Hi. I am so happy to have found a discussion board devoted to microscopic colitis. My five year old daughter, Adelyn was diagnosed with lymphocyctic colitis two years ago. As an infant she had colic and was extremely gassy and cranky. At age two we noticed that she was having loose stools several times a day and she would wake up screaming and crying at night and was inconsolable. We spent over a year having numerous tests done. She was tested for lactose, sucrose and glucose intolerance. Her pediatrician took blood for the celiac test and then had us try a gluten free diet while we were waiting for the results. After two days we saw an amazing difference with her BMs and thought for sure that she would be diagnosed with Celiac. However, the test came back negative so her pediatrician referred us to a gastroentrologist. Of course we had to wait three months to get in so we kept her on the gf diet as she was showing improvement. When we saw the gastroentrologist and he reviewed the testing, he said that the pediatrician hadn't ordered all the components of the test so we had to start giving her gluten again for two months so that the test could be redone. At first she still was doing pretty good, but then the diarrhea came back. Again, we thought she definitely had celiac, but the test came back neg. again. After a bunch more blood work and allergy testing, she had a colonoscopy and endoscopy at age 3. That's when we found out that she has lymphocyctic colitis.
Currently she is taking sulfasalazine and she is on a gf diet. She was drinking soy milk, but still often complained of stomach pain, even though her BMs were normal. So now she drinks almond milk, but she still has cheese and ice cream and products that have milk and soy as ingredients. Her BMs are usually normal now, but she still complains of stomach pains at times. Now I am wondering if I need to cut out all products with milk and soy in them, although that is like everything! She was doing pretty well with the diet and we we hoping to try to discontinue the meds since she is so young and has been on them a while. However two weeks ago she had rotavirus and had to be hospitalized for four days due to severe dehydration so now the doctor wants to wait another six months. Overall she is doing so much better than a couple of years ago, but when she has a cold or virus then it takes her a while to get stable again. We are very strict with the gf diet and I know that it helps her tremendously, but it is hard at her age at school and when she goes to friends. I pack everything for her and thank god she is really good about it, but I feel so bad when she can't have the treats that everyone else has. I am hoping that gf foods continue to become more common as people are becoming increasing aware of celiac disease, but I wish that there was more awareness of microscopic colitis as well!
Hello
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jessica,
Welcome to our internet family. You are doing a great job of caring for your daughter - a much better job than her doctors seem able to do. I never cease to be amazed at how cruel they can be, in requiring gluten challenges, simply because their testing and diagnostic techniques are obsolete.
Yes, there's a very good chance that either dairy or soy, (or both), could be causing your daughter's continued issues, and there is a very good chance that once her diet is fine tuned, and devoid of any sensitivities, she will no longer need the meds, because kids heal very quickly, compared to us older folks.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
P. S. You might find this old thread interesting, if you haven't already read it. Camryn responded very well to her diet changes, and never had to take any meds to treat the disease.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8274
Welcome to our internet family. You are doing a great job of caring for your daughter - a much better job than her doctors seem able to do. I never cease to be amazed at how cruel they can be, in requiring gluten challenges, simply because their testing and diagnostic techniques are obsolete.
Yes, there's a very good chance that either dairy or soy, (or both), could be causing your daughter's continued issues, and there is a very good chance that once her diet is fine tuned, and devoid of any sensitivities, she will no longer need the meds, because kids heal very quickly, compared to us older folks.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
P. S. You might find this old thread interesting, if you haven't already read it. Camryn responded very well to her diet changes, and never had to take any meds to treat the disease.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8274
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 to the board, Jessica!! 
It always breaks my heart to read that small children have to deal with this disease. You have discovered on your own that a gluten-free diet has helped Adelyn. Good for you!
We generally find that if we have problems with a food, we need to eliminate it completely. I would guess that Adelyn needs to be completely off dairy and soy. There are many ice "cream" products which don't contain any dairy. I have a carton of coconut ice "cream" in my freezer, and it is very tasty. Many of us drink alternative milks, such as almond, rice or coconut milk, and a few of us make our own from almond nuts and rice. You can find many delicious recipes in Dee's kitchen, located here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
You might be interested in reading about another little girl whose mom posted here when she was just 2 years old. Camryn must be about 5 years old now. I'm sure if you sent a private message to her mom, she'd be happy to communicate with you.
Here are some of the threads on Camryn:
http://www.perskyfarms.com/phpBB2/profi ... file&u=262
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8540
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8503
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8915
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9413
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9636
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11077
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11357
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12415
We are here to help you - please don't hesitate to express your worries and concerns.
Gloria
It always breaks my heart to read that small children have to deal with this disease. You have discovered on your own that a gluten-free diet has helped Adelyn. Good for you!
