My 2 1/2 YO daughter recently diagnosed w/collagenouscolitis

tiffany922 · Post by **tiffany922** » Fri Mar 31, 2017 12:40 pm

Hi everyone, I joined the message board in hopes of getting more information for my daughter. She's 2 1/2 and has recently been diagnosed with collagenous colitis. She's had "Chronic diarrhea" her entire life and after a recent terrible bout we went to the children's hospital where after numerous tests, colonoscopy and endoscopy, she was diagnosed with microscopic collegenous colitis. Obviously this condition is extremely rare in children so we are struggling to find information on it relating to kids.

I have questions about this condition as neither myself or my husband have much familiarity with colitis.
-Our GI doctor said we didn't have to change her diet to a gluten free one but we've been tossing around the idea of going GF just for the sake of it. Does anyone have any personal experiences with this as well? Not necessarily doctor recommended but you found yourself maintaining better by going GF?
-In some of the research I've done I've read about staying away from ibuprofen. Since she's a kid and gets random fevers should we continue treating just with tylenol only?
-Any other suggestions or helpful tips?

Thank you in advance for your replies. I hope to learn as much as I can to make this as easy as I can for my daughter.

Gabes-Apg · Post by **Gabes-Apg** » Fri Mar 31, 2017 2:53 pm

hello Tiffany
welcome to our family (we are like a family here) and sympathies for what you daughter has been experiencing and that you had to find us.

to answer your questions
Q1 - sadly your GI doctor is naive about benefits of diet changes and how it can help collegenous colitis (CC) GF is a fantastic start and majority of people here (all ages children, teenagers, young adults etc) see fantastic benefits from doing so

Q2 - definately avoid NSAIDS, it is a major trigger for CC

Q3 - we have a guidelines for recovery that has key information about suggested eating plan that will reduce inflammation and encourage the gut to heal, and other key information there
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79

also some other discussion areas where you can read the posts about the benefits of diet changes - and why it is worthy of serious consideration.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22857
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71

hope these answers and links help. what you read here may be overwhelming at first but take your time to digest (pun intended) the info and suggestions and feel free to ask questions.

I am very confident that with the right eating plan changes and key supplement support (like Vit D3 and magnesium) with your daughters young age she can heal and achieve a settled remission status.

Gabes-Apg · Post by **Gabes-Apg** » Fri Mar 31, 2017 3:56 pm

Tiffany
I meant to share these discussions with you, another young member who was diagnosed at age 2 1/2.

you might be interested in reading these posts. they are from a few years ago and we have learnt a bit more about Vit D and magnesium since then but it will help you see what others have done in same situation as yours

http://www.perskyfarms.com/phpBB2/viewt ... highlight=
http://www.perskyfarms.com/phpBB2/viewt ... highlight=
http://www.perskyfarms.com/phpBB2/viewt ... highlight=

jessica329 · Post by **jessica329** » Sat Apr 01, 2017 9:25 pm

I was diagnosed in 2012 prior to having my son. My son turned 3 on Feb.3rd. Like your daughter, he always suffered from chronic yellow foul smelling diarrhea. This past September/October, it became very bad with 5-8 liquid mucous bouts a day. We tried the GI's recommendations to no avail (limiting fruits and eliminating foods with fructose such as apple sauce) and he tested negative for several celiac tests. I did not want to put him under for a colonoscopy, and we suspected MC anyways, so we eliminated gluten on Halloween. His bowel movements slowly improved and by week 2, he had completely solid normal brown poops. I am able to control my MC by eliminating gluten, dairy and limiting sugar, and that is why my husband and I decided to try eliminating gluten for our son. I am surprised that the GI did not tell you to remove gluten, as it is now recommended for treatment from many well-known medical establishments. In January, we started him on Honest Company Baby and Toddler Multi Powder (vitamin/probiotic). This has also made a big difference for him.

To answer your other questions, we only give him Tylenol, and only when he has a high fever. I would also suggest limiting or eliminating dairy. He has never had milk (it tears through his system). He'll eat cheese on occasion. Our pediatrician said that he doesn't need milk past age 2. Feel free to ask me any other questions :-)

brandy · Post by **brandy** » Sat Apr 01, 2017 9:41 pm

Hi Tiffany,

Welcome to the forum!

I see you are from Minnesota. Mayo Clinic website recommends those with CC and MC go gluten free and dairy free. http://www.mayoclinic.org/diseases-cond ... c-20192519

Those with MC should use tylenol only. NSAIDs cannot be used with MC.

If you have not picked up a copy of Tex's book it is a great resource. The link is in the upper right of the forum.

Brandy