Sounds like you might have a gluten sensitivity as well based on your issues. As Tex mentioned, I had endometriosis. I had a complete hysterectomy 3 years ago due to fibroid causing extreme bleeding (read trip to the ER in an ambulance after passing out, blood transfusion and emergency D&C). Anyway, I was diagnosed with the endo about a year before the MC started. So needless to say, I'd been doing a lot of reading on the subject. I found it interesting that this group was finding through Dr. Fine's research (which was fairly new then) that there was the gluten connection, and much of the literature on endo suggests that some patients find relief from a wheat and dairy free diet. So I tried gluten free more as preventative medicine (I'd gotten my MC under control (at least no D) by eliminating ibuprofen as my pain reliever of choice). I was pleasantly surprised to find that in about 2 weeks, aches and pains that I blamed on age and the endo started to go away! I've never been tested for gluten sensitivity (other than a negative blood test for celiac) but through lots of trial and error am convinced I'm definately gluten intolerant.
You might want to try being gf with your daughter for at least a few weeks and see if you feel better. My skin gets very dry too when I eat gluten.
Gotta run and get the kids on the bus...first day of school.
Katy
My 2 Year Old was just diagnosed with LC :(
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
You guys are all awesome...I'm so glad I found this board. Tex, thank you for all the information. I have had digestive issues my entire life (which got completely better when I was pregnant and breast feeding, but are now coming back). I also have a 1 year old boy - I'm worried he has a gluten sensitivity as well. He has eczema. My daughter also has mild asthma. I have an endometriosis book about nutrition and it says that eczema, asthma, hay fever (which my husband has), psoriasis and digestive problems might be caused by a dairy intolerance. I will remove the dairy from her diet if the gluten only removal doesn't work. She was dairy free for 3 months, but that didn't help the D at all.
Sara, my daughter loves yogurt so maybe I'll have her try the DanActive (funny you mention that b/c my husband used to work for Dannon - we used to get free yogurt all the time, but not anymore). We are also heavy users of the Triple Paste...that stuff is great! For how much D she has, her diaper rash has been really good. She is starting to potty train and she can go #2 on command...so she has pretty good control even though it is always D.....NEVER solid. It used to be solid, but that changed about 5 months ago. All of a sudden it was just D all the time....no gradual change.
Katy, I'm sorry to hear about your problems and the hysterectomy. That must have been horrible. My endo has really been acting up lately....I finished nursing my son about 4 months ago and all the pain is coming back...and the digestive tract effects as well. I think I'm going to go wheat/gluten free as well. It is hard to eat that stuff in front of Camryn anyhow. She freaked out last night b/c she wanted Chick Fil A. She was hungry and didn't want the gf food anymore. I made her special gf chicken...but it was pretty gross.
Has anyone heard of Singulair causing LC? The reason I ask is b/c Camryn was on Singulair when this started. She was only on it for 1 week and we stopped it b/c we thought that was the cause of the D. But then it never went away....even after stopping the meds. She was on Augmentin not long before that for possible Whooping Cough...so we thought it might have been C Diff. We were really upset to learn the C Diff test was negative....twice.
Thanks,
Camryn's Mommy
Sara, my daughter loves yogurt so maybe I'll have her try the DanActive (funny you mention that b/c my husband used to work for Dannon - we used to get free yogurt all the time, but not anymore). We are also heavy users of the Triple Paste...that stuff is great! For how much D she has, her diaper rash has been really good. She is starting to potty train and she can go #2 on command...so she has pretty good control even though it is always D.....NEVER solid. It used to be solid, but that changed about 5 months ago. All of a sudden it was just D all the time....no gradual change.
Katy, I'm sorry to hear about your problems and the hysterectomy. That must have been horrible. My endo has really been acting up lately....I finished nursing my son about 4 months ago and all the pain is coming back...and the digestive tract effects as well. I think I'm going to go wheat/gluten free as well. It is hard to eat that stuff in front of Camryn anyhow. She freaked out last night b/c she wanted Chick Fil A. She was hungry and didn't want the gf food anymore. I made her special gf chicken...but it was pretty gross.
Has anyone heard of Singulair causing LC? The reason I ask is b/c Camryn was on Singulair when this started. She was only on it for 1 week and we stopped it b/c we thought that was the cause of the D. But then it never went away....even after stopping the meds. She was on Augmentin not long before that for possible Whooping Cough...so we thought it might have been C Diff. We were really upset to learn the C Diff test was negative....twice.
Thanks,
Camryn's Mommy
Mommy to Camryn - 8 years old - dx'd with LC 8/08
Hormones apparently have a significant affect on MC, because during pregnancy and breastfeeding, the symptoms virtually always improve greatly, or disappear altogether. Progesterone, for example, tends to relax muscle tissue, which in turn slows down motility, and thereby causes a reduction in D. As the hormone production begins to wind down, then the symptoms begin to return. Presumably, if the main problem were C, rather than D, then the symptoms could be worsened, because progesterone tends to cause C. Since D is by far the most common symptom of MC, pregnancy and breastfeeding typically bring a welcome break from the usual routine with symptoms. The effects on IBS patients seem to be more erratic, with a lower percentage of women reporting an improvement in symptoms, and more reporting worsened symptoms during pregnancy, but maybe this is due to the fact that C is so often reported as a problem for IBS sufferers.
Gluten and dairy intolerances seem to go together almost like two peas in a pod, and soy is usually not very far behind them, statistically. Hopefully, the removal of gluten and dairy from her diet will do the trick, but if it doesn't, please try removing soy, (in combination with removing gluten and dairy, of course), because many of us here are also soy intolerant.
For some quick and easy ways to turn unappetizing GF meals into gourmet delights, (no kidding), try some of the recipes in Dee's Ketchen:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Many of these recipes taste better than conventional recipes, even though they are GF, DF, etc. Be sure to note the ingredients carefully, since some of the recipes eliminate more intolerances than others, and in many cases, alternative options are listed, in order to accommodate as many "customized" diets as possible.
Singulair is a relatively new product, isn't it. It may not have been on the market long enough for postings about any connection with MC to be showing up in any significant numbers this soon, especially since MC is still considered by most doctors to be a "rare" disease. I notice that "diarrhea" is listed as a possible side effect on the label, for children between two and five years of age.
As you are aware, Augmentin is a very, very risky antibiotic for anyone to take, in consideration of it's history of causing C. diff. False negative tests are very common, (almost the rule), with C. diff, and it sometimes takes several tests before a positive result will show up. If you should ever notice any blood in her stool, please ask her doctor to do another culture test, because MC does not cause blood in the stool, (though it sometimes causes significant hemorrhoid problems, when the D is severe, and these can bleed, or course). C. diff is becoming an increasingly troublesome problem, and some strains are becoming resistant to known antibiotics. A number of our members have had it, (some of their doctors insisted that their symptoms were just due to their MC, and those doctors had to be persuaded to retest for it), and obviously, if a patient has C. diff, nether the diet, nor any of the meds available for treating it, will stop the D, until the C. diff is controlled, (and it almost always requires Vancomycin to eradicate it - the Flagyl that they initially prescribe, very rarely controls it).
Tex
Gluten and dairy intolerances seem to go together almost like two peas in a pod, and soy is usually not very far behind them, statistically. Hopefully, the removal of gluten and dairy from her diet will do the trick, but if it doesn't, please try removing soy, (in combination with removing gluten and dairy, of course), because many of us here are also soy intolerant.
For some quick and easy ways to turn unappetizing GF meals into gourmet delights, (no kidding), try some of the recipes in Dee's Ketchen:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Many of these recipes taste better than conventional recipes, even though they are GF, DF, etc. Be sure to note the ingredients carefully, since some of the recipes eliminate more intolerances than others, and in many cases, alternative options are listed, in order to accommodate as many "customized" diets as possible.
Singulair is a relatively new product, isn't it. It may not have been on the market long enough for postings about any connection with MC to be showing up in any significant numbers this soon, especially since MC is still considered by most doctors to be a "rare" disease. I notice that "diarrhea" is listed as a possible side effect on the label, for children between two and five years of age.
