Greetings. I just found and joined this board. My eight year old was just diagnosed yesterday with lymphocytic colitis and I am trying to learn everything I can. How common is this in children? I can't find much from the pediatric point of view. A little history on him:
He has been struggling with general abnominal pain for well over a year. Some days it would keep in home from school. In interviewing him, it appears that he has constant moderate discomfort, though you would never suspect it...he goes and goes. We tested for celiac...negative. We tested for food allergies and removed those foods (milk, egg, pineapple, tomatoes, coconut). Nothing improved. We removed gluten for nine months (pretty strict about it too, we never intentional infracted and did everything we could to prevent contamination). Conditions worsened. Despite eating very well in both quantity and quality, he began to lose weight and just looks sickly. This was to the point of muscle tone effect. During this time, he had an upper GI scope and a duodernal ulcer (sp?) was found. This was treated with Prilosac and then severs diarrhea ensued. The Dr pulled him off the Prilosac in case that was causing it and order an ultrasound and Barium swallow. These came back normal. Once the barium cleared his system, the severe diarrhea cleared up (and remains cleared up to date). The Dr ordered a repeat upper GI to check on his ulcer and a colonoscopy due to the diarrhea. Everything looked normal, but as the diagnosis reflects, the biopsies showed extremely elevated lymphocytes. And now you are caught up.
So there are two things that I hope that you veterans can help me with. First ANY info about dealing with this in children. Second, we are starting to reintroduce gluten in small quantities. Things only got worse on the GF diet and so far he is tolerating the return to his diet very well. Any other suggestions on diet or supplements.
Thanks for your help.
Pediatric Lympocytic Colitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Mom2boys, I'm glad you found us.We had a 2 and a half year old diagnosed with LC. Here is her Mom's first post: http://www.perskyfarms.com/phpBB2/viewt ... ght=camryn
A lucky few of us are not gluten intolerant....Dairy and soy are the next suspects after gluten.
You can search the PP archives for subjects that interest you. Other suggested reading is at www.finerhealth.com and or www.enterolab.com I know it is all overwhelming but it will get better.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome! I'm sure others with more experience will chime in soon, but I’ll post a few comments.
First of all, there are several children (actually parents of children) with MC on the forum. Next, the severe diarrhea when he was put on Prilosec is very suspicious. Proton pump inhibitors like Prilosec are well-documented to cause or worsen MC. And the fact that he improved when taken off is also a sign that this drug was a major factor.
Since your son has had milder symptoms for a long time, and you are having problems figuring out just what he is sensitive to by elimination diet, I would highly encourage you to have him tested for sensitivities to gluten, dairy, soy, egg and yeast by Enterolab. It’s a highly sensitive stool test and takes the guesswork out. Many here have been tested and can testify as to its accuracy.
And in general, we have found that fiber is not our friend. Avoid lettuce and other greens entirely, as it seems to be a universal irritant. Peel and cook veggies, and peel fruits like apples.
It’s a long road, but the accumulated knowledge and support you will find here will be a great help!
Rosie
First of all, there are several children (actually parents of children) with MC on the forum. Next, the severe diarrhea when he was put on Prilosec is very suspicious. Proton pump inhibitors like Prilosec are well-documented to cause or worsen MC. And the fact that he improved when taken off is also a sign that this drug was a major factor.
Since your son has had milder symptoms for a long time, and you are having problems figuring out just what he is sensitive to by elimination diet, I would highly encourage you to have him tested for sensitivities to gluten, dairy, soy, egg and yeast by Enterolab. It’s a highly sensitive stool test and takes the guesswork out. Many here have been tested and can testify as to its accuracy.
And in general, we have found that fiber is not our friend. Avoid lettuce and other greens entirely, as it seems to be a universal irritant. Peel and cook veggies, and peel fruits like apples.
It’s a long road, but the accumulated knowledge and support you will find here will be a great help!
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Hi mom,
Welcome to our internet family. I can't add much to the good advice that you have already received. I definitely agree that ordering stool tests from Enterolab would be the best way to proceed. That will remove any doubt about the food proteins for which they can test for antibodies, which will save a lot of time in trying to decide on a safe diet for our son.
