Pediatric Collagenous Colitis
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Pediatric Collagenous Colitis
My 11 year old daughter was just diagnosed with Collagenous Colitis. She also has Celiac and we have been on a gluten free diet for 6 years. I understand that this is rare in pediatric cases and was wondering if anyone has more information on how this can affect kids. My main concern is stunted growth.
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi mdmaloney, and welcome.
Sorry to hear about your daughter's trouble. Is there any chance that there is gluten contamination because of other gluten eaters in the house, or cross reactions? I wonder if it could be that. If you can afford it, I would consider doing Enterolab to see what additional intolerances she may have, namely, to dairy, eggs, soy. These are some of the biggest secondary intolerances for those of us with CC.
I can't address the pediatric issue, but there are other young people and parents of MCers here so keep digging around here and ask as many questions as you would like. I hope she has been put on a treatment that helps with the diarrhea. I'm sure others will chime in.
Best wishes to you both,
Nancy
Sorry to hear about your daughter's trouble. Is there any chance that there is gluten contamination because of other gluten eaters in the house, or cross reactions? I wonder if it could be that. If you can afford it, I would consider doing Enterolab to see what additional intolerances she may have, namely, to dairy, eggs, soy. These are some of the biggest secondary intolerances for those of us with CC.
I can't address the pediatric issue, but there are other young people and parents of MCers here so keep digging around here and ask as many questions as you would like. I hope she has been put on a treatment that helps with the diarrhea. I'm sure others will chime in.
Best wishes to you both,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi MD.
It's not as rare as the GI specialists would have us believe. They just aren't aware of it's actual prevalence because if they don't do a colonoscopy with biopsies they can't find the disease, and it's probably not a common practice for them to do that in pediatric cases.
I agree with Nancy, unless CC was there to begin with and her doctor simply failed to diagnose it when celiac disease was diagnosed, later development suggests the possibility/likelihood of cross-contamination with gluten in her diet. Of course that's pure speculation, and CC can develop in many ways, but CC does not develop overnight, so there is a good possibility that it was simply overlooked when she was first diagnosed with celiac disease. At any rate, she almost surely has other food sensitivities in addition to gluten, that will need to be removed from her diet in order for her to get her life back.
You might gain some insight into the problem, and inspiration for successful resolution, by reading about the experiences of another young lady whose mother joined this board and successfully treated her daughter almost 7 years ago.
My 2 Year Old was just diagnosed with LC :(
Camryn's Enterolab Results are in!
Hi everyone, it's been a while - Update on Camryn
The bottom line is, with the proper diet changes, she should be able to grow normally, and she should be healthier than most kids her age (she will be healthier than others because her diet will be free of the inflammatory foods that others are eating). Again, welcome aboard, and please feel free to ask anything. We will help in any way we can.
Tex
It's not as rare as the GI specialists would have us believe. They just aren't aware of it's actual prevalence because if they don't do a colonoscopy with biopsies they can't find the disease, and it's probably not a common practice for them to do that in pediatric cases.
I agree with Nancy, unless CC was there to begin with and her doctor simply failed to diagnose it when celiac disease was diagnosed, later development suggests the possibility/likelihood of cross-contamination with gluten in her diet. Of course that's pure speculation, and CC can develop in many ways, but CC does not develop overnight, so there is a good possibility that it was simply overlooked when she was first diagnosed with celiac disease. At any rate, she almost surely has other food sensitivities in addition to gluten, that will need to be removed from her diet in order for her to get her life back.
You might gain some insight into the problem, and inspiration for successful resolution, by reading about the experiences of another young lady whose mother joined this board and successfully treated her daughter almost 7 years ago.
My 2 Year Old was just diagnosed with LC :(
Camryn's Enterolab Results are in!
Hi everyone, it's been a while - Update on Camryn
The bottom line is, with the proper diet changes, she should be able to grow normally, and she should be healthier than most kids her age (she will be healthier than others because her diet will be free of the inflammatory foods that others are eating). Again, welcome aboard, and please feel free to ask anything. We will help in any way we can.
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 & Welcome
Is it possible that gluten is getting into your daughter's diet by means of gf products or other grains that might be contaminated or have a high enough level of gluten to be causing a problem. Also, as Nancy stated many of us can not tolerate dairy, eggs, or soy. I am assuming your daughter has the symptoms of CC, maybe try an elimination diet to see what foods may be causing symptoms.
Is it possible that gluten is getting into your daughter's diet by means of gf products or other grains that might be contaminated or have a high enough level of gluten to be causing a problem. Also, as Nancy stated many of us can not tolerate dairy, eggs, or soy. I am assuming your daughter has the symptoms of CC, maybe try an elimination diet to see what foods may be causing symptoms.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Sorry, I should have added more information to the original post.
There is no gluten in her system. Her lab work is perfect with the exception of low vitamin D occasionally. Our entire family eats gluten free at home. We recently had a food sensitivity test done which shows 29 foods that she may react to. Only 2 of which were on a higher level. We will be eliminating foods soon, but I wanted to wait until we had the endoscopy finished before we did. I am so happy that they did not find any damage and that she has healed from 6 years ago. I was convinced that she had Crohn's and was expecting that the Doctor would find more damage.
