Visit the Microscopic Colitis Foundation Website
PEDIATRIC COLLAGENOUS COLITIS
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
PEDIATRIC COLLAGENOUS COLITIS
My daughter is two years old, former preemie and only weights 16 lbs now. She has had diarrhea for 4 months now, she has already lost 4 lbs. She had and upper GI and Colonoscopy done and they diagnosed her with Collagenous Colitis. They do not know much about it at her Specialty Clinic at the University of Iowa hospital and clinics. If anyone knows of a doctor/ hospital that knows more about Pediatric Collagenous Colitis. Or if your child is going through the same thing. Please contact me.
Hi,
Welcome to our internet family. Another member, Camryn'sMommy, had/has an almost identical situation, except that her daughter has LC, rather than CC. She resolved the symptoms by diet changes alone. I have to get back to work, but here are all her posts, and if you go through them, you will learn a lot. Note that they are listed as newest first, so you will need to go to the oldest page and work backwards, to keep things in proper chronological order. After you have written 4 more posts, the system will allow you to send an e-mail, or a Personal Message to Camryn'sMommy.
If you need any help with navigating through the posts, or anything else, please don't hesitate to ask. I'll be back in about 4 or 5 hours.
http://www.perskyfarms.com/phpBB2/searc ... n%27sMommy
Again, welcome aboard.
Tex (Wayne)
P. S. Harma, thanks for helping.
Welcome to our internet family. Another member, Camryn'sMommy, had/has an almost identical situation, except that her daughter has LC, rather than CC. She resolved the symptoms by diet changes alone. I have to get back to work, but here are all her posts, and if you go through them, you will learn a lot. Note that they are listed as newest first, so you will need to go to the oldest page and work backwards, to keep things in proper chronological order. After you have written 4 more posts, the system will allow you to send an e-mail, or a Personal Message to Camryn'sMommy.
If you need any help with navigating through the posts, or anything else, please don't hesitate to ask. I'll be back in about 4 or 5 hours.
http://www.perskyfarms.com/phpBB2/searc ... n%27sMommy
Again, welcome aboard.
Tex (Wayne)
P. S. Harma, thanks for helping.
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.
Welcome Hmarie,
My heart goes out to you and your daughter, but she can get better. You have come to the right place. As you've noticed, doctors are not very familiar with this disease, and even less accepting that food can help alleviate the symptoms.
I would recommend that you immediately eliminate all gluten from your daughter's diet. If you need help in understanding a gluten-free diet, you can read about it here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
I've always been impressed with the rapid recovery that Camyrn made once she began a gluten-free diet. She's also had to eliminate chocolate, but I believe those are her only two problems. You are fortunate that your daughter's doctors have given you a correct diagnosis and you can start her on the road to recovery.
Please don't hesitate to ask us for help. We are here to help you and there isn't much we haven't heard here.
Gloria
My heart goes out to you and your daughter, but she can get better. You have come to the right place. As you've noticed, doctors are not very familiar with this disease, and even less accepting that food can help alleviate the symptoms.
I would recommend that you immediately eliminate all gluten from your daughter's diet. If you need help in understanding a gluten-free diet, you can read about it here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
I've always been impressed with the rapid recovery that Camyrn made once she began a gluten-free diet. She's also had to eliminate chocolate, but I believe those are her only two problems. You are fortunate that your daughter's doctors have given you a correct diagnosis and you can start her on the road to recovery.
Please don't hesitate to ask us for help. We are here to help you and there isn't much we haven't heard here.
Gloria
You never know what you can do until you have to do it.
Camryn's Mommy's post that I took to my GI
"Thanks everyone. She has had a really good couple of days and I think all of the Thanksgiving oops have made their way out of her system. It is just amazing though how well this gf diet works. If she accidentally eats something with gluten she gets clumps of mucus in her diarrhea. If gluten is not eaten at all, the stools are formed with no mucus. I just can't believe this isn't more widely known among the medical community. Camryn's Dr. suggested writing her up as a case study. I would do it if it meant that it would help other kids/adults that have this disease.
