Community Forum

My son was diagnosed at the age of 4 1/2 with UC and it has now progressed into Crohn's/Colitis at the age of 6.  It seems his body is more compatible with Crohn's and we are heading to that diagnosis sooner rather than later.  He has a very mild case and rarely complains of stomach pains and does not have the typical persistent diarrhea.  If he complains of his stomach hurting he is fine about an hours later and is running around and playing.  Never once has he had to not participate in an activity or not be able to go to school because of symptoms and he has always taken to the medicines he has been on beautifully.  Recently he did have a minor flair up and has been put on methotrexate injections for a few months.  So far, so good.
Over the past few months people who I talk to who learn of my son's condition suggest taking him off gluten.  Although none of his doctors have suggested that this could help him I am wondering if it would be worth it.  He is an extremely picky eater and often doesn't eat any dinner but he has never gotten a failure to thrive diagnosis from his doctor.  Just last year alone he gained 6 pounds and grew over 2 inches!  I hesitate to take anything out of his diet due to him not eating much to begin with.  Also, since he has very mild symptoms to begin with I am wondering if it would even make a difference. 
I just thought I would put the question of should I take him off gluten out there to see if any of you have done this either yourselves or with your children and what the result was.  Please help and thanks in advance!!

 Reply posted for jillmills22.

My daughter was diagnosed with UC at age 5, but I think she has had it much longer.  She was diagnosed with juvenile arthritis at 2 and has other health issues.  We tried removing gluten, dairy, soy and egg when she was diagnosed with juvenile arthritis but saw no visible improvement.  When she was diagnosed with UC, I had had enough.  Diagnosis after diagnosis.  My daughter was on many medications and still miserable... begging me to make it all stop.  I came to this forum and someone mentioned the Specific Carbohydrate Diet.  In May 2010, I started her (and me) on SCD and in May 2011, I added LDN to her treatment.  We're now at our three year anniversary on SCD and she's doing great.  No symptoms and her inflammatory markers (calprotectin and ESR/sed rate) are normal.  They were never normal while on Humira, Methotrexate, Prednisone, Enbrel, Sulfasalazine, Asacal, Pentasa, etc. 

You can try to remove gluten and see if it helps, but it may take a lot more investigative work to figure out what  may be a trigger for your son.  Don't give up if you try something and it doesn't seem to help.  

 Reply posted for jillmills22.

By the way--when you go to that Web site

http://health.usnews.com/top-doctors

be sure so type in pediatric gastroenterologist in the "specialist" window.

 Reply posted for jillmills22.

Unfortunately, there is no known dietary cause or remedy for Crohn's or colitis. Gluten is well established as a factor in Celiac disease, not Crohn's or colitis.

You should ask your physician to refer you to a nutritionist who specialized in inflammatory bowel disease to help you work out a dietary regimen. It will probably involve some trial and error, since no two people with IBD react the same way to the same foods.

You also might consider getting a second opinion on treatment from a top-flight medical authority in your area--preferably someone who teaches at a medical school and ranks near the top of the GI totem pole in your area. You can find someone of that stature by going to the following Web site:

http://health.usnews.com/top-doctors

Best of luck and God bless,

Bill

 Reply posted for jillmills22.

My daughter was very young too when she was diagnosed @ 4.   We did try going gluten and dairy free.   What I have learned over the years is everybody is different.   For Liz it didn't make a difference.  I hear you loud and clear with regard to not wanting to take foods out of his diet, especially when there seems to be so little that he eats.  I would think being that he is for the most part symptom free, keep doing what you are doing.   Just keep in the back of your mind in the event things aren't going so well that eliminating gluten is an option, as well as dairy.   One thing that has helped my daughter is eating smaller/more frequent meals with safe snacks inbetween.   She did go through quite some time when she did "fail to thrive".   It has been 9 yrs since dx and she is doing really well. (knock wood).   When your little guy gets a little older, you should send him to Camp Oasis.   I can't say enough good things about it.    Liz has met a number of kids that can relate and she can feel "ordinary".   It's terrific!