Lymphocytic Colitis and Interstitial Cystitis
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lymphocytic Colitis and Interstitial Cystitis
Does anyone in this group have both microscopic colitis and interstitial cystitis. I was just diagnosed with lymphocytic colitis and have interstitial cystitis for a very long time.
Hi Bunny,
Welcome to the board. I don't recall that anyone has posted about that combination, but that doesn't mean that someone here might not have it and just hasn't mentioned it. I can see how the two issues might be related. Among all the many members, we seem to have all sorts of combinations of diseases, so maybe someone will respond.
I hope you can find your answers here.
Tex
Welcome to the board. I don't recall that anyone has posted about that combination, but that doesn't mean that someone here might not have it and just hasn't mentioned it. I can see how the two issues might be related. Among all the many members, we seem to have all sorts of combinations of diseases, so maybe someone will respond.
I hope you can find your answers here.
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.
I did know someone in college who had IC, who later turned out also to have Celiac Disease... so there might be a gluten connection. It was a loong time ago - but if that connection exists, I would imagine it has been clarified since then, and you might find some connections along those lines in the IC or celiac communities.
My hunch is that the help you'll find here will also help the IC - and welcome.
All my best,
Sara
My hunch is that the help you'll find here will also help the IC - and welcome.
All my best,
Sara
Bunny,
By the way, have you tried D-mannose for the IC? I don't know about IC, but D-mannose definitely works for UTIs, and some members have found that it helps their MC. At any rate, it can't hurt, since it's an indigestible sugar.
http://www.perskyfarms.com/phpBB2/viewt ... t=dmannose
Tex
By the way, have you tried D-mannose for the IC? I don't know about IC, but D-mannose definitely works for UTIs, and some members have found that it helps their MC. At any rate, it can't hurt, since it's an indigestible sugar.
http://www.perskyfarms.com/phpBB2/viewt ... t=dmannose
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.
Thank you for all your help. The IC is very much under control since I have had it for so long, but the new disease has me baffled and trying to figure out what foods I can and can't eat. It took many years to figure out the IC diet. I hope it doesn't take me that long to figure out this one. I am slowly weaning myself off of the Entocort because I have
problems with veins in one leg and must have it taken care of, but cannot do it while on a corticosteroid.
Bunny
problems with veins in one leg and must have it taken care of, but cannot do it while on a corticosteroid.
Bunny
WELCOME, BUNNY!! 
I'm sorry that you are having to deal with two conditions, although it sounds like you have the IC under control.
The length of time to determine your diet for MC depends upon a few factors: how many food sensitivities you have, which seems to be determined by your genetic makeup. Your success also depends upon how strict you are about following the diet.
Many of us have had the stool testing done by Enterolab. The testing is highly reliable and will reveal whether you are intolerant to some of the most common food triggers. Most of us need to eliminate gluten. The next most prevalent intolerance is casein (dairy) and a few more need to eliminate soy. You may be one of the lucky ones who only needs to eliminate gluten.
I'm sure you are reading as much as you can on the board. There is a wealth of information here - we have years of experience dealing with MC. Please feel free to ask questions. We are here to help you.
Gloria
I'm sorry that you are having to deal with two conditions, although it sounds like you have the IC under control.
The length of time to determine your diet for MC depends upon a few factors: how many food sensitivities you have, which seems to be determined by your genetic makeup. Your success also depends upon how strict you are about following the diet.
Many of us have had the stool testing done by Enterolab. The testing is highly reliable and will reveal whether you are intolerant to some of the most common food triggers. Most of us need to eliminate gluten. The next most prevalent intolerance is casein (dairy) and a few more need to eliminate soy. You may be one of the lucky ones who only needs to eliminate gluten.
I'm sure you are reading as much as you can on the board. There is a wealth of information here - we have years of experience dealing with MC. Please feel free to ask questions. We are here to help you.
Gloria
You never know what you can do until you have to do it.
I found this bladder info on my internet travels
"The Better Bladder Book”
December 20, 2010 · Filed Under "Gluten Toxicity", Celiac Nurse's Book · Comment
I am so impressed by this book about chronic pelvic pain and interstitial cystitis. In fact, I included it in my book, “Gluten Toxicity” as a resource. It has been written by a registered nurse (RN) who knows how to advocate for her patients and who regularly thinks outside of the box. The author, Wendy Cohan, is a RN from Portland, Oregon, (US). She counsels patients with celiac disease, dermatitis herpetiformis, non-celiac gluten intolerance, and bladder related conditions. Wendy is also the author of Gluten-Free Portland, A Resource Guide” and maintains 3 websites at www.mywellbladder.com www.glutenfreechoice.com
and www.thebetterbladderbookinfo.com I have had the pleasure of conversing with Wendy by e-mail and can say that she appears to be a very professional, approachable and knowledgeable RN with a passion for helping patients who are suffering."
I think I am going to buy the "Gluten Toxicity" book I looked at some of it on Amazon by using the "look inside" feature and putting key words in the search box.