We generally find that if we have problems with a food, we need to eliminate it completely. I would guess that Adelyn needs to be completely off dairy and soy. There are many ice "cream" products which don't contain any dairy. I have a carton of coconut ice "cream" in my freezer, and it is very tasty. Many of us drink alternative milks, such as almond, rice or coconut milk, and a few of us make our own from almond nuts and rice. You can find many delicious recipes in Dee's kitchen, located here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
You might be interested in reading about another little girl whose mom posted here when she was just 2 years old. Camryn must be about 5 years old now. I'm sure if you sent a private message to her mom, she'd be happy to communicate with you.
Here are some of the threads on Camryn:
http://www.perskyfarms.com/phpBB2/profi ... file&u=262
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8540
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8503
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=8915
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9413
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9636
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11077
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11357
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12415
We are here to help you - please don't hesitate to express your worries and concerns.
Gloria
You never know what you can do until you have to do it.
Jessica,
Glad you found us - this is your best resource for dealing with MC.
I agree with Tex - I get so angry with doctors who know a GF diet is working and subject someone to a gluten challenge, only to arrive at the same place . . . the need for a GF diet. It makes absolutely no sense.
My son isn't as young as your daughter but he went gluten, dairy and corn free when he was 8. It gets easier over time. You just need to always be prepared to supply your own food at parties etc. I have to say our school hasn't been very helpful but I know that some other schools do a much better job with kids on special diets. When your daughter is a little older you could send her to a camp for kids on gluten free diets. My son went last year and loved it - going again this year. It helps to know other kids in the same situation.
Hopefully Adelyn will respond well to a change in diet. We use coconut milk beverage as a milk substitute and it works great - it tastes really good. There is a good fake cheese made by Daiya and it actually melts like cheese. There is a non-invasive test you could do called Enterolab (checks stool) to find out what else she might be sensitive to. Many of us have done it and found it to be very accurate.
Don't hesitate to ask any questions - we are here to help.
Mary Beth
Glad you found us - this is your best resource for dealing with MC.
I agree with Tex - I get so angry with doctors who know a GF diet is working and subject someone to a gluten challenge, only to arrive at the same place . . . the need for a GF diet. It makes absolutely no sense.
My son isn't as young as your daughter but he went gluten, dairy and corn free when he was 8. It gets easier over time. You just need to always be prepared to supply your own food at parties etc. I have to say our school hasn't been very helpful but I know that some other schools do a much better job with kids on special diets. When your daughter is a little older you could send her to a camp for kids on gluten free diets. My son went last year and loved it - going again this year. It helps to know other kids in the same situation.
Hopefully Adelyn will respond well to a change in diet. We use coconut milk beverage as a milk substitute and it works great - it tastes really good. There is a good fake cheese made by Daiya and it actually melts like cheese. There is a non-invasive test you could do called Enterolab (checks stool) to find out what else she might be sensitive to. Many of us have done it and found it to be very accurate.
Don't hesitate to ask any questions - we are here to help.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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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
things can be a bit overwhelming regarding life with MC at first, with time it gets easier.
when you confirm the allowed foods and best to avoid type foods you will be able to adjust meals and recipes.
I follow a Gluten, Yeast, Dairy and Soy Free diet and on the weekend i made chocolate muffins with white chocolate drizzle.
there is lots of valuable information on this site and a wonderful bunch of people who are more than willing to help and answer any questions. Quite a few people have done the 'hard yards' and will share information that can make it a bit easier.
take care, good luck 'digesting' all the information
things can be a bit overwhelming regarding life with MC at first, with time it gets easier.
when you confirm the allowed foods and best to avoid type foods you will be able to adjust meals and recipes.
I follow a Gluten, Yeast, Dairy and Soy Free diet and on the weekend i made chocolate muffins with white chocolate drizzle.
there is lots of valuable information on this site and a wonderful bunch of people who are more than willing to help and answer any questions. Quite a few people have done the 'hard yards' and will share information that can make it a bit easier.
take care, good luck 'digesting' all the information
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Jessica!
Your story breaks my heart - this is a tough disease for a baby and a mommy to bear! I have a 3 yr old and 6 yr old, and I worry for them a lot. In fact, I just ordered celiac gene testing from Enterolab for my 6 yr old just to see if celiac is a possibility. His BMs are generally normal and he has no pain, but he is sensitive to milk (gas) and isn't growing well. I have a celiac gene and LC, so I want to make sure I catch it as early as possible if it happens. My son LOVES So Delicious Coconut milk. He chooses it over all other beverages most of the time. At school he buys lunch and is allowed to get juice instead of milk. He also shuns most baked goods and pasta, so I wonder about gluten...but it's not a problem yet (I think).
My LC responded well to the GF/DF diet at first. Then things slipped a bit so I dropped soy and yeast for a while too (Enterolab testing showed I was sensitive to these too). Now I can have GF soy sauce, small amounts of soy lecithin and other soy additives without trouble, but I'll never drink soymilk or eat tofu again.
Have you done any other types of food allergy testing (skin prick, patches, etc)? Just wondering what other information would help. Did Adelyn get GI infections like rotavirus early on? Your story makes me wonder if a food sensitivity in infancy (gluten or dairy) or a virus or bacteria eventually led to the LC.
Please keep us posted on Adelyn's progress.
Your story breaks my heart - this is a tough disease for a baby and a mommy to bear! I have a 3 yr old and 6 yr old, and I worry for them a lot. In fact, I just ordered celiac gene testing from Enterolab for my 6 yr old just to see if celiac is a possibility. His BMs are generally normal and he has no pain, but he is sensitive to milk (gas) and isn't growing well. I have a celiac gene and LC, so I want to make sure I catch it as early as possible if it happens. My son LOVES So Delicious Coconut milk. He chooses it over all other beverages most of the time. At school he buys lunch and is allowed to get juice instead of milk. He also shuns most baked goods and pasta, so I wonder about gluten...but it's not a problem yet (I think).
My LC responded well to the GF/DF diet at first. Then things slipped a bit so I dropped soy and yeast for a while too (Enterolab testing showed I was sensitive to these too). Now I can have GF soy sauce, small amounts of soy lecithin and other soy additives without trouble, but I'll never drink soymilk or eat tofu again.
Have you done any other types of food allergy testing (skin prick, patches, etc)? Just wondering what other information would help. Did Adelyn get GI infections like rotavirus early on? Your story makes me wonder if a food sensitivity in infancy (gluten or dairy) or a virus or bacteria eventually led to the LC.
Please keep us posted on Adelyn's progress.
-
Adelyn'smom
- Posts: 5
- Joined: Fri Jul 30, 2010 8:04 pm
cause of LC
When I was in labor for Adelyn, I ended up getting a fever and infection and I had antibiotics while in labor, which made me extremely nauseated. When she was born her heart rate was abnormal and she had to go to the NICU for a few hours, but then was fine. They did blood work on me and was unsure what the infection was, but I've always wondered if that contributed to her LC since she seems to have always had these issues. I exclusively nursed her for the first six months and then gave her soy formula, but she was always very gassy and cranky. My three year old daughter has not had any problems.
Adelyn has had blood tests for allergies and did the breathing tests for lactose, glucose and sucrose and all of those were negative. I'm definitely going to look into the Enterolab testing. thanks for all the great advice and resources!
Adelyn has had blood tests for allergies and did the breathing tests for lactose, glucose and sucrose and all of those were negative. I'm definitely going to look into the Enterolab testing. thanks for all the great advice and resources!
Jessica
Jessica,
IMO, there's a very good possibility that your suspicions are on target. A baby born with antibiotics in her bloodstream would almost certainly have to suffer negative effects to her immune system. The initial inoculation of vital gut bacteria that become the basis for the establishment of our own personal population of intestinal bacteria, occurs during our trip down our mother's birth canal. Other developments occur soon after birth, but the first few weeks of life are the most important, as far as the establishment of the immune system is concerned. Depending on which antibiotic was used, and the dosage rate, it's certainly possible that the antibiotics which crossed the placenta might have circulated in her bloodstream long enough to effectively destroy, (or at least alter), that vital first inoculation of gut bacteria, thus altering the development of her immune system, forever.
I'm not a medical professional, so please don't consider my opinion to be gospel. Here's a reference on the placental transfer of antibiotics:
http://www.ncbi.nlm.nih.gov/pubmed/16502764
The reason why that initial inoculation of gut bacteria is so important, is because only bacteria that have actually been part of an established colony in the human gut, (such as in a mother's intestines), can become established in someone else's, (e.g. a newborn's), intestines. Our sole opportunity for that inoculation occurs during the birth process. Once that opportunity is past, we can take probiotics until we are blue in the face, but they will not establish permanent colonies in our intestines - they quickly die out, because they haven't been properly "programmed" to attach to the intestinal walls, so that they can develop a symbiotic relationship with the host.
Tex
IMO, there's a very good possibility that your suspicions are on target. A baby born with antibiotics in her bloodstream would almost certainly have to suffer negative effects to her immune system. The initial inoculation of vital gut bacteria that become the basis for the establishment of our own personal population of intestinal bacteria, occurs during our trip down our mother's birth canal. Other developments occur soon after birth, but the first few weeks of life are the most important, as far as the establishment of the immune system is concerned. Depending on which antibiotic was used, and the dosage rate, it's certainly possible that the antibiotics which crossed the placenta might have circulated in her bloodstream long enough to effectively destroy, (or at least alter), that vital first inoculation of gut bacteria, thus altering the development of her immune system, forever.
