LC - newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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JeffGordon100602
- Posts: 3
- Joined: Wed Oct 29, 2014 6:47 am
LC - newbie
I actually joined the site, because my daughter (just turned 12 years old) was recently diagnosed with Lymphocytic Colitis and acid reflux - both found on biopsies. I"m looking for any support / suggestions I can get... She is very small for her age (height and weight - average size of 8-10 year old), and not developing very quickly. She is going to a pediatric GI Specialist. Her doctor says this is not a kids disease and seems very confident symptoms should disappear with treatment. So far, we have tried Prilosec for the reflux - hoping it might take care of both issues. Didn't see any results, so she is now on Prednisolone also. Started w/10 mg dosage for 14 days and noticed improvement - which continued when we went down to the 8.3 mg dosage for 14 days. But when we went to the 6.5 mg, her symptoms came back with a vengeance (bloating, stomach cramps, not eating and diarrhea - missing school). Doc suggested going back to 8.3 dosage and we saw improvements again within 2 days - saw normal stool on day 4. We are now on day 7 and she hasn't had a bowel movement since day 4. I've been reading on probiotics and researching acidophilus for children. Is it okay to take this along w/the Prednisolone? Any advise??? Also, does anyone know if this increases her risk of getting UC or Krohns? We've had both in our family history (my aunt and uncle - her great aunt and uncle)...
Hi Jeff,
I'm sorry that your daughter has developed the disease that brought you here, but welcome to our Internet family. Your doctor is wrong. While the diagnostic rate for kids is rather low, that's mostly because GI specialists think that it is rare in kids, so they don't look for it. And if you don't look for LC, you won't find it, because the only way that it can be diagnosed is by examining biopsies of the colon under a microscope, to look for the markers of LC.
Our youngest member here was only 2-1/2 years old when her mother brought her here. By doing what the rest of us here do, her mother changed her diet (to cut out all gluten and dairy), and within a few weeks she was in remission. She is now a happy, healthy 8-year old, controlling her symptoms by diet alone (much to the chagrin of her medical team, who also wanted to treat her with prednisone). Here's a link to her original post from 2008, if you are interested:
My 2 Year Old was just diagnosed with LC :(
Contrary to what some doctors believe (assume), LC does not significantly increase our chances of developing either Crohn's disease or UC. But we are not immune to developing either of them, either. We basically have the same risk as anyone in the general population. We occasionally see someone who has both LC and UC, or LC and Crohn's, but those are definitely not common combinations, especially if we address the root cause of the perpetuation of the inflammation that causes these diseases, namely specific food sensitivities.
Virtually all of us here are sensitive to gluten, despite the fact that most of us test negative to the classic celiac screening blood tests. Those tests are so insensitive that they can only detect fully-developed celiac disease, and they don't even catch all of those cases. Your daughter's small stature is a very strong indication that she has celiac disease. Why most doctors are not capable of recognizing that symptom without even thinking about it is beyond me. They look but they don't see (if you know what I mean). If she hasn't been tested already, please ask her doctor to immediately test her for celiac disease. It's important, because as weak as those tests are, if she adopts a gluten-free diet to control her symptoms, within a few short weeks the tests will no longer be capable of detecting celiac disease, even if it is fully developed.
Her doctor apparently knows very little about treating LC. Please be aware that PPIs (such as Prilosec) are not only contraindicated with LC (because they can actually trigger the disease), but research shows that they cause the very symptoms that they are prescribed to treat. PPIs are a very iatrogenic drug, because after someone has taken them for a few weeks, it is almost impossible to wean off them. When a patient tries to stop taking them, they cause a rebound effect that causes worse symptoms than they had to begin with, because PPIs actually weaken the lower esophageal sphinctor, leading to increased leakage of stomach acid into the esophagus. The patient doesn't notice the pain from the reflux, because they lower the acidity of the stomach contents. But in addition to making the reflux worse, they also interfere with digestion (by lowering acidity), and this leads to even more problems with LC, since digestion is already a problem with LC. But no one who has LC should be taking a PPI, because they are a very common cause of LC. Shame on her doctor.