As you are aware, Augmentin is a very, very risky antibiotic for anyone to take, in consideration of it's history of causing C. diff. False negative tests are very common, (almost the rule), with C. diff, and it sometimes takes several tests before a positive result will show up. If you should ever notice any blood in her stool, please ask her doctor to do another culture test, because MC does not cause blood in the stool, (though it sometimes causes significant hemorrhoid problems, when the D is severe, and these can bleed, or course). C. diff is becoming an increasingly troublesome problem, and some strains are becoming resistant to known antibiotics. A number of our members have had it, (some of their doctors insisted that their symptoms were just due to their MC, and those doctors had to be persuaded to retest for it), and obviously, if a patient has C. diff, nether the diet, nor any of the meds available for treating it, will stop the D, until the C. diff is controlled, (and it almost always requires Vancomycin to eradicate it - the Flagyl that they initially prescribe, very rarely controls it).
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.
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Sara East
- Little Blue Penguin
- Posts: 36
- Joined: Thu Jun 12, 2008 12:16 pm
- Location: New Hampshire
- Contact:
It's funny you mentioned that about the hormones making MC better, I happen to be one of those rare women who had no relief during all 3 of my pregnancies. The onset of MC was about 7 months along in my first pregnancy about the time I went into premature labor...kind of a coincidence huh? Through out my other 2 pregnancies my MC was so bad I had to stay on my meds (Bentyl and something else I don't remember) and my last child ended up on a ventilator in the NICU. The doc's aren't certain if my meds caused it but it made me feel like a pretty crappy mom. I was keeping my fingers crossed that I might have the typical constipation side effects each pregnancy, even taking huge amounts of iron for anemia never gave me C. Try using the potty every hour while 50lbs overweight and 9 months pregnant...I'm not going into detail about how hard it is to reach certain areas while that pregnant but those of you who have kids will understand lol :)
Hi Camryn's Mom and 
I am a pediatrician (with LC) and can attest to the fact that the diagnosis is rare in kiddies. However, that may be partly because we haven't looked for it enough. If the doc doing colonoscopy is only looking for the major inflammatory bowel diseases (IBDs) like Crohn's or ulcerative colitis, which can be seen with the naked eye, they often do not do biopsies (the only way to diagnose MC). You have already received lots of good info, so I'll just make a few points.
One of the predisposing risk factors for getting MC is the use of antibiotics. I am relieved to know that your little girl did not have C. diff., but the antibiotic use (Augmentin) could have precipitated the colitis. I believe antibiotics did this to me. The antibiotics destroy the "good" bacteria in the colon, allowing the "bad" bacteria to overgrow, leading to the inflammation we know as colitis.
Also, in many people, once colitis is initiated, a gene becomes altered so that the body begins making antibodies to gluten. The majority of folks with MC also have an associated gluten intolerance (which usually does not show up on the standard celiac blood tests.........this is why we are always singing the praises of Dr. Fine's more sensitive STOOL tests).
Regarding the repeat colonoscopy, unless the docs have a stronger reason, I would probably pass. But, of course, I haven't examined your daughter, nor have I seen her medical records and test results. I share your concern about GA. The best advice I have for you is to go with whatever your own inner voice is telling you!
I would recommend Dr. Fine's full panel if money is no object. The gene test might be helpful for your daughter - and son, too. It's easy - just a swab of the inner cheek.
Is it possible your son could have D.H. (dermatitis herpetiformis)? This is an itchy skin rash that goes along with gluten sensitivity. Try googling it to see if the rash looks similar.
I know how frustrating this situation must be for you and your family, but I do believe you will be able to find the right answers to get Camryn back on the road to health. It does take a while to tweak the diet and find the offending foods, so don't become discouraged. It took me almost 9 months for the diarrhea to stop. However, I found out from Dr. Fine's test that I have "double DQ1"genes, a pattern often associated with multiple food intolerances (see my list under my photo to the left) and even neurological issues (which fortunately I don't seem to have, although I suspect my balance could be better).
Looking forward to further chats......
Love,
Polly
I am a pediatrician (with LC) and can attest to the fact that the diagnosis is rare in kiddies. However, that may be partly because we haven't looked for it enough. If the doc doing colonoscopy is only looking for the major inflammatory bowel diseases (IBDs) like Crohn's or ulcerative colitis, which can be seen with the naked eye, they often do not do biopsies (the only way to diagnose MC). You have already received lots of good info, so I'll just make a few points.
One of the predisposing risk factors for getting MC is the use of antibiotics. I am relieved to know that your little girl did not have C. diff., but the antibiotic use (Augmentin) could have precipitated the colitis. I believe antibiotics did this to me. The antibiotics destroy the "good" bacteria in the colon, allowing the "bad" bacteria to overgrow, leading to the inflammation we know as colitis.
Also, in many people, once colitis is initiated, a gene becomes altered so that the body begins making antibodies to gluten. The majority of folks with MC also have an associated gluten intolerance (which usually does not show up on the standard celiac blood tests.........this is why we are always singing the praises of Dr. Fine's more sensitive STOOL tests).
Regarding the repeat colonoscopy, unless the docs have a stronger reason, I would probably pass. But, of course, I haven't examined your daughter, nor have I seen her medical records and test results. I share your concern about GA. The best advice I have for you is to go with whatever your own inner voice is telling you!
I would recommend Dr. Fine's full panel if money is no object. The gene test might be helpful for your daughter - and son, too. It's easy - just a swab of the inner cheek.
Is it possible your son could have D.H. (dermatitis herpetiformis)? This is an itchy skin rash that goes along with gluten sensitivity. Try googling it to see if the rash looks similar.
I know how frustrating this situation must be for you and your family, but I do believe you will be able to find the right answers to get Camryn back on the road to health. It does take a while to tweak the diet and find the offending foods, so don't become discouraged. It took me almost 9 months for the diarrhea to stop. However, I found out from Dr. Fine's test that I have "double DQ1"genes, a pattern often associated with multiple food intolerances (see my list under my photo to the left) and even neurological issues (which fortunately I don't seem to have, although I suspect my balance could be better).
Looking forward to further chats......
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Can anyone tell me about their pain with LC? I'm trying to understand what Camryn is feeling. She doesn't seem to be in pain, but she is a very tough little girl. The kind that smashes her head on the coffee table and doesn't cry. The only time it seems like she is in pain is in the middle of the night. She'll cry and tell me her belly hurts. She doesn't seem to be in pain before she has D...but I don't know if she just isn't showing it.
We meet with the Dr. on Tuesday...is there anything specific I should ask? I'm going to tell her I have a lot of concerns about getting another colonoscopy and that we would rather skip it.
I'm so frustrated. We are doing the completely gluten free diet and I'm not seeing any changes. I know I'm being impatient...but I was hoping to see something :( I think I'm just going to take out the dairy and chocolate now to see if that helps.
Tex - I wonder if it was the Augmentin and the c-diff caused the MC. All I know is that this started happening within a month of taking the Augmentin and within days of taking the Singulair. I will try the gluten free recipes. My daughter loves Chicken Curry...so we made that the other night. I think the Cardamom in it helps her belly. Everyone thinks it is hysterical that she loves Indian food! Most 2 year olds aren't fans of ethnic foods.
Polly - Thanks for writing. It is nice to hear from a Dr. who actually believes that gluten intolerance is linked to this. I called my GI Dr. the other day he said it is definitely tied to Celiac Disease and that a gluten free diet might help....I was surprised. Hopefully when I meet with her Dr. on Tuesday I can convince her of that as well. I'm going to take as much info from the Internet that I can find. Does anyone recommend any specific articles? I know what will happen - she will prescribe a steroid...but I would rather not give my 2 year old a steroid.
Sara - Yay Triple Paste!
PS - I tried to add a picture of Camryn as my Avatar...but it didn't work. It was 60x60 and less than 6kb....any ideas?
We meet with the Dr. on Tuesday...is there anything specific I should ask? I'm going to tell her I have a lot of concerns about getting another colonoscopy and that we would rather skip it.
I'm so frustrated. We are doing the completely gluten free diet and I'm not seeing any changes. I know I'm being impatient...but I was hoping to see something :( I think I'm just going to take out the dairy and chocolate now to see if that helps.
Tex - I wonder if it was the Augmentin and the c-diff caused the MC. All I know is that this started happening within a month of taking the Augmentin and within days of taking the Singulair. I will try the gluten free recipes. My daughter loves Chicken Curry...so we made that the other night. I think the Cardamom in it helps her belly. Everyone thinks it is hysterical that she loves Indian food! Most 2 year olds aren't fans of ethnic foods.