December 20, 2010 · Filed Under "Gluten Toxicity", Celiac Nurse's Book · Comment
I am so impressed by this book about chronic pelvic pain and interstitial cystitis. In fact, I included it in my book, “Gluten Toxicity” as a resource. It has been written by a registered nurse (RN) who knows how to advocate for her patients and who regularly thinks outside of the box. The author, Wendy Cohan, is a RN from Portland, Oregon, (US). She counsels patients with celiac disease, dermatitis herpetiformis, non-celiac gluten intolerance, and bladder related conditions. Wendy is also the author of Gluten-Free Portland, A Resource Guide” and maintains 3 websites at www.mywellbladder.com www.glutenfreechoice.com
and www.thebetterbladderbookinfo.com I have had the pleasure of conversing with Wendy by e-mail and can say that she appears to be a very professional, approachable and knowledgeable RN with a passion for helping patients who are suffering."
I think I am going to buy the "Gluten Toxicity" book I looked at some of it on Amazon by using the "look inside" feature and putting key words in the search box.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Bunny,
I have a form of pelvic pain that is akin to IC. In fact, the IC is flaring right now. What would you like to know? I have been through the treatment wringer. Now I am also male but according to Stanford University, IC and male pelvic pain share many causes and symptoms. I feel for you!
Rich
I have a form of pelvic pain that is akin to IC. In fact, the IC is flaring right now. What would you like to know? I have been through the treatment wringer. Now I am also male but according to Stanford University, IC and male pelvic pain share many causes and symptoms. I feel for you!
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Timely subject for me. It seems I may be looking at a diagnosis of IC, although it's yet to be determined for sure.
I have no history of bladder issues but noticed in the last few months I started feeling like I was getting a UTI on several occasions. However, the next day I always felt better so I didn't think too much about it. This past week I started having what I suspected were bladder spasms. Honestly, it was like contractions...powerful short bursts of severe pain and then no pain. This went on for hours. Woke up the next day, no more spasms. But, I then started with severe pelvic pain, pressure to urinate and terrible skin irritation seemingly from the urine. Nothing relieved the pelvic pain, not AZO or ibuprofen. Went to the doctor today and the quick strip test indicated no infection, but we'll wait to see what the lab says. He brought up the possibility of IC.
Honestly, I'm not expecting an infection because of the way my symptoms come and go over a period of weeks and with varying degrees of severity. I don't think an infection would present in this way. Plus, I've never had skin irritation from a UTI. That was painful!
Interestingly, in reading I find that mast cells are the culprit for IC! (For those that don't know, my GI problems stem from too many mast cells in my gut, known as "mastocytic enterocolitis".) Could it be that I have yet one more area where my mast cells are running amuck? Seems likely to me, although I'll wait on passing judgment until my lab tests are back. However, suffice it to say that I'm very suspicious this will turn out to be a part of the larger mast cell issues I'm dealing with at this time.
If this is something I'm going to be dealing with ongoing I will definitely be looking for guidance. These past few days have been just awful with the pelvic pain and associated issues. I tell you it's true...if it's not one thing it's another!
Julie
I have no history of bladder issues but noticed in the last few months I started feeling like I was getting a UTI on several occasions. However, the next day I always felt better so I didn't think too much about it. This past week I started having what I suspected were bladder spasms. Honestly, it was like contractions...powerful short bursts of severe pain and then no pain. This went on for hours. Woke up the next day, no more spasms. But, I then started with severe pelvic pain, pressure to urinate and terrible skin irritation seemingly from the urine. Nothing relieved the pelvic pain, not AZO or ibuprofen. Went to the doctor today and the quick strip test indicated no infection, but we'll wait to see what the lab says. He brought up the possibility of IC.
Honestly, I'm not expecting an infection because of the way my symptoms come and go over a period of weeks and with varying degrees of severity. I don't think an infection would present in this way. Plus, I've never had skin irritation from a UTI. That was painful!
Interestingly, in reading I find that mast cells are the culprit for IC! (For those that don't know, my GI problems stem from too many mast cells in my gut, known as "mastocytic enterocolitis".) Could it be that I have yet one more area where my mast cells are running amuck? Seems likely to me, although I'll wait on passing judgment until my lab tests are back. However, suffice it to say that I'm very suspicious this will turn out to be a part of the larger mast cell issues I'm dealing with at this time.
If this is something I'm going to be dealing with ongoing I will definitely be looking for guidance. These past few days have been just awful with the pelvic pain and associated issues. I tell you it's true...if it's not one thing it's another!
Julie
Julie,
From what I have read on the mast cell forum, IC is considered a mast cell disorder by some of the mast cell researchers. You might want to try a strict low histamine diet and see if it helps.
Mary Beth
From what I have read on the mast cell forum, IC is considered a mast cell disorder by some of the mast cell researchers. You might want to try a strict low histamine diet and see if it helps.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer