Hello-
I am a new member and here on behalf of my 8-year-old daughter, Natalie. She was diagnosed 1.5 years ago with Lymphocytic Colitis after suffering with chronic diarrhea since age of 4. This diagnosis was the result of biopsies taken during and endoscopy and colonoscopy. She started out on sulfasalazine but began breaking out in hives so we switched to mesalamine. 6 months into treatment her diarrhea continued but was only once per day which was a huge improvement, however she started complaining of severe joint pain in her lower legs and wrists. We did a rheumatology work up and found a high ANA but nothing else that would indicate a specific diagnosis outside of LC. Quite accidentally, she was switched to Apriso for insurance reasons and the new drug relieved the joint pain. Now that we are 1.5 years into this, we have loose to normal stools once per day and reduced joint paint. Not bad! Any time a dose of meds is accidentally missed, her joint pain returns for a couple days, but her stools seem consistent. She is on a strict gluten free diet and uses lactaid with dairy. Additionally, she takes daily vitamin D to avoid the hive outbreaks that she was experiencing.
Her gastro didn't mention the joint pain at the time of diagnosis, but now believes that it is related to her LC. She says it is hard to know if the LC associated joint pain is real since LC normally happens in women ages 55-70 who might already be experiencing joint pain due to age. I think the fact that pediatric cases are showing the joint pain, it will further validate the joint pain across all age groups with LC.
Because LC is rare in children, we are at a loss in finding other kids/families who are navigating the disease. Are there any other pediatric cases in this forum?
Many thanks,
Rebecca (Natalie's Mom)
Pediatric LC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
Nataliesmom
- Posts: 3
- Joined: Tue Nov 07, 2017 11:07 am
- Location: Bay Area, CA
Pediatric LC
Natalie's Mom
Welcome Rebecca,
Sorry that your daughter has to experience this at such a young age, but from what I have learned here it isn't uncommon, which is sad.
That being said the joint pain to me is most definitely from the LC and that Natalie needs more support from Elemental Magnesium (and make sure her VitD3 levels are in a good place 50-80) now that she is on the medicine path. She has a pretty great outcome to healing, along with a diet that needs to change in order for her to maintain that outcome.
Now that I have been gluten free for 2 years I can get joint pain rather quickly and it stays with me for longer than I'd like if I stray from my diet and happen to go out to eat and get some gluten hidden in something, and dairy will give me body aches as well but only for a few days.
I believe I have been a sensitive gut person from a very young age, and picky eater too...I think stress may have been my trigger at the age of 40, and I didn't learn how to heal myself until I was almost 48....so I am happy you are here!
I believe there are a few cases here on this forum, Tex or Gabes may be able to locate them, or they may chime in.
Ask anything!
Cheers
Erica
Sorry that your daughter has to experience this at such a young age, but from what I have learned here it isn't uncommon, which is sad.
That being said the joint pain to me is most definitely from the LC and that Natalie needs more support from Elemental Magnesium (and make sure her VitD3 levels are in a good place 50-80) now that she is on the medicine path. She has a pretty great outcome to healing, along with a diet that needs to change in order for her to maintain that outcome.
Now that I have been gluten free for 2 years I can get joint pain rather quickly and it stays with me for longer than I'd like if I stray from my diet and happen to go out to eat and get some gluten hidden in something, and dairy will give me body aches as well but only for a few days.
I believe I have been a sensitive gut person from a very young age, and picky eater too...I think stress may have been my trigger at the age of 40, and I didn't learn how to heal myself until I was almost 48....so I am happy you are here!
I believe there are a few cases here on this forum, Tex or Gabes may be able to locate them, or they may chime in.
Ask anything!
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Hi Natalie's Mom,
Welcome!
I'm sure Tex will chime in soon. I was age 50 when diagnosed. In my 40's I had joint pain. Once I went in remission from MC ALL OF MY JOINT PAIN WENT AWAY.
Consider going dairy free in addition to GF. Most of us are sensitive to the casein in dairy. Lactaid will not help us if we are sensitive to casein which most of us are per the Enterolab testing. Most of use something like almond milk or one of the other replacement nut milks that do not have casein since they are from a nut.
Also most of us do better eating "real foods" i.e. eating nothing with an ingredient list on it. Avoid all raw foods until she is in remission.
Once she is remission I think you will find that her joint pain disappears.
She has youth on her side....due to her youth she should go into remission much faster than middle aged folks.
As a reference I was on a prescription drug for 4.5 months (Entocort) and concurrently went GF, and DF. I've been able to be drug free for the last 6 years. The prescription drugs don't heal us. It takes eating the anti inflammatory diet (GF and DF) to go into remission. The prescription drugs help with the symptoms until the diet kicks in.
Also--be aware that joint pain can also be a side effect of prescription drugs for MC. My joint pain was worse on Entocort and did not get better until I got off of it.
Now if I eat a piece of cheese or too much sugar I get extreme joint pain so I avoid both.
Tex has a book that is linked in the upper right hand corner. It is very helpful and worth the money. It is the only book written on MC. Also sign up for our newsletter link on the Foundation website to stay current on the latest developments in our disease.
Also--consider the Enterolab tests. I think most of us find them worth the money to help us go into remission.
Brandy
Welcome!
I'm sure Tex will chime in soon. I was age 50 when diagnosed. In my 40's I had joint pain. Once I went in remission from MC ALL OF MY JOINT PAIN WENT AWAY.
Consider going dairy free in addition to GF. Most of us are sensitive to the casein in dairy. Lactaid will not help us if we are sensitive to casein which most of us are per the Enterolab testing. Most of use something like almond milk or one of the other replacement nut milks that do not have casein since they are from a nut.
Also most of us do better eating "real foods" i.e. eating nothing with an ingredient list on it. Avoid all raw foods until she is in remission.
Once she is remission I think you will find that her joint pain disappears.
She has youth on her side....due to her youth she should go into remission much faster than middle aged folks.
As a reference I was on a prescription drug for 4.5 months (Entocort) and concurrently went GF, and DF. I've been able to be drug free for the last 6 years. The prescription drugs don't heal us. It takes eating the anti inflammatory diet (GF and DF) to go into remission. The prescription drugs help with the symptoms until the diet kicks in.
Also--be aware that joint pain can also be a side effect of prescription drugs for MC. My joint pain was worse on Entocort and did not get better until I got off of it.
Now if I eat a piece of cheese or too much sugar I get extreme joint pain so I avoid both.
Tex has a book that is linked in the upper right hand corner. It is very helpful and worth the money. It is the only book written on MC. Also sign up for our newsletter link on the Foundation website to stay current on the latest developments in our disease.
Also--consider the Enterolab tests. I think most of us find them worth the money to help us go into remission.
Brandy
Hi Rebecca,
Welcome to our Internet family. It sounds as though you already have a lot of experience dealing with this.
Her arthritis symptoms, and her continuing diarrhea almost surely are due to something in her diet. 17 years ago I had to use a cane to be able to get around, but after correcting my diet, I have no signs of arthritic pain today. She might have a sensitivity to some "undiscovered" food sensitivity in her diet, but considering the apparent seriousness of her pain, I'm guessing that either she is sensitive to casein (which means she is sensitive to all dairy) or her diet might be getting cross-contaminated with gluten. Is there any wheat flour in the house?
Lactaid does not help most of us significantly — we are also sensitive to casein. Dairy products tend to cause osteoarthritis, which seems slower to stop and start than the rheumatoid arthritis-like symptoms caused by gluten. I know because I get no digestive symptoms from dairy, but it causes osteoarthritis to develop, and it eventually becomes debilitating. An EnteroLab stool test shows that my immune system produces antibodies against casein, so I have to avoid casein.
She shouldn't need the Apriso or any other drug if her diet were free of any food sensitivities.
For another pediatric case to review, please read these threads:
My 2 Year Old was just diagnosed with LC :(
Camryn's Enterolab Results are in!
Hi everyone - Update on Camryn and Me
Hi everyone, it's been a while - Update on Camryn
Happy Birthday Camryn (Camryn'sMommy)
Camryn's mother doesn't post regularly, but I feel sure if you would email her, she would be happy to share her experiences about LC.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. It sounds as though you already have a lot of experience dealing with this.
Her arthritis symptoms, and her continuing diarrhea almost surely are due to something in her diet. 17 years ago I had to use a cane to be able to get around, but after correcting my diet, I have no signs of arthritic pain today. She might have a sensitivity to some "undiscovered" food sensitivity in her diet, but considering the apparent seriousness of her pain, I'm guessing that either she is sensitive to casein (which means she is sensitive to all dairy) or her diet might be getting cross-contaminated with gluten. Is there any wheat flour in the house?
Lactaid does not help most of us significantly — we are also sensitive to casein. Dairy products tend to cause osteoarthritis, which seems slower to stop and start than the rheumatoid arthritis-like symptoms caused by gluten. I know because I get no digestive symptoms from dairy, but it causes osteoarthritis to develop, and it eventually becomes debilitating. An EnteroLab stool test shows that my immune system produces antibodies against casein, so I have to avoid casein.