Polly - Thanks for writing. It is nice to hear from a Dr. who actually believes that gluten intolerance is linked to this. I called my GI Dr. the other day he said it is definitely tied to Celiac Disease and that a gluten free diet might help....I was surprised. Hopefully when I meet with her Dr. on Tuesday I can convince her of that as well. I'm going to take as much info from the Internet that I can find. Does anyone recommend any specific articles? I know what will happen - she will prescribe a steroid...but I would rather not give my 2 year old a steroid.
Sara - Yay Triple Paste!
PS - I tried to add a picture of Camryn as my Avatar...but it didn't work. It was 60x60 and less than 6kb....any ideas?
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jillian357
- Adélie Penguin
- Posts: 112
- Joined: Sun May 04, 2008 2:23 pm
- Location: Ohio
- Contact:
Hi Camryn's Mommy,
Welcome to the board, although I'm so sorry to hear the reason why you had to seek us out.
I just wanted to chime in and let you know that I have taken Singulair since Oct. of last year....before my MC diagnosis (April of this year). Not sure if that helps, but there was quite a time span from the time I started taking it until the MC problems started for me.
I still take it for my asthma, and I seem to be getting much better as far as the MC is concerned by dietary changes and medication. I can't connect the Singulair to my MC in any way for sure.....
I hope Camryn feels better soon! Those stomach cramps can be miserable. For me, it's just a twisting cramping feeling that can suddenly strike and stop me dead in my tracks. It's not always followed by diarrhea for me either, sometimes it's just horrible cramps.
No fun for anyone, especially a toddler!
Keep us posted on how she's doing......and again, welcome!
~Jill
Welcome to the board, although I'm so sorry to hear the reason why you had to seek us out.
I just wanted to chime in and let you know that I have taken Singulair since Oct. of last year....before my MC diagnosis (April of this year). Not sure if that helps, but there was quite a time span from the time I started taking it until the MC problems started for me.
I still take it for my asthma, and I seem to be getting much better as far as the MC is concerned by dietary changes and medication. I can't connect the Singulair to my MC in any way for sure.....
I hope Camryn feels better soon! Those stomach cramps can be miserable. For me, it's just a twisting cramping feeling that can suddenly strike and stop me dead in my tracks. It's not always followed by diarrhea for me either, sometimes it's just horrible cramps.
No fun for anyone, especially a toddler!
Keep us posted on how she's doing......and again, welcome!
~Jill
Pain is another issue where we are different. Some of us do not experience significant pain from the MC, while others experience intense pain. For myself, the worst pain seemed to be from the bloating - sometimes I really wondered if my gut would actually burst from the pressure. It kept me awake many a night. Like Jill, my cramps were sometimes pretty rough too, but they seemed to hold at a low to moderate level most of the time, with occasional waves of pain that would sometimes cause me to double over and grit my teeth. Once in a while, they would almost bring me to my knees, but usually the intense pain would only last for a few seconds, (fortunately).
Does her gut occasionally make loud gurgling noises? That seems to be common with IBDs, during reactions, but for me, at least, it wasn't usually associated with pain.
As Polly mentioned, it's certainly possible that the Augmentin could have set up the right conditions for the development of MC. I also agree with Polly that antibiotics are way over-prescribed by many doctors, and this can cause serious problems for those of us who are unlucky enough to be in a vulnerable position, for one reason or another. I would suspect that this is especially true for young people, because even though the body of a child can produce antibodies at about six months of age, the immune system is not fully developed until about the age of 14, (though some "authorities" claim that development is complete at about 4 or 5 years of age). Obviously, with such a wide range of "estimates", we still have a lot to learn about immune system development and modification.
For that reason, I'm in full agreement with you that one should be very, very careful about the use of corticosteroids for young children. I'm not sure that any research has ever been done to document what the long-term implications might be for suppressing the immune system of very young children. How can the immune system develop normally, when it is being suppressed by a drug? That has to have an adverse effect.
Dr. Scot Lewey, (whom Polly occasionally corresponds with), has some excellent information in his blogs, and he's a dedicated researcher on issues of this type:
http://thefooddoc.blogspot.com/
You might also be interested in this one:
http://ezinearticles.com/?Irritable-Bow ... &id=455365
and this one:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4352
I changed the permissions on that folder, (they might have gotten changed when this board was recently moved to another server). If it still doesn't work for you, just e-mail me the avatar, (or a photo), and I'll be happy to upload it.
Tex
Does her gut occasionally make loud gurgling noises? That seems to be common with IBDs, during reactions, but for me, at least, it wasn't usually associated with pain.
As Polly mentioned, it's certainly possible that the Augmentin could have set up the right conditions for the development of MC. I also agree with Polly that antibiotics are way over-prescribed by many doctors, and this can cause serious problems for those of us who are unlucky enough to be in a vulnerable position, for one reason or another. I would suspect that this is especially true for young people, because even though the body of a child can produce antibodies at about six months of age, the immune system is not fully developed until about the age of 14, (though some "authorities" claim that development is complete at about 4 or 5 years of age). Obviously, with such a wide range of "estimates", we still have a lot to learn about immune system development and modification.
For that reason, I'm in full agreement with you that one should be very, very careful about the use of corticosteroids for young children. I'm not sure that any research has ever been done to document what the long-term implications might be for suppressing the immune system of very young children. How can the immune system develop normally, when it is being suppressed by a drug? That has to have an adverse effect.
Dr. Scot Lewey, (whom Polly occasionally corresponds with), has some excellent information in his blogs, and he's a dedicated researcher on issues of this type:
http://thefooddoc.blogspot.com/
You might also be interested in this one:
http://ezinearticles.com/?Irritable-Bow ... &id=455365
and this one:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4352
I changed the permissions on that folder, (they might have gotten changed when this board was recently moved to another server). If it still doesn't work for you, just e-mail me the avatar, (or a photo), and I'll be happy to upload it.
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.
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Yes, sometimes I hear the gurgling noises from her belly.
Today was the worst day of this whole adventure so far :( She had D and it was so bad that it just exploded out of her diaper and brown water was all down her legs. It got in her shoes, all over the carpet, it even splashed on the walls. Sorry for the graphic description....but I just wanted to cry. She has the saddest little look on her face, then she says "Im sorry Mommy". It just breaks my heart. She kept saying over and over that she was sorry. Later in the day the D was back and she got the worse diaper rash i've ever seen (and I was without my triple paste!!!). It was a bad day and she hasn't been eating much lately. Her transit time was only 3 or 4 hours today. She ate some grapes around 2 or 3pm and it was out by 6pm. That is really bad, right? That means she isn't absorbing it.
Question for everyone: Has anyone ever tried Castor Oil? My husband asked me to ask you guys. He had to take it once and wanted to know if it would help her. I'm thinking that it would probably irritate the colon more, but you are the experts! :)
Thanks,
Camryn's Mommy
Today was the worst day of this whole adventure so far :( She had D and it was so bad that it just exploded out of her diaper and brown water was all down her legs. It got in her shoes, all over the carpet, it even splashed on the walls. Sorry for the graphic description....but I just wanted to cry. She has the saddest little look on her face, then she says "Im sorry Mommy". It just breaks my heart. She kept saying over and over that she was sorry. Later in the day the D was back and she got the worse diaper rash i've ever seen (and I was without my triple paste!!!). It was a bad day and she hasn't been eating much lately. Her transit time was only 3 or 4 hours today. She ate some grapes around 2 or 3pm and it was out by 6pm. That is really bad, right? That means she isn't absorbing it.
Question for everyone: Has anyone ever tried Castor Oil? My husband asked me to ask you guys. He had to take it once and wanted to know if it would help her. I'm thinking that it would probably irritate the colon more, but you are the experts! :)
Thanks,
Camryn's Mommy
Mommy to Camryn - 8 years old - dx'd with LC 8/08
My heart goes out to you. I have a 2 1/2 year-old granddaughter and I can't imagine such a small child having to deal with this disease. I can just hear Camryn apologizing for doing something she can't control.
I can't answer your question about Castor oil; hopefully someone else will be able to.
This is just a suggestion: perhaps you could try giving her a low fiber diet for now. It may be that she can't handle fiber while her gut is inflamed. Foods like applesauce, rice cereal, ground beef, etc.