I'm not a medical professional, so please don't consider my opinion to be gospel. Here's a reference on the placental transfer of antibiotics:
http://www.ncbi.nlm.nih.gov/pubmed/16502764
The reason why that initial inoculation of gut bacteria is so important, is because only bacteria that have actually been part of an established colony in the human gut, (such as in a mother's intestines), can become established in someone else's, (e.g. a newborn's), intestines. Our sole opportunity for that inoculation occurs during the birth process. Once that opportunity is past, we can take probiotics until we are blue in the face, but they will not establish permanent colonies in our intestines - they quickly die out, because they haven't been properly "programmed" to attach to the intestinal walls, so that they can develop a symbiotic relationship with the host.
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.
Jessica,
I agree with Tex, but also want to add that there are a number of factors that could contribute to the triggering process at or near birth. First, you did not mention whether Adelyn was born vaginally or by c-section. C-sections bypass the necessary exposure to mom's bacteria in the birth canal, which means babies become colonized with other bacteria in the environment. I believe this is being linked to allergies, asthma and other issues. Second, antibiotics given to mom in labor (often for group B strep), reduce the number of bacteria in the birth canal, and can also contribute to yeast issues in mom and baby (which can make nursing difficult). Did Adelyn ever experience painful, stubborn, red diaper rash or thrush in her first year?
I am a believer in an infectious trigger of gluten sensitivity and LC. For me it started with a bad GI infection abroad, but took almost 9 years to fully develop. But you still need the genes to be predisposed, and usually other stressors (toxic chemicals in the environment and in food, mental stress, life events like pregnancy, etc). I nursed my kids religiously in hopes of preventing some of the allergy and asthma issues on their dad's side of the family. My son got 12 months, and my daughter got 3 years, but she's the one with insane pollen allergies and other sensitivities.
And now I'll open a can of worms -- vaccines. I delayed a number of vaccines for my kids and opted out entirely of Hep B for my daughter, because of it's link to autoimmunity. I had the Hep B series as a healthcare worker in college, them developed "IBS" not long after. I've read recently that delaying Hep B until a month or 2 after birth actually increases the chances of it triggering Type 1 diabetes. I'm not opposed to vaccines entirely, but I feel there needs to be a more cautious approach to the number and frequency they are given in the first 2 years of life. Babies with genetic predispositions to anything can be triggered by a vaccine.
After my LC diagnosis and given the presence of several autoimmune antibodies in by blood (suggesting RA, hepatitis or something else someday), my rheumatologist said ABSOLUTELY no vaccines ever again for me, because anything that acts on my immune system is a potential trigger.
All that said...
Please don't beat yourself up over things in the past that could have been done differently. Adelyn's present and future and in your hands now and you are headed down the right path to get her well again.
I agree with Tex, but also want to add that there are a number of factors that could contribute to the triggering process at or near birth. First, you did not mention whether Adelyn was born vaginally or by c-section. C-sections bypass the necessary exposure to mom's bacteria in the birth canal, which means babies become colonized with other bacteria in the environment. I believe this is being linked to allergies, asthma and other issues. Second, antibiotics given to mom in labor (often for group B strep), reduce the number of bacteria in the birth canal, and can also contribute to yeast issues in mom and baby (which can make nursing difficult). Did Adelyn ever experience painful, stubborn, red diaper rash or thrush in her first year?
I am a believer in an infectious trigger of gluten sensitivity and LC. For me it started with a bad GI infection abroad, but took almost 9 years to fully develop. But you still need the genes to be predisposed, and usually other stressors (toxic chemicals in the environment and in food, mental stress, life events like pregnancy, etc). I nursed my kids religiously in hopes of preventing some of the allergy and asthma issues on their dad's side of the family. My son got 12 months, and my daughter got 3 years, but she's the one with insane pollen allergies and other sensitivities.
And now I'll open a can of worms -- vaccines. I delayed a number of vaccines for my kids and opted out entirely of Hep B for my daughter, because of it's link to autoimmunity. I had the Hep B series as a healthcare worker in college, them developed "IBS" not long after. I've read recently that delaying Hep B until a month or 2 after birth actually increases the chances of it triggering Type 1 diabetes. I'm not opposed to vaccines entirely, but I feel there needs to be a more cautious approach to the number and frequency they are given in the first 2 years of life. Babies with genetic predispositions to anything can be triggered by a vaccine.
After my LC diagnosis and given the presence of several autoimmune antibodies in by blood (suggesting RA, hepatitis or something else someday), my rheumatologist said ABSOLUTELY no vaccines ever again for me, because anything that acts on my immune system is a potential trigger.
All that said...
Please don't beat yourself up over things in the past that could have been done differently. Adelyn's present and future and in your hands now and you are headed down the right path to get her well again.