While we are still reacting, most of us react adversely to probiotics, so their use is counterproductive for most of us. The inflammation that causes LC is perpetuated by food sensitivities that are triggered when LC is triggered. Those foods cause the production of antibodies, leading to inflammation, and as long as the foods remain in our diet, the inflammation continues to be generated. Corticosteroids or other anti-inflammatory medications can sometimes mask the symptoms for a while, but as soon as the treatment is discontinued, the symptoms return, unless the sources of the inflammation are removed from the diet. Unfortunately, only a handful of GI specialists are aware of the diet connection, because somewhere along the line they have made the not only inappropriate, but just plain stupid assumption that diet has nothing to do with LC/CC/MC. The reality is, diet has everything to do with the proper treatment of this family of diseases. Claiming that diet has nothing to do with LC is like claiming that breathing polluted air has nothing to do with asthma or lung disease — it has everything to do with it.
One of our members here is a pediatrician, who has MC herself. She has been in remission by diet changes alone for over a dozen years now, so she can speak for the accuracy of my statements in this post. Again, welcome aboard, and please feel free to ask anything.
Tex
I'm sorry that your daughter has developed the disease that brought you here, but welcome to our Internet family. Your doctor is wrong. While the diagnostic rate for kids is rather low, that's mostly because GI specialists think that it is rare in kids, so they don't look for it. And if you don't look for LC, you won't find it, because the only way that it can be diagnosed is by examining biopsies of the colon under a microscope, to look for the markers of LC.
Our youngest member here was only 2-1/2 years old when her mother brought her here. By doing what the rest of us here do, her mother changed her diet (to cut out all gluten and dairy), and within a few weeks she was in remission. She is now a happy, healthy 8-year old, controlling her symptoms by diet alone (much to the chagrin of her medical team, who also wanted to treat her with prednisone). Here's a link to her original post from 2008, if you are interested:
My 2 Year Old was just diagnosed with LC :(
Contrary to what some doctors believe (assume), LC does not significantly increase our chances of developing either Crohn's disease or UC. But we are not immune to developing either of them, either. We basically have the same risk as anyone in the general population. We occasionally see someone who has both LC and UC, or LC and Crohn's, but those are definitely not common combinations, especially if we address the root cause of the perpetuation of the inflammation that causes these diseases, namely specific food sensitivities.
Virtually all of us here are sensitive to gluten, despite the fact that most of us test negative to the classic celiac screening blood tests. Those tests are so insensitive that they can only detect fully-developed celiac disease, and they don't even catch all of those cases. Your daughter's small stature is a very strong indication that she has celiac disease. Why most doctors are not capable of recognizing that symptom without even thinking about it is beyond me. They look but they don't see (if you know what I mean). If she hasn't been tested already, please ask her doctor to immediately test her for celiac disease. It's important, because as weak as those tests are, if she adopts a gluten-free diet to control her symptoms, within a few short weeks the tests will no longer be capable of detecting celiac disease, even if it is fully developed.
Her doctor apparently knows very little about treating LC. Please be aware that PPIs (such as Prilosec) are not only contraindicated with LC (because they can actually trigger the disease), but research shows that they cause the very symptoms that they are prescribed to treat. PPIs are a very iatrogenic drug, because after someone has taken them for a few weeks, it is almost impossible to wean off them. When a patient tries to stop taking them, they cause a rebound effect that causes worse symptoms than they had to begin with, because PPIs actually weaken the lower esophageal sphinctor, leading to increased leakage of stomach acid into the esophagus. The patient doesn't notice the pain from the reflux, because they lower the acidity of the stomach contents. But in addition to making the reflux worse, they also interfere with digestion (by lowering acidity), and this leads to even more problems with LC, since digestion is already a problem with LC. But no one who has LC should be taking a PPI, because they are a very common cause of LC. Shame on her doctor.