If it is shown that he does not actually have any food intolerances, (which would be quite rare, for someone with LC), it is possible that the constant pain, and inability to gain weight might be due to a rare condition known as Median Arcuate Ligament Syndrome, (MALS). MALS is almost always overlooked by doctors, so it is rarely discovered. If he already has a diagnosis of LC, though, that reduces the chances that his symptoms might be due to MALS.
http://en.wikipedia.org/wiki/Median_arc ... t_syndrome
Rosie's comments about fruits and vegetables are very important. Absolutely no lettuce, and no raw, unpeeled fruits or vegetgables, (except for bananas - provided that bananas don't cause him any problems). Bananas are good, if tolerated, because electrolyte loss is a constant problem with the diarrhea that comes with LC, and bananas are an excellent source of potassium.
Actually, we have had quite a few cases under 10 years of age, but unfortunately, most mothers don't stick around very long, and they are afraid to question the treatment of their doctors, so we never know if they had any success in resolving their kid's issues, or not. The mother of the girl mentioned by Joan, immediately adopted the information she found here, and her daughter, (now 3, I believe), quickly achieved remission, (to the surprise of the pediatrician group that had diagnosed her). She only posts occasionally, these days, with updates, (and her daughter was still doing great, at the last update), so if you would like to correspond with her, I'm sure she would be willing to answer questions.
Also, one of our members, who posts regularly, is a pediatrician, and she has LC herself. She has been in remission for many years, now, despite the fact that she has to totally avoid many foods. At her last colonoscopy, (a few weeks ago), her biopsies showed that she is now totally free of any markers of LC, which is quite an accomplishment, for someone with so many food intolerances.
The reason why the diet does not work for so many people, is because they have other, (undiscovered), intolerances, and unless every one of them is completely removed from the diet, symptoms will continue, though they may not be as severe, with most of the intolerances eliminated.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I can't add much to the good advice that you have already received. I definitely agree that ordering stool tests from Enterolab would be the best way to proceed. That will remove any doubt about the food proteins for which they can test for antibodies, which will save a lot of time in trying to decide on a safe diet for our son.
If it is shown that he does not actually have any food intolerances, (which would be quite rare, for someone with LC), it is possible that the constant pain, and inability to gain weight might be due to a rare condition known as Median Arcuate Ligament Syndrome, (MALS). MALS is almost always overlooked by doctors, so it is rarely discovered. If he already has a diagnosis of LC, though, that reduces the chances that his symptoms might be due to MALS.
http://en.wikipedia.org/wiki/Median_arc ... t_syndrome
Rosie's comments about fruits and vegetables are very important. Absolutely no lettuce, and no raw, unpeeled fruits or vegetgables, (except for bananas - provided that bananas don't cause him any problems). Bananas are good, if tolerated, because electrolyte loss is a constant problem with the diarrhea that comes with LC, and bananas are an excellent source of potassium.
Actually, we have had quite a few cases under 10 years of age, but unfortunately, most mothers don't stick around very long, and they are afraid to question the treatment of their doctors, so we never know if they had any success in resolving their kid's issues, or not. The mother of the girl mentioned by Joan, immediately adopted the information she found here, and her daughter, (now 3, I believe), quickly achieved remission, (to the surprise of the pediatrician group that had diagnosed her). She only posts occasionally, these days, with updates, (and her daughter was still doing great, at the last update), so if you would like to correspond with her, I'm sure she would be willing to answer questions.
Also, one of our members, who posts regularly, is a pediatrician, and she has LC herself. She has been in remission for many years, now, despite the fact that she has to totally avoid many foods. At her last colonoscopy, (a few weeks ago), her biopsies showed that she is now totally free of any markers of LC, which is quite an accomplishment, for someone with so many food intolerances.
The reason why the diet does not work for so many people, is because they have other, (undiscovered), intolerances, and unless every one of them is completely removed from the diet, symptoms will continue, though they may not be as severe, with most of the intolerances eliminated.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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 Mom!
!
You are really kind of lucky that they actually tested for and found the LC. Many doctors think it is a condition that only affects older folk, and so they just don't look for it. Your doctor is off to a good start.
Generally we find that the three big things which cause problems are gluten (most of us), Dairy (nearly as many of us) and soy (about half of us). Other foods can cause problems for a smaller number of individuals, and many other foods can be irritants until our gut is healed.
When your son gets worse on a GF diet, you may find that he is actually responding not to the lack of gluten, but to the other things which have increased by going on that diet. For example, many GF packaged foods use a lot of soy, tapioca and various gums such as carrageenen. All of these can be problems. It is also common to increase the amount of dairy eaten as an alternative to gluten foods. It may be necessary to remove multiple things at the same time - a 'basic' diet with minimal packaged food can be an approach to consider.
I would second the suggestion to seriously consider the Enterolab stool testing. It is way more sensitive than the standard tests your doctor will order. While your son is doing well this would be easier and you will have the results for when he next has a flare.
My concern with gluten for your son is that it may not be causing the diarrhea but may still be causing him other problems that you have not noticed in a resilient child. For example, gluten does not cause me to have D - dairy causes that. What gluten causes is odd inflammation across the body, sore joints and brain fog. The brain fog is important in a child, as you want to make sure he is doing the best he can academically, and he will struggle to reach his potential if his head always feels fuzzy (kinda like how you struggle to think when you have a cold). He probably won't be able to tell you he feels this way, because he won't know what the alternative feels like. And whilst we hope gluten isn't a problem for him, the odds are not really on his side.
As Tex says, please feel free to ask as much as you want. There is a lot of learn about your options for managing this.
Lyn
!You are really kind of lucky that they actually tested for and found the LC. Many doctors think it is a condition that only affects older folk, and so they just don't look for it. Your doctor is off to a good start.
Generally we find that the three big things which cause problems are gluten (most of us), Dairy (nearly as many of us) and soy (about half of us). Other foods can cause problems for a smaller number of individuals, and many other foods can be irritants until our gut is healed.
When your son gets worse on a GF diet, you may find that he is actually responding not to the lack of gluten, but to the other things which have increased by going on that diet. For example, many GF packaged foods use a lot of soy, tapioca and various gums such as carrageenen. All of these can be problems. It is also common to increase the amount of dairy eaten as an alternative to gluten foods. It may be necessary to remove multiple things at the same time - a 'basic' diet with minimal packaged food can be an approach to consider.
I would second the suggestion to seriously consider the Enterolab stool testing. It is way more sensitive than the standard tests your doctor will order. While your son is doing well this would be easier and you will have the results for when he next has a flare.
My concern with gluten for your son is that it may not be causing the diarrhea but may still be causing him other problems that you have not noticed in a resilient child. For example, gluten does not cause me to have D - dairy causes that. What gluten causes is odd inflammation across the body, sore joints and brain fog. The brain fog is important in a child, as you want to make sure he is doing the best he can academically, and he will struggle to reach his potential if his head always feels fuzzy (kinda like how you struggle to think when you have a cold). He probably won't be able to tell you he feels this way, because he won't know what the alternative feels like. And whilst we hope gluten isn't a problem for him, the odds are not really on his side.
As Tex says, please feel free to ask as much as you want. There is a lot of learn about your options for managing this.
Lyn
Hi Mom,
Welcome! Sounds like you are on the right track looking at diet. I think Lyn makes an excellent point about gluten. I had many non-GI symptoms from gluten, so I encourage you to keep the GF diet and continue looking for other intolerances. Keep in mind that gluten doesn't always cause diarrhea - sometimes the symptom is constipation, but damage could still be occurring. Enterolab will clear this issue up for you.
I have a 10 year old with numerous food sensitivities - he follows a diet that is gluten/dairy/corn free, plus a few other things like high fructose fruits. I am also a dietitian and sometimes work with children. One of the intolerances I am seeing more and more in children with GI issues is corn, my son included. Enterolab currently does not offer a corn test, although I think it is in the works becasue Dr. Fine realizes it's a big problem. The problem with kids and corn is that corn is in many, many products that kids eat, like HFCS in soda and other sweets, snack chips, breakfast cereals etc. Another issue with kids and diarrhea can be fruit as they tend to drink lots of juice and eat lots of fruit. Soy/legumes could also be an issue, especially on a dairy free diet since many dairy replacements are soy based. Again, Enterolab testing could help.
Dealing with children is different and I know how it pulls at your heartstrings to restrict diet, but I encourage you to continue looking for the triggers.
Best Wishes,
Mary Beth
Welcome! Sounds like you are on the right track looking at diet. I think Lyn makes an excellent point about gluten. I had many non-GI symptoms from gluten, so I encourage you to keep the GF diet and continue looking for other intolerances. Keep in mind that gluten doesn't always cause diarrhea - sometimes the symptom is constipation, but damage could still be occurring. Enterolab will clear this issue up for you.
I have a 10 year old with numerous food sensitivities - he follows a diet that is gluten/dairy/corn free, plus a few other things like high fructose fruits. I am also a dietitian and sometimes work with children. One of the intolerances I am seeing more and more in children with GI issues is corn, my son included. Enterolab currently does not offer a corn test, although I think it is in the works becasue Dr. Fine realizes it's a big problem. The problem with kids and corn is that corn is in many, many products that kids eat, like HFCS in soda and other sweets, snack chips, breakfast cereals etc. Another issue with kids and diarrhea can be fruit as they tend to drink lots of juice and eat lots of fruit. Soy/legumes could also be an issue, especially on a dairy free diet since many dairy replacements are soy based. Again, Enterolab testing could help.
Dealing with children is different and I know how it pulls at your heartstrings to restrict diet, but I encourage you to continue looking for the triggers.
Best Wishes,
Mary Beth
Gluten article by Dr. Mark Hyman
http://www.huffingtonpost.com/dr-mark-h ... 79089.html
Great point, Tex, about the mothers listening to their uninformed docs and dismissing the PP. I still feel terrible for the child being treated at Iowa U. because her Mom couldn't think outside the box........
http://www.perskyfarms.com/phpBB2/viewt ... light=iowa
Great point, Tex, about the mothers listening to their uninformed docs and dismissing the PP. I still feel terrible for the child being treated at Iowa U. because her Mom couldn't think outside the box........
http://www.perskyfarms.com/phpBB2/viewt ... light=iowa
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Mom!
I am the pediatrician with MC that Tex referred to! You have already received excellent advice, so I don't have much to add. I think MC is more common in the pediatric population than docs know and is therefore underdiagnosed.
I can't recommend Dr. Fine's tests enough! Most of us DO have negative blood tests for celiac disease, just like your son, but nevertheless have significant gluten intolerance (and frequently additional intolerances). Since Dr. Fine's tests look for antibodies in the stool (rather than in the blood), he is much more likely to find the major offending foods. Most docs have no clue that there can be a serious gluten sensitivity that cannot be picked up with the classic celiac blood tests. Sigh. And, as far as we know, no other lab in this country is doing the stool tests for antibodies. In fact, folks here from around the world (Hong Kong, Spain, etc.) are using Dr. Fine's lab!
Best wishes on the road to recovery. It will take a while to figure out the offending foods, but you will! Hopefully you will get some support from the medical community, but don't be surprised if you don't.
Love,
Polly
P.S. Sometimes after a "cleanout" (like barium enema or for colonoscopy) the disease improves for a while. Dr. Fine would say that it is because the gut antibodies to the offending foods are eliminated, washed out. However, they will return over time if the same offending foods are eaten.
I am the pediatrician with MC that Tex referred to! You have already received excellent advice, so I don't have much to add. I think MC is more common in the pediatric population than docs know and is therefore underdiagnosed.
I can't recommend Dr. Fine's tests enough! Most of us DO have negative blood tests for celiac disease, just like your son, but nevertheless have significant gluten intolerance (and frequently additional intolerances). Since Dr. Fine's tests look for antibodies in the stool (rather than in the blood), he is much more likely to find the major offending foods. Most docs have no clue that there can be a serious gluten sensitivity that cannot be picked up with the classic celiac blood tests. Sigh. And, as far as we know, no other lab in this country is doing the stool tests for antibodies. In fact, folks here from around the world (Hong Kong, Spain, etc.) are using Dr. Fine's lab!
Best wishes on the road to recovery. It will take a while to figure out the offending foods, but you will! Hopefully you will get some support from the medical community, but don't be surprised if you don't.
Love,
Polly
P.S. Sometimes after a "cleanout" (like barium enema or for colonoscopy) the disease improves for a while. Dr. Fine would say that it is because the gut antibodies to the offending foods are eliminated, washed out. However, they will return over time if the same offending foods are eaten.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.