st bunch of people here....and ...... Hugs Omanew to site --- possible MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
-
Liz
- Rockhopper Penguin
- Posts: 1540
- Joined: Tue Sep 13, 2005 5:23 pm
- Location: Qld Australia
- Contact:
Hello Laura. I don't have a lot to add to what the others have said except I would like to welcome you too. I was diagnosed with CC in July 2001 & have a varied journey since then. Am a bit up & down with it at the moment but am working with my doc to get it under control without having to resort to cortisone again.
You have come to the right place where you will find heaps of support & information as well as many laughs.
Love
Liz
You have come to the right place where you will find heaps of support & information as well as many laughs.
Love
Liz
A smile is a light in the window of your face that shows that your heart is at home
Laura,
Your comment about feeling so alone when you received your celiac diagnosis, brought back some vivid memories. Before I came across this on-line family, that's exactly how I felt--alone. I felt like a misfit, and an outcast, (sorta like a leper). My GI didn't offer any help at all. I tried the GF diet on my own, and when that didn't solve all my problems, I decided that I must be some kind of freak of nature.
Then, one day I accidently found this group, and after reading a few posts, my first thought was "Wow! These people are just like me." I was absolutely blown away. Suddenly, the sun was back in the sky, if you know what I mean.
Ok, now to answer a few questions: Asacol is mesalamine, which is a derivative of salicylic acid and is thought to be the active component of sulfasalazine (Azulfidine). It is not a cortocosteroid. It is one of the mildest meds which has been shown to reduce the inflammation typically present with Inflammatory Bowel Diseases, (IBDs). (MC is an IBD, though not as severe as the other IBDs, Crohn's disease and ulceratoive colitis). Mesalamine does not contain sulfites, though sulfasalazine does, (obviously). Technically, since it is salacylic acid based, I suppose that mesalamine would have to be classified as an NSAID, which are contraindicated, for MC, (though many MC patients have found relief through the use of mesalamine). Someone correct me here, if I'm wrong about it being an NSAID.
Your problem with turkey lunch meat, could indicate a possible corn intolerance. Almost all lunch meats contain dextrose, a corn derivative. Or there could be some other ingredient on the label that caused the problem. If you haven't already done so, it might be a good idea to print out the lists of derivatives for the various intolerance foods that Jean has posted in the Information on Diet forum, (down toward the bottom). http://www.perskyfarms.com/phpBB2/viewforum.php?f=6 I think she has detailed lists for dairy, corn, and soy, in addition to gluten, (which I'm sure you are already well acquainted with), plus a combined list.
It's not likely that any of the meds you are taking would mask the markers of MC under a microscope, which is where the diagnosis will be made. The pathologist will be looking for lymphocytic infiltration between the cells of the epithelial layer, (the surface layer), of the mucosa of your colon, (in the case of LC), or a thickened collagen layer, below the epithelial layer, (in the case of CC). If both markers are present, the diagnosis is usually just MC.
I would think that your GI would inform you if/when he wants you to stop taking those meds as you near the time for the colonoscopy. As far as the colonoscopy goes, the prep is the worst part of it The stuff that you have to drink to clean out, made me sick every time, no matter which one they recommended, and I'll bet that almost everyone here will agree with that. I think that a new one, with less unpleasant side-effects, has been developed, but I don't know if it's available yet.
Tex
Your comment about feeling so alone when you received your celiac diagnosis, brought back some vivid memories. Before I came across this on-line family, that's exactly how I felt--alone. I felt like a misfit, and an outcast, (sorta like a leper). My GI didn't offer any help at all. I tried the GF diet on my own, and when that didn't solve all my problems, I decided that I must be some kind of freak of nature.
Then, one day I accidently found this group, and after reading a few posts, my first thought was "Wow! These people are just like me." I was absolutely blown away. Suddenly, the sun was back in the sky, if you know what I mean.
Ok, now to answer a few questions: Asacol is mesalamine, which is a derivative of salicylic acid and is thought to be the active component of sulfasalazine (Azulfidine). It is not a cortocosteroid. It is one of the mildest meds which has been shown to reduce the inflammation typically present with Inflammatory Bowel Diseases, (IBDs). (MC is an IBD, though not as severe as the other IBDs, Crohn's disease and ulceratoive colitis). Mesalamine does not contain sulfites, though sulfasalazine does, (obviously). Technically, since it is salacylic acid based, I suppose that mesalamine would have to be classified as an NSAID, which are contraindicated, for MC, (though many MC patients have found relief through the use of mesalamine). Someone correct me here, if I'm wrong about it being an NSAID.
Your problem with turkey lunch meat, could indicate a possible corn intolerance. Almost all lunch meats contain dextrose, a corn derivative. Or there could be some other ingredient on the label that caused the problem. If you haven't already done so, it might be a good idea to print out the lists of derivatives for the various intolerance foods that Jean has posted in the Information on Diet forum, (down toward the bottom). http://www.perskyfarms.com/phpBB2/viewforum.php?f=6 I think she has detailed lists for dairy, corn, and soy, in addition to gluten, (which I'm sure you are already well acquainted with), plus a combined list.
It's not likely that any of the meds you are taking would mask the markers of MC under a microscope, which is where the diagnosis will be made. The pathologist will be looking for lymphocytic infiltration between the cells of the epithelial layer, (the surface layer), of the mucosa of your colon, (in the case of LC), or a thickened collagen layer, below the epithelial layer, (in the case of CC). If both markers are present, the diagnosis is usually just MC.
I would think that your GI would inform you if/when he wants you to stop taking those meds as you near the time for the colonoscopy. As far as the colonoscopy goes, the prep is the worst part of it The stuff that you have to drink to clean out, made me sick every time, no matter which one they recommended, and I'll bet that almost everyone here will agree with that. I think that a new one, with less unpleasant side-effects, has been developed, but I don't know if it's available yet.
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.
Laura, you asked "What is asacol? Is it a steroid? What symptoms do you have and what does it help?"
Tex has graciously answered the first two questions. I'm glad because he is better at it than I am.
At onset my symptoms were horrible nausea, vomiting, dry heaves, explosive watery diarrhea. Somewhere along the line body aches and muscle soreness entered the picture.
My doc first put me on prednisone and asacol. The idea being that the pred would get the MC under control quickly (it did) and then I could come off that and just be on asacol. Pred is the usually the quickest way to get symptoms under control but I DO NOT recommend it. I'll never take it again unless I have absolutely no choice. I had a hard time coming off it and gained 40 lbs to boot (which I still have). I told the doc I was coming off pred no matter what so he started decreasing the pred and put me on Entocort. I had no trouble with the transition and I'd take Entocort again if needed.
I have been on just Asacol alone for about 1 1/2 years now I believe. I started on 6 per day. I cut it down to 4. I have periods where I do quite well but I've never gotten rid of the body aches and such. I sometimes still have D but not often and even more rarely do I have nausea.
I do believe if I were faithful with my diet that all would be well. Why don't I???? Good question. *shrug*
Anyway, I believe you have a lot more will power than I do and I know you will receive a lot of help here tracing down your intolerances, etc. You are going to do well, I have no doubt.
So glad you found us.
Love, Shirley
Tex has graciously answered the first two questions. I'm glad because he is better at it than I am.
At onset my symptoms were horrible nausea, vomiting, dry heaves, explosive watery diarrhea. Somewhere along the line body aches and muscle soreness entered the picture.
My doc first put me on prednisone and asacol. The idea being that the pred would get the MC under control quickly (it did) and then I could come off that and just be on asacol. Pred is the usually the quickest way to get symptoms under control but I DO NOT recommend it. I'll never take it again unless I have absolutely no choice. I had a hard time coming off it and gained 40 lbs to boot (which I still have). I told the doc I was coming off pred no matter what so he started decreasing the pred and put me on Entocort. I had no trouble with the transition and I'd take Entocort again if needed.
I have been on just Asacol alone for about 1 1/2 years now I believe. I started on 6 per day. I cut it down to 4. I have periods where I do quite well but I've never gotten rid of the body aches and such. I sometimes still have D but not often and even more rarely do I have nausea.
I do believe if I were faithful with my diet that all would be well. Why don't I???? Good question. *shrug*
Anyway, I believe you have a lot more will power than I do and I know you will receive a lot of help here tracing down your intolerances, etc. You are going to do well, I have no doubt.
So glad you found us.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi again Laura!
Just a few more thoughts:
Many Applegate Farms deli meats contain carrageenan, which is one of my intolerances. I found this out originally when I substituted nut milk for regular and soy milks and found that I kept having D. It was the carrageenan. Also, A.F. deli meats use either beet or corn sugar - and corn is one of the more common intolerances.
The biopsies should pick up the MC, if they do multiple ones. Crohn's does not really need biopsies - it can usually be seen with the naked eye during colonoscopy. But MC can ONLY being diagnosed by looking at a biopsy specimen under the microscope.
If you have never had a colonoscopy, you will find that Wayne is correct. The actual procedure is a breeze (as long as you are under general anesthesia) - it's the cleanout that sucks. ROYALLY! LOL! The stuff you have to drink is SWAMP WATER. On the evening when I had my last colonoscopy cleanout, I kept coming here to report my progress (and to rant and rave), and everyone was so supportive and empathetic. Feel free to do the same.
It's really hard to do the elimination diet when you are having constant D. How the heck can you determine what your triggers are i.e. what you are reacting to, when the D is constant??? LOL! Some here recommend eating a low immunolgenic diet (like the paleo or caveman) diet for a while to heal the gut some before trying the elimination diet.
Great to have you in the family!
Love,
Polly
Just a few more thoughts:
Many Applegate Farms deli meats contain carrageenan, which is one of my intolerances. I found this out originally when I substituted nut milk for regular and soy milks and found that I kept having D. It was the carrageenan. Also, A.F. deli meats use either beet or corn sugar - and corn is one of the more common intolerances.
The biopsies should pick up the MC, if they do multiple ones. Crohn's does not really need biopsies - it can usually be seen with the naked eye during colonoscopy. But MC can ONLY being diagnosed by looking at a biopsy specimen under the microscope.
If you have never had a colonoscopy, you will find that Wayne is correct. The actual procedure is a breeze (as long as you are under general anesthesia) - it's the cleanout that sucks. ROYALLY! LOL! The stuff you have to drink is SWAMP WATER. On the evening when I had my last colonoscopy cleanout, I kept coming here to report my progress (and to rant and rave), and everyone was so supportive and empathetic. Feel free to do the same.
It's really hard to do the elimination diet when you are having constant D. How the heck can you determine what your triggers are i.e. what you are reacting to, when the D is constant??? LOL! Some here recommend eating a low immunolgenic diet (like the paleo or caveman) diet for a while to heal the gut some before trying the elimination diet.
Great to have you in the family!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
Do you happen to remember the name of that prep that I'd read about somewhere in an article. It said that something in particular was the mildest prep. The idea was not to do harm with the prep itself, if you remember. May have been making the rounds on the internet news sites at the time.
Thanks, Luce
Do you happen to remember the name of that prep that I'd read about somewhere in an article. It said that something in particular was the mildest prep. The idea was not to do harm with the prep itself, if you remember. May have been making the rounds on the internet news sites at the time.
Thanks, Luce
Ok, y'all are just the sweetest.
I luckily have that fleet stuff to take---lucky that it is the "better" of the two. I think its funny that I will still be taking bentyl (to help stop the D) and then this fleet stuff (to encourage the D). Anyone find the irony in this?
I will definitely add carrageenan to my list of "possibilities." I must say, I am happy to hear you say "How the heck can you determine what your triggers are i.e. what you are reacting to, when the D is constant???" That is exactly how I feel. Right now, I'm getting by -barely- with the Bentyl. I figure I'll wait to see what happens with the colonoscopy and go from there. I like having the facts in front of me (i.e., could be this, couldn't be that, ruled that out, etc.) so I can make decisions. I was just kind of pushed along during the Celiac process and want to avoid the mistakes I made then.
Ok, so I know that everyone who doesn't have celiac/gluten intolerance says "Oh, I would die without bread." And, I felt like that once, but obviously, I can do just fine with out it. BUT---the thought of being corn intolerant and not drinking my beloved COKE makes me want to cry!!!!!!!!
Goodness, that might be my worst nightmare. Ok, a close second to that would be dairy/casein. I love my milk, ice cream, and cheese! Obviously, if that's what it comes down to, I'll do whatever I have to----but wow, there will be some serious mourning going on! Its amazing the things that we thought we would never have to do....swore we'd never do it....but when it gives you your life back, you know you'd do it in a second. Your perspective really changes.
I have had a partial colonoscopy (before Celiac dx, when they were just flat out puzzled)---so I somewhat know what to expect, but still, that doesn't make it any more fun! Luckily my sweet husband will be joining me and he is the best when I wake up from the sedation. So comforting to see a face you love!
Starfire---a lot of your symptoms sound like mine. Thanks for sharing and for the info on the drugs. I was on prednisone twice when I had mono and I am NOT a fan of it---I felt like I was hungover for 2 weeks. I am hoping to avoid it from now on, based on my experience and what I have heard from others. What intolerances do you have? I would be willing to bet that you have a lot of strength in you---sometimes for me, I know it just needs a little "coaxing"....aka kick in the pants from my husband or mom
Tex---it is comforting to read such well-written sentiments. Certainly describes how I feel. I think, I'm 25 years old, I should not have to worry about ANY of these things. On the other hand, I'm rather take care of them now, before we have children. Thanks for the explanation of the drugs and what the dr. is searching for.
Tessa, Herblady, and liz--thank you for the welcome. I went home and told my husband, "you wouldn't believe all the help I have gotten! Everyone is saying hi!" He even went on it to read the responses. He replied, "So, according to EVERYONE, you have another food intolerance!" We both have to laugh, because I must admit, that was last on my list of things I wanted...I feel like my gluten free diet is manageable bc it is the only (known) issue that I have....take things away and I could get cranky
Ok-question to all. So we know that Celiac is much more common than once believe....latest numbers are 1 in 133 according to Dr. Fassano. How many of the people on here are Celiacs? Also, something I haven't seen at all---how common is MC? There seems to be a lot of research out there on UC and Crohn's, but is MC the forgotten GI disease?! I think that I am pretty educated on Celiac and had never heard about its association until this board/Dr. Green's book.
Another question--kind of two-pronged. Does everyone with MC by default have food intolerances? For those with food intolerances, how soon do you know if you ate something. I have nailed down my gluten reaction, but I have heard that other intolerances can be delayed. What are your experiences?
That's all for now----xoxo
I luckily have that fleet stuff to take---lucky that it is the "better" of the two. I think its funny that I will still be taking bentyl (to help stop the D) and then this fleet stuff (to encourage the D). Anyone find the irony in this?
I will definitely add carrageenan to my list of "possibilities." I must say, I am happy to hear you say "How the heck can you determine what your triggers are i.e. what you are reacting to, when the D is constant???" That is exactly how I feel. Right now, I'm getting by -barely- with the Bentyl. I figure I'll wait to see what happens with the colonoscopy and go from there. I like having the facts in front of me (i.e., could be this, couldn't be that, ruled that out, etc.) so I can make decisions. I was just kind of pushed along during the Celiac process and want to avoid the mistakes I made then.
Ok, so I know that everyone who doesn't have celiac/gluten intolerance says "Oh, I would die without bread." And, I felt like that once, but obviously, I can do just fine with out it. BUT---the thought of being corn intolerant and not drinking my beloved COKE makes me want to cry!!!!!!!!
Goodness, that might be my worst nightmare. Ok, a close second to that would be dairy/casein. I love my milk, ice cream, and cheese! Obviously, if that's what it comes down to, I'll do whatever I have to----but wow, there will be some serious mourning going on! Its amazing the things that we thought we would never have to do....swore we'd never do it....but when it gives you your life back, you know you'd do it in a second. Your perspective really changes.I have had a partial colonoscopy (before Celiac dx, when they were just flat out puzzled)---so I somewhat know what to expect, but still, that doesn't make it any more fun! Luckily my sweet husband will be joining me and he is the best when I wake up from the sedation. So comforting to see a face you love!
Starfire---a lot of your symptoms sound like mine. Thanks for sharing and for the info on the drugs. I was on prednisone twice when I had mono and I am NOT a fan of it---I felt like I was hungover for 2 weeks. I am hoping to avoid it from now on, based on my experience and what I have heard from others. What intolerances do you have? I would be willing to bet that you have a lot of strength in you---sometimes for me, I know it just needs a little "coaxing"....aka kick in the pants from my husband or mom
Tex---it is comforting to read such well-written sentiments. Certainly describes how I feel. I think, I'm 25 years old, I should not have to worry about ANY of these things. On the other hand, I'm rather take care of them now, before we have children. Thanks for the explanation of the drugs and what the dr. is searching for.
Tessa, Herblady, and liz--thank you for the welcome. I went home and told my husband, "you wouldn't believe all the help I have gotten! Everyone is saying hi!" He even went on it to read the responses. He replied, "So, according to EVERYONE, you have another food intolerance!" We both have to laugh, because I must admit, that was last on my list of things I wanted...I feel like my gluten free diet is manageable bc it is the only (known) issue that I have....take things away and I could get cranky
Ok-question to all. So we know that Celiac is much more common than once believe....latest numbers are 1 in 133 according to Dr. Fassano. How many of the people on here are Celiacs? Also, something I haven't seen at all---how common is MC? There seems to be a lot of research out there on UC and Crohn's, but is MC the forgotten GI disease?! I think that I am pretty educated on Celiac and had never heard about its association until this board/Dr. Green's book.
Another question--kind of two-pronged. Does everyone with MC by default have food intolerances? For those with food intolerances, how soon do you know if you ate something. I have nailed down my gluten reaction, but I have heard that other intolerances can be delayed. What are your experiences?