While we are still reacting, most of us react adversely to probiotics, so their use is counterproductive for most of us. The inflammation that causes LC is perpetuated by food sensitivities that are triggered when LC is triggered. Those foods cause the production of antibodies, leading to inflammation, and as long as the foods remain in our diet, the inflammation continues to be generated. Corticosteroids or other anti-inflammatory medications can sometimes mask the symptoms for a while, but as soon as the treatment is discontinued, the symptoms return, unless the sources of the inflammation are removed from the diet. Unfortunately, only a handful of GI specialists are aware of the diet connection, because somewhere along the line they have made the not only inappropriate, but just plain stupid assumption that diet has nothing to do with LC/CC/MC. The reality is, diet has everything to do with the proper treatment of this family of diseases. Claiming that diet has nothing to do with LC is like claiming that breathing polluted air has nothing to do with asthma or lung disease — it has everything to do with it.
One of our members here is a pediatrician, who has MC herself. She has been in remission by diet changes alone for over a dozen years now, so she can speak for the accuracy of my statements in this post. 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.
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JeffGordon100602
- Posts: 3
- Joined: Wed Oct 29, 2014 6:47 am
Thanks for the response Tex. Due to her small size and our family history of Crohn's and UC - and several IBS cases, that is why the doctor completed a colonoscopy with biopsies. They said they also tested her for celiac disease and it was negative - that's honestly what I thought she had due to easily bruising and bloody noses (but they only occur in dry months) - doctor is saying it's just coincidence. I've brought up diet and tracked her food for weeks, but her doctor doesn't even look at it. They told me they don't like to put children on a diet, and don't feel it's necessary. I've noticed her condition gets extremely bad when eating deep fried battered foods (like chicken nuggets, chicken tenders and fish, etc.). I've also read that a gluten-free diet is beneficial for this condition - and it seems like a tough diet to follow - but I'm thinking it's going to be worth trying... I've also considered trying organic foods - but I'm not sure if those make a difference or not... Since being on the steroid, I don't notice any problems with dairy, breads, or anything (besides the deep fried battered foods). I've never known her to have any food allergies - but from what I'm reading, this could be the cause of this disease for her. Her doctor said it us caused by long term use of NSAIDS, but she hasn't been on any medication long term. I also questioned the Prilosec as I read it causes diarrhea and could cause colitis (long term). She also had a dentist appointment recently, and her doctor asked if she was on any medications that could cause cavities - she had quite a few... Does LC have anything to do with her dental issues??? I'm questioning is she's even retaining any of the necessary vitamins and minerals her body needs. Her symptoms started about 2 months after she started an ADHD medication (Metadate) - but I took her off that about 4 months ago (and again doctor said it was coincidental).
It is just the worse feeling to have a chronically sick child. I know that you will pursue all avenues to find a level of wellness for her.
I am also new(ish) to this group. But I can share with you that my daughter starting having "heartburn" and other digestive and menstrual issues in her teens. She was very undersized until her late teens. When she had surgery in her 20's, the anesthesiologist told here that her esophagus was so eroded that she would be looking at esophageal cancer if she didn't get it under control. What has worked very well for her is a gluten and dairy free diet. She is also intolerant of most legumes, and some fruits and vegetables. She has it down to a science in her mid-thirties and really knows it if she falls off the wagon.
By being careful with her diet, she has achieved a good level of health. I sincerely hope that your daughter can achieve that too and will feel better soon.
I am also new(ish) to this group. But I can share with you that my daughter starting having "heartburn" and other digestive and menstrual issues in her teens. She was very undersized until her late teens. When she had surgery in her 20's, the anesthesiologist told here that her esophagus was so eroded that she would be looking at esophageal cancer if she didn't get it under control. What has worked very well for her is a gluten and dairy free diet. She is also intolerant of most legumes, and some fruits and vegetables. She has it down to a science in her mid-thirties and really knows it if she falls off the wagon.
By being careful with her diet, she has achieved a good level of health. I sincerely hope that your daughter can achieve that too and will feel better soon.
What? Her doctor doesn't like to put children on a diet, but she/he doesn't have any qualms about prescribing prednisone for her?Jeff wrote:They told me they don't like to put children on a diet, and don't feel it's necessary.
Either her doctor is nuts, or I am. You can take your pick. 
Prednisone is a serious drug, with serious health risks. The GF diet has no health risks.Yes, it's the gluten in the batter that causes her reactions to battered fried foods.
