help and advice of Tex and all the other true experts here. Soy, dairy ( the protein casein), eggs and glutin are no longer part of my diet and, even though I really was angry and in denial I am MUCH better off without them. Not only is my MC under control (95% of the time) but another autoimmune problem, psoriasis, is gone.
I can't address your meds since I so far am ok without them. But I'm sure you'll have others that can give you good feedback. The Enterolab tests were a good thing for me but I know you can discover your food sensitivities by elimination diet.
Chris
Hi Mim,
Welcome to the board. More than a few of us here have had this disease for 10 years or longer, and most of us in that situation control our symptoms by diet changes alone. The diet changes are not easy at first, and it can take quite a while for the intestines to heal, especially if the inflammation has been ongoing for years, but diet changes are the safest way to treat the disease. It's the most effective way to treat the disease, also, for most of us, though some of the most severe cases also take a maintenance dose of Entocort or another medication, in addition to diet changes, because they have so many food sensitivities that they are unable to totally exclude all of them.
The biggest problem with the SCD is that lactose is just the tip of the dairy iceberg. Most of us here are sensitive to casein (the primary protein in dairy products, as Chris pointed out), which means that we react to yogurt, cheese, and all other dairy products. In addition, at least half of us are sensitive to soy and all it's relatives in the legume family.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. More than a few of us here have had this disease for 10 years or longer, and most of us in that situation control our symptoms by diet changes alone. The diet changes are not easy at first, and it can take quite a while for the intestines to heal, especially if the inflammation has been ongoing for years, but diet changes are the safest way to treat the disease. It's the most effective way to treat the disease, also, for most of us, though some of the most severe cases also take a maintenance dose of Entocort or another medication, in addition to diet changes, because they have so many food sensitivities that they are unable to totally exclude all of them.
The biggest problem with the SCD is that lactose is just the tip of the dairy iceberg. Most of us here are sensitive to casein (the primary protein in dairy products, as Chris pointed out), which means that we react to yogurt, cheese, and all other dairy products. In addition, at least half of us are sensitive to soy and all it's relatives in the legume family.
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.
Hi Mim18 ( is Mim your name?) You have come to the right place. I was dx with CC at the beginning of February. Started taking Entocort ( Budesonide) in March at 3 per day. Was down to one pretty solid BM a day, so I went down to 2 pills in April ( you have to do it slowly by the way) . I have had one flare since and had to go back up to three for two weeks. Now, I am back down to two. Feeling pretty good and hoping to get down to one in June. I have been DF for 4 months and GF for 3. I also have not had any fresh fruits or veggies, nor any tomato products for a while. They just aggravate right now. I am still adjusting to this new life style, but the diet means EVERYTHING! It takes time to heal. Patience is very important.
Before you spend the money to get the Enterolab tests, please ask your doctor to blood test your IgA antibody level. I made the mistake of paying $700 for the Enterolab tests only to find out that I am IgA deficient. I don't produce any. Since IgA levels is what is looked for in these tests, I got no answers :( I have not gotten rid of eggs or soy yet since i am not sure I need to.
Take it step by step and just know that you can heal your intestines. It takes time. Some heal faster then others and everyone has different experiences with this disease. Please ask any questions. We are here for you.
Leah
Before you spend the money to get the Enterolab tests, please ask your doctor to blood test your IgA antibody level. I made the mistake of paying $700 for the Enterolab tests only to find out that I am IgA deficient. I don't produce any. Since IgA levels is what is looked for in these tests, I got no answers :( I have not gotten rid of eggs or soy yet since i am not sure I need to.
Take it step by step and just know that you can heal your intestines. It takes time. Some heal faster then others and everyone has different experiences with this disease. Please ask any questions. We are here for you.
Leah
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi there! 
Finding this forum was momentous for me--I finally started getting some answers, and eventually, some relief! It's a slow process, but everyone here will help you through it. There are several here who are a real wealth of information, so don't be afraid to ask questions!
Good luck on your journey!!
Finding this forum was momentous for me--I finally started getting some answers, and eventually, some relief! It's a slow process, but everyone here will help you through it. There are several here who are a real wealth of information, so don't be afraid to ask questions!
Good luck on your journey!!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Welcome Mim!
In addition to what Leah said, I'm wondering if you were ever tested for celiac disease? If you had the blood tests, they include a test of your total IgA, so you can find out if your levels are normal. If you havent had the celiac bloodwork, please do!! MC is very common in celiac disease. Most people here test negative, but it only means we don't have a raging case with lots of villi damage. Most of us are just as sensitive to gluten as the average symptomatic celiac.