That's all for now----xoxo
Celiac Disease
HaHaHaHa......Had to laugh when I read what you wrote......."What intolerances do you have? I would be willing to bet that you have a lot of strength in you"
I can't really say what intolerances I have because I've always been on meds. I can say that I do better if I don't eat a lot of gluten so I'm 95% sure I'm gluten intolerant. Other than that, I have no idea. I have been tempted several time to do Dr. Fine's tests but haven't yet because I don't know if I have enough will power go off the meds and stick faithfully to the diet. I was doing great on the Paleo (hunter/gatherer) diet for a while last fall. I was even losing weight, but then several things happened and I haven't been able to make myself get strictly back to it.
Like you, I have my "favorite thing" that I don't want to give up. Mine is dairy (mainly cheese & sour cream).
Anyway, I think you have done wonderfully giving up gluten (I know you really didn't have a choice.....but still.....you did it). I'm sure you'll be able to handle whatever is ahead. However, I agree, you will need some grieving time.
I guess I'm assuming you have MC and I shouldn't do that. At least you will know soon what the verdict is for that.
Good Luck
Love, Shirley
I can't really say what intolerances I have because I've always been on meds. I can say that I do better if I don't eat a lot of gluten so I'm 95% sure I'm gluten intolerant. Other than that, I have no idea. I have been tempted several time to do Dr. Fine's tests but haven't yet because I don't know if I have enough will power go off the meds and stick faithfully to the diet. I was doing great on the Paleo (hunter/gatherer) diet for a while last fall. I was even losing weight, but then several things happened and I haven't been able to make myself get strictly back to it.
Like you, I have my "favorite thing" that I don't want to give up. Mine is dairy (mainly cheese & sour cream).
Anyway, I think you have done wonderfully giving up gluten (I know you really didn't have a choice.....but still.....you did it). I'm sure you'll be able to handle whatever is ahead. However, I agree, you will need some grieving time.
I guess I'm assuming you have MC and I shouldn't do that. At least you will know soon what the verdict is for that.
Good Luck
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
-
Liz
- Rockhopper Penguin
- Posts: 1540
- Joined: Tue Sep 13, 2005 5:23 pm
- Location: Qld Australia
- Contact:
Hi Laura. Maybe you should ask what food intolerances don't we have. I personally seem to be developing more intolerances all the time. Have had to cut out olives, which I love, corn, shredded coconut, dried peas, think fresh peas are going that way too, pork crackling (awwww) & now am having problems with all sorts of leafy green vegs such as lettuce, cabbage etc. Too much dairy also upsets me. Can tolerate a little
Love
Liz
Love
Liz
A smile is a light in the window of your face that shows that your heart is at home
Hi Laura,
From what I can tell, as with all autoimmune diseases there is a huge range in symptoms and intolerences. I was just diagnosed so I've eliminated all my known intolerences (from Dr. Fine's test) and then all grains ...and eating mainly meat well cooked veggies and bananas. From what these great people have shared with me....I think that once my colon has healed, I'll be able to introduce a lot more food and then I'll be able to figure out what else doesn't work for me.
Another part of the MC disease is an imbalance of the gut flora. So I'm looking into probiotics....another thing that works for some here....but not all.
Laura, you've already gotten the gf diet nailed so you have already done the hardest part...you will definitely be able to handle this. My husband has been wonderful through all of this too...I would have had a hard time without his support. He's been teasing me lately calling me bubble girl! It feels that way sometimes.
I don't think MC is very common at all. The rest of the questions are for the other experienced people here...I'm still finding my way....with a lot of help here.
Take care.
Love
Cristi
From what I can tell, as with all autoimmune diseases there is a huge range in symptoms and intolerences. I was just diagnosed so I've eliminated all my known intolerences (from Dr. Fine's test) and then all grains ...and eating mainly meat well cooked veggies and bananas. From what these great people have shared with me....I think that once my colon has healed, I'll be able to introduce a lot more food and then I'll be able to figure out what else doesn't work for me.
Another part of the MC disease is an imbalance of the gut flora. So I'm looking into probiotics....another thing that works for some here....but not all.
Laura, you've already gotten the gf diet nailed so you have already done the hardest part...you will definitely be able to handle this. My husband has been wonderful through all of this too...I would have had a hard time without his support. He's been teasing me lately calling me bubble girl! It feels that way sometimes.
I don't think MC is very common at all. The rest of the questions are for the other experienced people here...I'm still finding my way....with a lot of help here.
Take care.
Love
Cristi
Laura,
MC is considered a rare orphan disease. This 1999 study in Spain shows CC being 1.1% and LC 3.1% per 100,000 inhabitants.
Here is a link to the abstract:
http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract
Celia
MC is considered a rare orphan disease. This 1999 study in Spain shows CC being 1.1% and LC 3.1% per 100,000 inhabitants.
Here is a link to the abstract:
http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract
Celia
I beleive in magic!