Gluten sensitivity (and celiac disease) is a leading cause of weak tooth enamel (and tooth decay). Most dentists can spot celiac disease before most other doctors can. I'm kind of surprised that her dentist didn't recognize the issue. Please check out this article from the Journal of The Canadian Dental Association:Jeff wrote:Does LC have anything to do with her dental issues???
Oral Manifestations of Celiac Disease: A Clinical Guide for Dentists
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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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Jeff,
Welcome aboard! You have so come to the right place! So sorry to hear about your daughter but you will get plenty of very sound advice here!
Interestingly, when I was 14, I spent the summer having virtually all my back teeth extensively filled! I recently (and I mean in the last month) had 3 further fillings. Essentially all my molars are filled and I have 3 crowns due to the teeth being so bad! Never made the connection and although I am not Celiac, even my GP now recognises that I am non-Celiac gluten sensitive!
Anne
Welcome aboard! You have so come to the right place! So sorry to hear about your daughter but you will get plenty of very sound advice here!
Interestingly, when I was 14, I spent the summer having virtually all my back teeth extensively filled! I recently (and I mean in the last month) had 3 further fillings. Essentially all my molars are filled and I have 3 crowns due to the teeth being so bad! Never made the connection and although I am not Celiac, even my GP now recognises that I am non-Celiac gluten sensitive!
Anne
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jeff
welcome to the group, sympathies that you had to find us, and that your daughter has such inflammed symptoms.
not sure how much reading of other posts/discussions you have done, I will give you some summary points to help you;
(keep in mind there are about 1900 members)
- about 80% of people here have tested negative for celiac, albeit, pretty much every one of those had drastic improvement when they stopped eating gluten.
- It is great that the predisone has helped reduced the symptoms, not sure how much reading you have done about long term use of these meds, but it is not a good long term solution. (even more so for a teenager) Following a 'weird' 'out there' strict eating plan as you read here may sound pretty full on, the thing is, it works for many.
- there are some that use medications with the eating plan that works for them. The sucky part of MC is that there is no one quick fix or guaranteed solution. What works for one, may not work for another. A med that works fantastic for one person, can cause major chaos for another. There are multiple options, and it is a bit of trial and error to figure out what will work best for your daughter.. Spend some time reading and asking questions so that you can make some informed decisions
- there are quite a few scientific backed studies that prove that long term inflammation in the gut has long term and wide reaching issues with our bodies. There is a strong case to take the diet changes seriously.
- sadly there are not many MC savy specialists/doctors out there. Majority of the people here have attained remission by the information, guidance and support given on this forum. (its not the doctors fault, it is the medical system and the information that is given to them)
- Accepting a diagnosis is hard work, to then see a bunch of people sort of contradict what your doctor has told you is even harder. The reason people are offering their suggestions is that we want your daughter to be symptom free and enjoying life. Alot of people here did 5 years or more with chronic symptoms (following the guidence of doctors) before they acknowledged that diet has alot to do with wellness.
if you have spare time, read the success stories area, read the posts aimed for new people and the subsequent discussions alot of the pro's and cons of various aspects of MC are discussed.. and feel free to ask questions,
hope this helps.
take care
welcome to the group, sympathies that you had to find us, and that your daughter has such inflammed symptoms.
not sure how much reading of other posts/discussions you have done, I will give you some summary points to help you;
(keep in mind there are about 1900 members)
- about 80% of people here have tested negative for celiac, albeit, pretty much every one of those had drastic improvement when they stopped eating gluten.
- It is great that the predisone has helped reduced the symptoms, not sure how much reading you have done about long term use of these meds, but it is not a good long term solution. (even more so for a teenager) Following a 'weird' 'out there' strict eating plan as you read here may sound pretty full on, the thing is, it works for many.
- there are some that use medications with the eating plan that works for them. The sucky part of MC is that there is no one quick fix or guaranteed solution. What works for one, may not work for another. A med that works fantastic for one person, can cause major chaos for another. There are multiple options, and it is a bit of trial and error to figure out what will work best for your daughter.. Spend some time reading and asking questions so that you can make some informed decisions
- there are quite a few scientific backed studies that prove that long term inflammation in the gut has long term and wide reaching issues with our bodies. There is a strong case to take the diet changes seriously.