In addition to what Leah said, I'm wondering if you were ever tested for celiac disease? If you had the blood tests, they include a test of your total IgA, so you can find out if your levels are normal. If you havent had the celiac bloodwork, please do!! MC is very common in celiac disease. Most people here test negative, but it only means we don't have a raging case with lots of villi damage. Most of us are just as sensitive to gluten as the average symptomatic celiac.
Many thanks to everyone for welcoming me and wishing me luck on this journey. MIM can be a nickname. Those are my initials. My real name is Marion. I'll answer to either.
Leah, ten years ago I had the test for celiac disease. It was negative then. I wonder if it is worth repeating. After all, the damage now is far worse than it was 10 years ago. Thanks for your comment on Enterolab. I guess I'd love to get both the MRT and Enterolab tests, but they are expensive, and maybe trial and error will work just as well. My husband is very supportive of my diet changes, but he's reluctant at this point regarding my ordering the expensive tests.
Tex, I thought I had eliminated soy. Guess I have to read ALL of the fine print. My Calcium with D (Nature's Bounty soft capsules) includes soybean oil and soy lecithin in "other ingredients". I am confident that I will be able to find a brand that is free of soy. Is there an easy way to figure out my casein sensitivity?
It really is hard to make major changes in my diet. I know I need to stay with it if I want to continue doing well when the meds are tapered off. I am having lots of meat, fish, and fresh cooked vegetables (but no potatoes). Nothing processed. I think I am OK with eggs and cheddar cheese. Also seem to be OK with salads with home made dressings and applesauce with no sugar added. Would I react to things right away while I am on the meds, or will the real test be after I get off the meds? Am I incluing too many things too soon?
It really is great to have a site where others understand what one is going through!
Thanks again for all of your support,
Marion
Leah, ten years ago I had the test for celiac disease. It was negative then. I wonder if it is worth repeating. After all, the damage now is far worse than it was 10 years ago. Thanks for your comment on Enterolab. I guess I'd love to get both the MRT and Enterolab tests, but they are expensive, and maybe trial and error will work just as well. My husband is very supportive of my diet changes, but he's reluctant at this point regarding my ordering the expensive tests.
Tex, I thought I had eliminated soy. Guess I have to read ALL of the fine print. My Calcium with D (Nature's Bounty soft capsules) includes soybean oil and soy lecithin in "other ingredients". I am confident that I will be able to find a brand that is free of soy. Is there an easy way to figure out my casein sensitivity?
It really is hard to make major changes in my diet. I know I need to stay with it if I want to continue doing well when the meds are tapered off. I am having lots of meat, fish, and fresh cooked vegetables (but no potatoes). Nothing processed. I think I am OK with eggs and cheddar cheese. Also seem to be OK with salads with home made dressings and applesauce with no sugar added. Would I react to things right away while I am on the meds, or will the real test be after I get off the meds? Am I incluing too many things too soon?
It really is great to have a site where others understand what one is going through!
Thanks again for all of your support,
Marion
Hi Marion,
At the suggestion of others here, I have switched to a brand of vitamin called Freeda, (GF, lactose/YF, no added sugars, starches, animal derivatives or gelatin)which I buy online. I am 60 y/o, and they advise no addl iron, so I take the high potency iron-free quintab vitamin, plus addl vitamin D supplements. I also take a probiotic from a website called Renew Life, also recommended by folks here, called Ultimate Flora Senior formula, and feel I've done better with it. (Contains no wheat, gluten, soy, dairy, eggs, shellfish, tree nuts. BUT, it is manufactured in a facility that processes products with the first four of those ingredients, so highly reactive folks might want to find something else.)
For calcium, I use Citracal Petites. Just looked at the ingredients, which do not seem to include soy, unless it's going by a name I don't recognize.
At the suggestion of others here, I have switched to a brand of vitamin called Freeda, (GF, lactose/YF, no added sugars, starches, animal derivatives or gelatin)which I buy online. I am 60 y/o, and they advise no addl iron, so I take the high potency iron-free quintab vitamin, plus addl vitamin D supplements. I also take a probiotic from a website called Renew Life, also recommended by folks here, called Ultimate Flora Senior formula, and feel I've done better with it. (Contains no wheat, gluten, soy, dairy, eggs, shellfish, tree nuts. BUT, it is manufactured in a facility that processes products with the first four of those ingredients, so highly reactive folks might want to find something else.)
For calcium, I use Citracal Petites. Just looked at the ingredients, which do not seem to include soy, unless it's going by a name I don't recognize.
Suze
Back when I was trying to figure out my sensitivities, I did it by trying Breyer's Lactose-Free Ice Cream (it's free of lactose, but loaded with casein).Marion wrote:Is there an easy way to figure out my casein sensitivity?
Budesonide will suppress MC symptoms for most people, so it can mask food sensitivities. A few people with MC can take budesonide and eat virtually anything without reacting, while others may continue to react to gluten or casein or soy, etc., even while taking it. Everyone has different symptoms, everyone responds differently to various medications, and everyone responds differently to diet changes, (some take much longer to see progress, due to differences in healing rates, for example).Marion wrote:Would I react to things right away while I am on the meds, or will the real test be after I get off the meds?
The final test comes approximately 8 weeks after completely discontinuing budesonide. If you can maintain remission past that point, you are probably home free.
Salads are highly problematic for most of us until our gut has had some time to heal. Fiber in general is highly contraindicated for anyone with MC. Iceberg lettuce is without question the most irritating vegetable we can eat, while our intestines are hypersensitive as a result of all the inflammation.
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.
Hi MIM,
Welcome to our "potty people" family. Budesonide helped me immensely when I was first diagnosed. I still need to take Budesonide at times when my gut is acting up. Tex is correct in saying that while on Budesonide you may be fooled into thinking you can eat many items safely but you really need to follow the diet pretty strictly to stay in remission. I've learned this the hard way. There have been times I did not trust anything I put in my mouth. Mostly though, thanks to the diet advise I have gotten here, my life goes along in a functional manner.
Welcome to our "potty people" family. Budesonide helped me immensely when I was first diagnosed. I still need to take Budesonide at times when my gut is acting up. Tex is correct in saying that while on Budesonide you may be fooled into thinking you can eat many items safely but you really need to follow the diet pretty strictly to stay in remission. I've learned this the hard way. There have been times I did not trust anything I put in my mouth. Mostly though, thanks to the diet advise I have gotten here, my life goes along in a functional manner.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Thank you all for the new tips. My new shopping list will reflect all of the suggestions.
Tex, the ice cream sounds like a wonderful way to check for casein sensitivity. Will let you know. I suspect that I may have do do the test twice. Now, and 8 weeks after I'm off the budesonide. And I will curtail the lettuce and fiber.
Suze, I will check out the Citracal and the Freeda. Both sound good.
And I made some progress today. Managed to make a picture small enough so I could use it as my avatar.
Right now I think I'll spend some time looking at the recipes on this site (before I go to the store).
Marion
Tex, the ice cream sounds like a wonderful way to check for casein sensitivity. Will let you know. I suspect that I may have do do the test twice. Now, and 8 weeks after I'm off the budesonide. And I will curtail the lettuce and fiber.
Suze, I will check out the Citracal and the Freeda. Both sound good.
And I made some progress today. Managed to make a picture small enough so I could use it as my avatar.
Right now I think I'll spend some time looking at the recipes on this site (before I go to the store).
Marion
Hi Mim. the word "react" can mean different things. I am still on Budesonide ( 2) and have to figure out what I am sensitive to through trial and error also. You have to REALLY pay attention to your intestines when you eat something and not just use D as an indicator. Yesterday, I sprinkled some GF granola onto my GF Chex cereal. ( it has oats in it). Although I didn't get D, I did notice more right side intestinal "tenderness". Tenderness=inflammation. So, I am off of oats I think. I may test it one more time to be sure, but the better you start feeling, the more you can tell when things don't seem right.
I didn't mean to scare you away from the testing. I just wanted you to know about the IgA connection. Enterolab does have the "big four" (gluten, casein,soy,eggs) test for about $350 I think.
Keep us posted
Leah
I didn't mean to scare you away from the testing. I just wanted you to know about the IgA connection. Enterolab does have the "big four" (gluten, casein,soy,eggs) test for about $350 I think.
Keep us posted
Leah
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome Marion,
Sorry to hear how difficult things have gotten for you, but you have come to the right place for wisdom and support. Many here have been there, done that, so feel free to ask questions.
You are obviously a "strong" person - just living with the symptoms and the pain for as long as you did is a sign of that.
Happy shopping! There are a lot of great recipes here.
Paula
Sorry to hear how difficult things have gotten for you, but you have come to the right place for wisdom and support. Many here have been there, done that, so feel free to ask questions.
You are obviously a "strong" person - just living with the symptoms and the pain for as long as you did is a sign of that.
Happy shopping! There are a lot of great recipes here.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Leah, I think I should keep a food diary and note on the side if I have symptoms a few hours later. Prior to all of the testing and the budesinide, it was getting to the point where just about everything gave me abd pain, and sometimes even without eating I'd have that right sided pain. That is improving. Just thrilled to find ways to figure out what does and does not bother me.
Cory (is that the name you like to be called?), thanks for sharing. It looks like I have a long road ahead of me.
Actually, I want to thank everyone for sharing! It is all helping to keep me in focus!
Marion
Cory (is that the name you like to be called?), thanks for sharing. It looks like I have a long road ahead of me.
Actually, I want to thank everyone for sharing! It is all helping to keep me in focus!
Marion