She shouldn't need the Apriso or any other drug if her diet were free of any food sensitivities.
For another pediatric case to review, please read these threads:
My 2 Year Old was just diagnosed with LC :(
Camryn's Enterolab Results are in!
Hi everyone - Update on Camryn and Me
Hi everyone, it's been a while - Update on Camryn
Happy Birthday Camryn (Camryn'sMommy)
Camryn's mother doesn't post regularly, but I feel sure if you would email her, she would be happy to share her experiences about LC.
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.
-
Nataliesmom
- Posts: 3
- Joined: Tue Nov 07, 2017 11:07 am
- Location: Bay Area, CA
Hi all-
Thanks so much for the responses! Communities dealing with the same struggle are always more helpful than quick doc appointments. We are lucky to have an incredible pediatric gastro who is constantly trying to stay on the cutting edge of LC.
We maintain a GF house, so I do not think there is much chance for cross-contamination except for playdates and restaurants. We are a whole foods focused family and make most things home made. Natalie suffered through an elimination diet which proved not to be very enlightening since she had no additional physical complaints or revelations. She does have a raging allergy to green beans. We have done a number of food sensitivity tests and none show her gluten allergy, but we are confident that she has one. Frankly, she avoids gluten on her own, so I know she is aware of the negative effect. We have tried to go completely dairy free, but have found that to be a tough one for her to adhere to at the age of 8. Unfortunately, she is feeling victimized and "unfairly treated" by the universe right now because of her frequent doc appointments and diet restrictions which her friends don't have to deal with. She was at doc appts every day last week with three different doctors. It is a lot for a young girl. Any time I have to add a pill to her daily regimen she gets angry, even if it is only for a week's time. We just tried to teach her to wipe for herself, but ended up with three serious UTIs in two-months time.
Right now, we are confident that she needs the gluten free diet, the daily vitamin D (to avoid hive outbreaks), daily Apriso, and avoidance of lactose (shown in endoscopy biopsy). We are also dealing with many doctors, many of whom disagree with Natalie's gf diet and are quite hard on me for having her eat gf. Right now, her docs don't see her off of meds anytime soon even with her stools close to normal. Her Calprotectin has been stable for a year and most of her bloodwork remains normal except for her ANA.
I am off to research magnesium supplementation, casein-free diets and to read the threads you recommended.
Many thanks!
Rebecca
Thanks so much for the responses! Communities dealing with the same struggle are always more helpful than quick doc appointments. We are lucky to have an incredible pediatric gastro who is constantly trying to stay on the cutting edge of LC.
We maintain a GF house, so I do not think there is much chance for cross-contamination except for playdates and restaurants. We are a whole foods focused family and make most things home made. Natalie suffered through an elimination diet which proved not to be very enlightening since she had no additional physical complaints or revelations. She does have a raging allergy to green beans. We have done a number of food sensitivity tests and none show her gluten allergy, but we are confident that she has one. Frankly, she avoids gluten on her own, so I know she is aware of the negative effect. We have tried to go completely dairy free, but have found that to be a tough one for her to adhere to at the age of 8. Unfortunately, she is feeling victimized and "unfairly treated" by the universe right now because of her frequent doc appointments and diet restrictions which her friends don't have to deal with. She was at doc appts every day last week with three different doctors. It is a lot for a young girl. Any time I have to add a pill to her daily regimen she gets angry, even if it is only for a week's time. We just tried to teach her to wipe for herself, but ended up with three serious UTIs in two-months time.
Right now, we are confident that she needs the gluten free diet, the daily vitamin D (to avoid hive outbreaks), daily Apriso, and avoidance of lactose (shown in endoscopy biopsy). We are also dealing with many doctors, many of whom disagree with Natalie's gf diet and are quite hard on me for having her eat gf. Right now, her docs don't see her off of meds anytime soon even with her stools close to normal. Her Calprotectin has been stable for a year and most of her bloodwork remains normal except for her ANA.
I am off to research magnesium supplementation, casein-free diets and to read the threads you recommended.
Many thanks!
Rebecca
Natalie's Mom
The only lab in the world that is capable of accurately and reliably (repeatedly) detecting food sensitivities is EnterLab in Dallas, Texas. They use stool tests that detect IgA antibodies. The blood tests that everybody else uses all check for IgE and IgG antibodies. All of the blood tests are useless for detecting food sensitivities.
If she's allergic to green beans (a legume) she's probably sensitive to soy and all it's derivatives. Most of us are.
You're very welcome.
Tex
If she's allergic to green beans (a legume) she's probably sensitive to soy and all it's derivatives. Most of us are.
You're very welcome.
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.