- sadly there are not many MC savy specialists/doctors out there. Majority of the people here have attained remission by the information, guidance and support given on this forum. (its not the doctors fault, it is the medical system and the information that is given to them)
- Accepting a diagnosis is hard work, to then see a bunch of people sort of contradict what your doctor has told you is even harder. The reason people are offering their suggestions is that we want your daughter to be symptom free and enjoying life. Alot of people here did 5 years or more with chronic symptoms (following the guidence of doctors) before they acknowledged that diet has alot to do with wellness.
if you have spare time, read the success stories area, read the posts aimed for new people and the subsequent discussions alot of the pro's and cons of various aspects of MC are discussed.. and feel free to ask questions,
hope this helps.
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Anne wrote:I recently (and I mean in the last month) had 3 further fillings. Essentially all my molars are filled and I have 3 crowns due to the teeth being so bad! Never made the connection and although I am not Celiac, even my GP now recognises that I am non-Celiac gluten sensitive!
Some of the cleaning compounds traditionally used in dental offices contain gluten. Gluten-free versions are available, but apparently some dentists (and their dental hygiene associates) are not aware of this. IOW, if your teeth were cleaned as part of the work that you had done, it's possible that this could be what initially set the stage for your relapse. And any antibiotics used could certainly have played a role, also. Too many of the wrong kind of gut bacteria (dysbiosis) could be the source of the pain.I may be barking up the wrong tree here, but it never hurts to ask, because the answer could help to explain why your reaction has been so severe and so persistent. Gluten damage can take a relatively long time to heal, in some situations. Even if something else triggered the relapse, an issue such as this could certainly prolong the episode and make the symptoms more severe.
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 jeff. You might want to buy Tex's book by clicking on the picture of it on this page. It's a helpful resource and has many of the answers you might be looking for…… since your doctor doesn't seem to understand this disease.
I'm very sorry to hear that your daughter is suffering from this, but diet is crucial to long term remission. The drugs can only bring the inflammation down temporarily if we continue to eat the foods that are causing the inflammation in the first place. Almost all of us can't have gluten and most of us also stay away from dairy. Just because you don't see an immediate reaction when she eats something doesn't mean that it's not causing an inflammatory reaction. While we are trying to heal our guts, it's important to try to eat a low fiber diet. (fresh fruits, vegetables, legumes…etc.) . I know this all sounds very tough, but you get use to it once you are in the swing of things. It took me about 6 months before I started testing some fiber back in to my diet and a year before I could safely eat these foods on going.
If you stick to freshly cooked meats, cooked veggies, white rice, maybe potato, GF Chex cereals with unsweetened almond milk, eggs, and very little sugar, she should feel better as each day passes. Down the road, you can experiment with GF breads and crackers, but it's best to stay away from processed foods at first. It's time to HEAL her gut right now.
If you want to know for sure what main foods she is reacting to, check out Enterolab. They have the only test in the country that accurately measures IgA antibody production to certain foods.
Good luck and ask anything
Leah
I'm very sorry to hear that your daughter is suffering from this, but diet is crucial to long term remission. The drugs can only bring the inflammation down temporarily if we continue to eat the foods that are causing the inflammation in the first place. Almost all of us can't have gluten and most of us also stay away from dairy. Just because you don't see an immediate reaction when she eats something doesn't mean that it's not causing an inflammatory reaction. While we are trying to heal our guts, it's important to try to eat a low fiber diet. (fresh fruits, vegetables, legumes…etc.) . I know this all sounds very tough, but you get use to it once you are in the swing of things. It took me about 6 months before I started testing some fiber back in to my diet and a year before I could safely eat these foods on going.
If you stick to freshly cooked meats, cooked veggies, white rice, maybe potato, GF Chex cereals with unsweetened almond milk, eggs, and very little sugar, she should feel better as each day passes. Down the road, you can experiment with GF breads and crackers, but it's best to stay away from processed foods at first. It's time to HEAL her gut right now.
If you want to know for sure what main foods she is reacting to, check out Enterolab. They have the only test in the country that accurately measures IgA antibody production to certain foods.
Good luck and ask anything
Leah