As others have mentioned, I would stay away from the Big Three: gluten, dairy and soy. Soy is everywhere - even in vitamin supplements. You really have to read labels and take nothing for granted.
Keep posting your questions and problems here. There are many people who can help you.
Gloria
I can't answer your question about Castor oil; hopefully someone else will be able to.
This is just a suggestion: perhaps you could try giving her a low fiber diet for now. It may be that she can't handle fiber while her gut is inflamed. Foods like applesauce, rice cereal, ground beef, etc.
As others have mentioned, I would stay away from the Big Three: gluten, dairy and soy. Soy is everywhere - even in vitamin supplements. You really have to read labels and take nothing for granted.
Keep posting your questions and problems here. There are many people who can help you.
Gloria
You never know what you can do until you have to do it.
Hi Camryn's Mommy,
Don't worry about the graphic description. Most of us have been there, and we've had the same experience, as we raced toward the bathroom, and discovered that we were about two seconds too late, so we know exactly how she feels. That's very typical of MC. Please try to reassure her that it's not her fault, the same thing has happened to most of us, during reactions. Trust me, it's an extremely humbling experience.
Grapes give me diarrhea, even now, even though I've been in remission for over four years. Before I developed the disease, they never bothered me. I agree with Gloria, fiber irritates an already-inflamed gut, and minimizing the amount of fiber in the diet will help reduce the irritation. Besides, fiber has no nutritional value, and it's only benefit is to minimize the risk of constipation, so there is no reason to include it in her diet at this point, since it will delay healing at best, and cause additional inflammation, at worst. The skin on grapes, (and most other fruit), is probably one of the most irritating forms of fiber that we might ingest. I'm not a big fan of fruit of any type, during a reaction, but if you absolutely feel that you must give her some fruit, be sure that it is pureed, or at the very least, well cooked, and without any of the skin.
You are quite correct about the castor oil - please don't give her any. That's an old home remedy for various things, but the castor bean is toxic, (the deadly gas ricin, is made from the lectins in castor beans). Castor oil is probably capable of causing MC in some previously-healthy people. Here's why, if you want to read a technical article describing a research project that demonstrates that effect:
http://grande.nal.usda.gov/ibids/index. ... row=623184
That project involved equines, (horses), but I have no doubt that it would apply just as well to humans. If you don't understand some of the terms used in that article, I can provide a translation, if you want. Note that the use of castor oil caused a shift of the normal fauna in the colon toward a population dominated by E. coli and Enterobacter/Klebsiella. This is exactly the state which some researchers have discovered to exist in the colons of many patients with MC, leading some authorities to speculate that MC may be caused by an overgrowth of E. coli or Klebsiella bacteria. So far, however, no one has been able to verify that suggestion.
I wish I knew how to tell you a way to convince her that she shouldn't feel guilty about such "accidents" - it's not her fault, it's the disease. It gives no warning at all, sometimes.
Another option for treating "monkey butt", (as Dee refers to the inflamed condition that sometimes develops after persistent D), is zinc oxide, if I recall correctly, (in case you run out of the triple paste). Some members have had pretty good luck with that, I believe.
A transit time of 3 or 4 hours is quite common for MC reactions. In fact, some of us have experienced transit times under an hour. Malabsorption is definitely a serious problem at those rates, so please be sure that she stays hydrated, and she may need something such as Pedialyte, to make sure that certain vital electrolyte levels don't get too low. IMO, I think it sucks that the manufacturer chooses to use those synthetic food dyes in a product designed to rehydrate kids, but hopefully they won't bother her.
I hope she feels a lot better by tomorrow.
Tex
Don't worry about the graphic description. Most of us have been there, and we've had the same experience, as we raced toward the bathroom, and discovered that we were about two seconds too late, so we know exactly how she feels. That's very typical of MC. Please try to reassure her that it's not her fault, the same thing has happened to most of us, during reactions. Trust me, it's an extremely humbling experience.
Grapes give me diarrhea, even now, even though I've been in remission for over four years. Before I developed the disease, they never bothered me. I agree with Gloria, fiber irritates an already-inflamed gut, and minimizing the amount of fiber in the diet will help reduce the irritation. Besides, fiber has no nutritional value, and it's only benefit is to minimize the risk of constipation, so there is no reason to include it in her diet at this point, since it will delay healing at best, and cause additional inflammation, at worst. The skin on grapes, (and most other fruit), is probably one of the most irritating forms of fiber that we might ingest. I'm not a big fan of fruit of any type, during a reaction, but if you absolutely feel that you must give her some fruit, be sure that it is pureed, or at the very least, well cooked, and without any of the skin.
You are quite correct about the castor oil - please don't give her any. That's an old home remedy for various things, but the castor bean is toxic, (the deadly gas ricin, is made from the lectins in castor beans). Castor oil is probably capable of causing MC in some previously-healthy people. Here's why, if you want to read a technical article describing a research project that demonstrates that effect:
http://grande.nal.usda.gov/ibids/index. ... row=623184
That project involved equines, (horses), but I have no doubt that it would apply just as well to humans. If you don't understand some of the terms used in that article, I can provide a translation, if you want. Note that the use of castor oil caused a shift of the normal fauna in the colon toward a population dominated by E. coli and Enterobacter/Klebsiella. This is exactly the state which some researchers have discovered to exist in the colons of many patients with MC, leading some authorities to speculate that MC may be caused by an overgrowth of E. coli or Klebsiella bacteria. So far, however, no one has been able to verify that suggestion.
I wish I knew how to tell you a way to convince her that she shouldn't feel guilty about such "accidents" - it's not her fault, it's the disease. It gives no warning at all, sometimes.
Another option for treating "monkey butt", (as Dee refers to the inflamed condition that sometimes develops after persistent D), is zinc oxide, if I recall correctly, (in case you run out of the triple paste). Some members have had pretty good luck with that, I believe.
A transit time of 3 or 4 hours is quite common for MC reactions. In fact, some of us have experienced transit times under an hour. Malabsorption is definitely a serious problem at those rates, so please be sure that she stays hydrated, and she may need something such as Pedialyte, to make sure that certain vital electrolyte levels don't get too low. IMO, I think it sucks that the manufacturer chooses to use those synthetic food dyes in a product designed to rehydrate kids, but hopefully they won't bother her.
I hope she feels a lot better by tomorrow.
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, Gloria, for letting me know about soy in vitamins. I hadn't thought of that.
Camryn is really a cutie. I'm so sorry she has to go through all this at her very young age. I can barely handle it myself right now. I was doing so well with diet alone.
Camryn is really a cutie. I'm so sorry she has to go through all this at her very young age. I can barely handle it myself right now. I was doing so well with diet alone.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Thanks - I definitely won't give her the castor oil. I have determined that orange juice and grapes are definitely out. I believe chocolate causes bad D too...so I am now eliminating that as well. I will probably get rid of all dairy within the next few days (again). The problem with soy is that she drinks soy milk b/c she was previously taken off dairy. She is still really young and is supposed to be drinking milk...which has been replaced my soymilk, which she loves. She can't drink juice b/c it gives her D and she doesn't like plain water. I don't know what else she would drink.
I'm really worried about the malabsorption....she has not grown in 6 months (height, weight, even shoe size). All I can get her to eat now is Chicken Curry (her favorite - gf), Waffles (gf), Peanut Butter Puffs (gf), corn and gf pizza (but it has cheese on it, so that will have to stop).
Another thought - I realized today that when I put Camryn's waffle in the toaster oven that I had just put her brother's gluten containing waffle in right before hers. I'm guessing I need to have a separate "gluten-free" toaster oven just for her - right?
I meet with the Dr. tomorrow - hopefully she will give some good advice and take the gf thing seriously.
I'm really worried about the malabsorption....she has not grown in 6 months (height, weight, even shoe size). All I can get her to eat now is Chicken Curry (her favorite - gf), Waffles (gf), Peanut Butter Puffs (gf), corn and gf pizza (but it has cheese on it, so that will have to stop).
Another thought - I realized today that when I put Camryn's waffle in the toaster oven that I had just put her brother's gluten containing waffle in right before hers. I'm guessing I need to have a separate "gluten-free" toaster oven just for her - right?
I meet with the Dr. tomorrow - hopefully she will give some good advice and take the gf thing seriously.
Mommy to Camryn - 8 years old - dx'd with LC 8/08