_________________
Mommy to Camryn - 2 1/2 years old - dx'd with LC 8/08"
Your doctors will most likely say that diet has nothing to do with Microscopic Colitis (CC and LC), we know otherwise.
I found Tex, Dr. Polly (pediatrician) and the Potty People on a Friday and by Monday I was gluten free........
_________________
Mommy to Camryn - 2 1/2 years old - dx'd with LC 8/08"
Your doctors will most likely say that diet has nothing to do with Microscopic Colitis (CC and LC), we know otherwise.
I found Tex, Dr. Polly (pediatrician) and the Potty People on a Friday and by Monday I was gluten free........
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Gluten Primer
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome Hmarie,
So sorry to hear your little girl has been diagnosed with CC.
This will be challenging -- but it is conquerable -- so keep the faith!
As you have GOOD medicine at UI in Iowa City, I’m not sure exactly what other direction I would like to take.
NO ONE knows what the cause of CC is. But at some centers they may be looking at pilot programs and studies -- so worth asking or looking for.
You might try to communicate with this Physician at:
http://www.mngastro.com/mngi.nsf/our_pr ... fford.html
He is in St Paul, Minnesota so depending on your location relative to Iowa City, he may be fairly accessible to you. You will see he is orignally from Medical School in Iowa City --- so he speaks your language, which is very important.
NO ONE knows what the cause of CC is. But at some centers they may be looking at pilot programs and studies -- so well worth asking.
Do also contact this gal on the Microscopic Colitis chat that has another affected little girl. I would bet that she will be most helpful for you to chat with.
BEST,
Gayle
So sorry to hear your little girl has been diagnosed with CC.
This will be challenging -- but it is conquerable -- so keep the faith!
As you have GOOD medicine at UI in Iowa City, I’m not sure exactly what other direction I would like to take.
NO ONE knows what the cause of CC is. But at some centers they may be looking at pilot programs and studies -- so worth asking or looking for.
You might try to communicate with this Physician at:
http://www.mngastro.com/mngi.nsf/our_pr ... fford.html
He is in St Paul, Minnesota so depending on your location relative to Iowa City, he may be fairly accessible to you. You will see he is orignally from Medical School in Iowa City --- so he speaks your language, which is very important.
NO ONE knows what the cause of CC is. But at some centers they may be looking at pilot programs and studies -- so well worth asking.
Do also contact this gal on the Microscopic Colitis chat that has another affected little girl. I would bet that she will be most helpful for you to chat with.
BEST,
Gayle
Thank you all very much for such a quick response. As you guys have mentioned the gluten free diet, and how the doctors wouldn't agree. Yes her doctors have said this, and since she only weights 16 lbs the do not want to mess with her diet at the moment. They said that it would interfere with her medication. I've mentioned it to them and they were adamant on not changing it, so at the moment we are not changing it and going to see if the meds will take effect. We are still looking for other people that have experienced this same thing with their child, and the treatment other than diet change that has been tried.
thanks so much
Hanna
thanks so much
Hanna
Hi Hanna,
I appreciate your faith in your doctors, and I realize that it's hard to accept that your doctors might not be acting in your child's best interest, but they do not understand this disease, and their hard-headedness results in their patients needlessly suffering. If most of us here, had faithfully stuck with our doctors advice, we would still be virtually chained to our bathroom, instead of doing what we want to do, every day.
I'm guessing that you didn't read any of the posts that I suggested.
Please read at least the first 3 or 4 pages of the following thread - it is very educational.
http://www.perskyfarms.com/phpBB2/viewt ... ght=#51409
One of our members is a pediatrician, and if she happens to log on and read this thread, I'm sure that she will point out that the reason your daughter is so small, is because she is sensitive to gluten, and if it is not removed from her diet in time, (along with casein), she will always be small. Treating this disease with drugs, in a child that young, is very risky business, (as I'm sure you are aware). There are no drugs available, that will actually treat CC, all they can do is to mask the symptoms, by suppressing the inflammation. A few weeks, (or less), after you stop using the drugs, the inflammation will return, and so will the symptoms.
Diet is the safest, and the most effective way to treat CC, (especially in a child), since it will actually prevent the inflammation from occurring, in the first place. Because of the long-term risk of permanent physical and neurological damage, (gluten crosses the blood/brain barrier), we hope that you will not wait too long, before trying the diet. In the meantime, we'll pray that your daughter doesn't experience any permanent damage.
Incidentally, I believe that your doctors lied to you, when they told you that the GF diet would interfere with the medication. What medication is she taking? I'm not aware of any medication that is adversely affected by the GF diet. They are feeding you a line of BS. Shame on them.
Tex
I appreciate your faith in your doctors, and I realize that it's hard to accept that your doctors might not be acting in your child's best interest, but they do not understand this disease, and their hard-headedness results in their patients needlessly suffering. If most of us here, had faithfully stuck with our doctors advice, we would still be virtually chained to our bathroom, instead of doing what we want to do, every day.
I'm guessing that you didn't read any of the posts that I suggested.
Please read at least the first 3 or 4 pages of the following thread - it is very educational.
http://www.perskyfarms.com/phpBB2/viewt ... ght=#51409
One of our members is a pediatrician, and if she happens to log on and read this thread, I'm sure that she will point out that the reason your daughter is so small, is because she is sensitive to gluten, and if it is not removed from her diet in time, (along with casein), she will always be small. Treating this disease with drugs, in a child that young, is very risky business, (as I'm sure you are aware). There are no drugs available, that will actually treat CC, all they can do is to mask the symptoms, by suppressing the inflammation. A few weeks, (or less), after you stop using the drugs, the inflammation will return, and so will the symptoms.
Diet is the safest, and the most effective way to treat CC, (especially in a child), since it will actually prevent the inflammation from occurring, in the first place. Because of the long-term risk of permanent physical and neurological damage, (gluten crosses the blood/brain barrier), we hope that you will not wait too long, before trying the diet. In the meantime, we'll pray that your daughter doesn't experience any permanent damage.
Incidentally, I believe that your doctors lied to you, when they told you that the GF diet would interfere with the medication. What medication is she taking? I'm not aware of any medication that is adversely affected by the GF diet. They are feeding you a line of BS. Shame on them.
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.
Welcome Hmarie,
I'm glad you found us, but sorry that your daughter is struggling with this issue.
I am a Registered Dietitian and I agree with Tex. I am having a hard time understanding how gluten could affect medication. In fact, I am surprised they aren't trying more dietary modifications. Diet certainly does affect diarrhea. The vast majority of us have seen improvement when we went gluten free. There are so many gluten free options for children and it in no way will compromise her nutritional status further. Gluten is not a vital nutrient. If her dotors were on the right track with treatment she wouldn't be losing weight and the diarrhea would have subsided. They are simply unaware because this information hasn't been published yet. We live with this diease everyday and they do not, so we are strongly encouraging you to simply give the diet a try. Drugs have far more side effects than diet changes.
If you would like some more "proof" that your daughter could be sensitive to gluten you may want to send a stool sample to Enterolab. Dr. Ken Fine is a gastroenterologist with MC and he started a lab to test stool for antibodies. If the test comes back positive then you will know it is the best way to go. Many of us have used the lab and firmly believe it is very accurate. www.enterolab.com
Wishing your daughter a speedy recovery,
Mary Beth
I'm glad you found us, but sorry that your daughter is struggling with this issue.
I am a Registered Dietitian and I agree with Tex. I am having a hard time understanding how gluten could affect medication. In fact, I am surprised they aren't trying more dietary modifications. Diet certainly does affect diarrhea. The vast majority of us have seen improvement when we went gluten free. There are so many gluten free options for children and it in no way will compromise her nutritional status further. Gluten is not a vital nutrient. If her dotors were on the right track with treatment she wouldn't be losing weight and the diarrhea would have subsided. They are simply unaware because this information hasn't been published yet. We live with this diease everyday and they do not, so we are strongly encouraging you to simply give the diet a try. Drugs have far more side effects than diet changes.