She has been struggling with stomach pain and diarrhea since she was 2 years old. They did not do a lower endoscopy on her when she was diagnosed with Celiac, and from what I understand most pediatric doctors consider this an "adult" diagnosis. I can see how it could be overlooked in many patients. I can not tell you how many times that I was told that she would out grow diarrhea, and that some kids just go through a few years of it. I am just happy to finally have a diagnosis, and I am hopeful that we can find some relief from her pain! I am just starting the process to learn what I can about CC in pediatric cases. This site seems like it can be a very useful tool!
My main questions are:
Will this affect her growth? She is in the 4th percentile and has been in a steady slump for a few years.
Will she have to take medication for the rest of her life, or will her system eventually heal?
There is no gluten in her system. Her lab work is perfect with the exception of low vitamin D occasionally. Our entire family eats gluten free at home. We recently had a food sensitivity test done which shows 29 foods that she may react to. Only 2 of which were on a higher level. We will be eliminating foods soon, but I wanted to wait until we had the endoscopy finished before we did. I am so happy that they did not find any damage and that she has healed from 6 years ago. I was convinced that she had Crohn's and was expecting that the Doctor would find more damage.
She has been struggling with stomach pain and diarrhea since she was 2 years old. They did not do a lower endoscopy on her when she was diagnosed with Celiac, and from what I understand most pediatric doctors consider this an "adult" diagnosis. I can see how it could be overlooked in many patients. I can not tell you how many times that I was told that she would out grow diarrhea, and that some kids just go through a few years of it. I am just happy to finally have a diagnosis, and I am hopeful that we can find some relief from her pain! I am just starting the process to learn what I can about CC in pediatric cases. This site seems like it can be a very useful tool!
My main questions are:
Will this affect her growth? She is in the 4th percentile and has been in a steady slump for a few years.
Will she have to take medication for the rest of her life, or will her system eventually heal?
If you want to correct her diet accurately and reliably, you need to order the stool tests (Panel A1 + C1) from EnteroLab. The blood test results that you are currently relying on are pretty much worthless for treating CC due to their lack of sensitivity and poor reliability. The antibodies are in the gut, not in the blood. The stool tests will accurately tell you whether or not there are any traces of gluten in her diet. The blood tests are so insensitive that they will only show a positive result if there is enough gluten in the diet to cause at least a Marsh 3 level of damage in the small intestine. That's a lot of damage.Tex wrote:The bottom line is, with the proper diet changes, she should be able to grow normally
There is no reason for her to take medications. Please read the threads at the links that I posted in my previous message. I posted those links for your and your daughter's benefit, not mine. Kids heal quickly. With a safe diet, her digestive system will completely heal in less than a year. It takes adults at least 3–5 years to heal.
Who am I to make those claims? I wrote the book on this disease, FWIW.
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 M.D.
Welcome!
If you don't already have Tex's book check the link in the upper right hand corner. It is money well spent.
Enterolab tests are the only ones that have any value for us. I spent $2500 on food sensitivity tests recommended by GI doc that were basically useless.
We have an inflammatory bowel disease. The drugs for this are strong. My PCP even delayed sending me to Gastro as he didn't want me to have an inflammatory bowel disease and my PCP's comment was he thought the side effects from drugs for treating inflammatory bowel disease in most cases were worse than the disease.
The drugs prescribed for MC don't heal MC. They ease the symptoms but in many cases can slow healing. We have to reduce inflammation through diet to heal.
We don't heal from MC. We go into remission. MC can reoccur through our lifetime.
The good new is your daughter is young and should go into remission fairly quickly. Many many folks on this board have gone into remission from diet alone.
I was on Entocort for about 4.5 months. I found it to be a very strong drug. I was forced by my employer/friends to go on drugs even though I was about 80% improved before getting on drugs. Entocort actually slows healing. (Tex can explain if you have questions. )Entocort is tough to get off of.
It is a strong drug.
Regarding calories for growth.....we eat like youngsters have eaten for centuries. Most folks do well eating unprocessed....protein 3x per day, mashed potatoes, sweet potatoes, rice, overcooked veggies like carrots or squash, banana, applesauce (sparingly), olive oil generously, coconut oil, stay away from roughage (raw veggies or salads for now). Some folks have almond milk. After she is doing better some GF rice chex sparingly and simply lays potato chips sparingly. I tend to eat to many of the chips LOL.
We get a lot of members in their early 20's who have suffered undiagnosed for 10-15 years. Their docs told them they had IBS until they had colonoscopy in their early 20's and MC was diagnosed.
Sadly with the obesity epidemic that we have in this country your daughters diet will be healthier than what most youngsters are eating today!
It takes going GF, Dairy Free and Soy free for almost all of us and for some of us egg free.
Your daughter has youth on her side and should bounce back pretty quickly.
Brandy
Welcome!
If you don't already have Tex's book check the link in the upper right hand corner. It is money well spent.