If you would like some more "proof" that your daughter could be sensitive to gluten you may want to send a stool sample to Enterolab. Dr. Ken Fine is a gastroenterologist with MC and he started a lab to test stool for antibodies. If the test comes back positive then you will know it is the best way to go. Many of us have used the lab and firmly believe it is very accurate. www.enterolab.com
Wishing your daughter a speedy recovery,
Mary Beth
Our EnteroLab Gene test results
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
Also, http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
Also, http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
. We are all here for you and your daughter.Hi HMarie! So sorry your daughter has been diagnosed, but I am SO glad you found this site!!
I just want to second what the others have said. A bit of background on me: I am the one in our family that we KNOW has colitis & many food sensitivities. I have two children, one age 3; the other 5 months. When I went gluten-free (later soy-free, and now dairy-free), we decided my son should come along. He was around one and hadn't had much wheat yet, anyway. He'd had some diarrhea and other GI situations that seemed to arise only with wheat. I knew already that gluten wasn't a great ingredient for most of us to eat anyway, and so we put my son on it.
My husband is an MD who has seen how well the diet has worked for ME (not to say I don't have glitches with my other GI condition, but overall, it has worked FAR better than all of the meds I have tried). My husband, who ended up very disappointed with our conventional GI experience, would be the first to tell you to TRY DIET FIRST. If meds are needed at the future, you can turn to them. But diet is 'no side effect' treatment. Sadly, GI docs mostly do NOT get this dietary connection. As my husband says, they spend about 1-2 DAYS on nutrition in their FOUR years of medical school.
I just want you to know that GF can be done in young kids; there are so many wonderful food substitutions (some much better than the gluten-containing variety). It will take some dedication and some effort, but it will be very worth it. My son (now 3) still doesn't eat gluten, and doesn't go without all of the conventional foods and treats that are typical for children. We'll be testing my son soon (Enterolab), but even if he is NOT gluten-sensitive, he'll likely stay on my diet...as will our future children. My husband only eats gluten when he's at work, or we're out. We don't have it at home.
Good luck to you. Give diet a try :) This is a great group filled with helpful, kind people!
I just want to second what the others have said. A bit of background on me: I am the one in our family that we KNOW has colitis & many food sensitivities. I have two children, one age 3; the other 5 months. When I went gluten-free (later soy-free, and now dairy-free), we decided my son should come along. He was around one and hadn't had much wheat yet, anyway. He'd had some diarrhea and other GI situations that seemed to arise only with wheat. I knew already that gluten wasn't a great ingredient for most of us to eat anyway, and so we put my son on it.
My husband is an MD who has seen how well the diet has worked for ME (not to say I don't have glitches with my other GI condition, but overall, it has worked FAR better than all of the meds I have tried). My husband, who ended up very disappointed with our conventional GI experience, would be the first to tell you to TRY DIET FIRST. If meds are needed at the future, you can turn to them. But diet is 'no side effect' treatment. Sadly, GI docs mostly do NOT get this dietary connection. As my husband says, they spend about 1-2 DAYS on nutrition in their FOUR years of medical school.
I just want you to know that GF can be done in young kids; there are so many wonderful food substitutions (some much better than the gluten-containing variety). It will take some dedication and some effort, but it will be very worth it. My son (now 3) still doesn't eat gluten, and doesn't go without all of the conventional foods and treats that are typical for children. We'll be testing my son soon (Enterolab), but even if he is NOT gluten-sensitive, he'll likely stay on my diet...as will our future children. My husband only eats gluten when he's at work, or we're out. We don't have it at home.
Good luck to you. Give diet a try :) This is a great group filled with helpful, kind people!
Kimberley
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
MC diagnosed 2004
Suspected Eosinophilic Gastroenteritis...??
Meds/Supplements: Probiotics, Prenatal Vitamins, Vitamin D3.