Enterolab tests are the only ones that have any value for us. I spent $2500 on food sensitivity tests recommended by GI doc that were basically useless.
We have an inflammatory bowel disease. The drugs for this are strong. My PCP even delayed sending me to Gastro as he didn't want me to have an inflammatory bowel disease and my PCP's comment was he thought the side effects from drugs for treating inflammatory bowel disease in most cases were worse than the disease.
The drugs prescribed for MC don't heal MC. They ease the symptoms but in many cases can slow healing. We have to reduce inflammation through diet to heal.
We don't heal from MC. We go into remission. MC can reoccur through our lifetime.
The good new is your daughter is young and should go into remission fairly quickly. Many many folks on this board have gone into remission from diet alone.
I was on Entocort for about 4.5 months. I found it to be a very strong drug. I was forced by my employer/friends to go on drugs even though I was about 80% improved before getting on drugs. Entocort actually slows healing. (Tex can explain if you have questions. )Entocort is tough to get off of.
It is a strong drug.
Regarding calories for growth.....we eat like youngsters have eaten for centuries. Most folks do well eating unprocessed....protein 3x per day, mashed potatoes, sweet potatoes, rice, overcooked veggies like carrots or squash, banana, applesauce (sparingly), olive oil generously, coconut oil, stay away from roughage (raw veggies or salads for now). Some folks have almond milk. After she is doing better some GF rice chex sparingly and simply lays potato chips sparingly. I tend to eat to many of the chips LOL.
We get a lot of members in their early 20's who have suffered undiagnosed for 10-15 years. Their docs told them they had IBS until they had colonoscopy in their early 20's and MC was diagnosed.
Sadly with the obesity epidemic that we have in this country your daughters diet will be healthier than what most youngsters are eating today!
It takes going GF, Dairy Free and Soy free for almost all of us and for some of us egg free.
Your daughter has youth on her side and should bounce back pretty quickly.
Brandy
Hi M.D.
I realized I did not answer question 2. She will not have to take medication for the rest of her life. I was on Entocort for 4.5 months. It took about 18 months after getting off of Entocort to heal. I've been in solid remission for about 14 months. Having been on Entocort I'd think hard regarding putting an 11 year old on a steroid, i.e. I'd try diet changes for 8 weeks. GF, DF, SF, EF and no fiber for 8 weeks. She should respond pretty quickly to diet changes due to youth. It is no picnic getting off of Entocort. There is risk of relapse in getting off of Entocort. My age is 54 as a reference. Young folks seem to bounce back much quicker than oldsters.
Brandy
I realized I did not answer question 2. She will not have to take medication for the rest of her life. I was on Entocort for 4.5 months. It took about 18 months after getting off of Entocort to heal. I've been in solid remission for about 14 months. Having been on Entocort I'd think hard regarding putting an 11 year old on a steroid, i.e. I'd try diet changes for 8 weeks. GF, DF, SF, EF and no fiber for 8 weeks. She should respond pretty quickly to diet changes due to youth. It is no picnic getting off of Entocort. There is risk of relapse in getting off of Entocort. My age is 54 as a reference. Young folks seem to bounce back much quicker than oldsters.
Brandy
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group.....
MC can affect anyone of any age......
I agree with what has been suggested above, diet management is your best long term option, and the best way to minimise the need for medications....
Following the right diet and minimising inflammation will also protect her from other chronic issues later in life.
Also starting Vit D supplementation will be good for, reducing inflammation, all round wellness and optimising nutrient /mineral absorption....
Hope this helps...
Do some searching and reading on the forum..... The member success stories area will give you an indicator of what others have done diet wise...
MC can affect anyone of any age......
I agree with what has been suggested above, diet management is your best long term option, and the best way to minimise the need for medications....
Following the right diet and minimising inflammation will also protect her from other chronic issues later in life.
Also starting Vit D supplementation will be good for, reducing inflammation, all round wellness and optimising nutrient /mineral absorption....
Hope this helps...
Do some searching and reading on the forum..... The member success stories area will give you an indicator of what others have done diet wise...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome!
I also recommend Enterolab testing, but in addition, since you have a confirmed celiac dx, I would also recommend Cyrex Labs' Celiac Cross-Reactivity blood test. I did this and learned that I react to buckwheat, amaranth, sesame seeds, and milk the same way I react to gluten. Coffee was borderline too, and it has always made me sick.
After 2 years off sesame seeds, I tested it last week and had some delicious hummus made with tahini. Sure enough, the unmistakable gluten D soon followed. I was amazed.
Vera
I also recommend Enterolab testing, but in addition, since you have a confirmed celiac dx, I would also recommend Cyrex Labs' Celiac Cross-Reactivity blood test. I did this and learned that I react to buckwheat, amaranth, sesame seeds, and milk the same way I react to gluten. Coffee was borderline too, and it has always made me sick.
After 2 years off sesame seeds, I tested it last week and had some delicious hummus made with tahini. Sure enough, the unmistakable gluten D soon followed. I was amazed.
Vera
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone