My daughter was diagnosed a year age at age 7 with celiac, [...]

Posted by lisa0811 @lisa0811, Mar 22, 2016

My daughter was diagnosed a year age at age 7 with celiac, crohn’s and colitis. This past year we have mostly dealt with the celiac, per our GI doctors orders. We take a Fecal-caltek (not sure that is spelled right) stool sample about every 6 weeks. this test tells us if any part of her intestines are inflamed. basically the only time her numbers have every been even almost normal was after a round of predisone. Now a year later we will be doing another colonoscopy and an endoscopy to see exactly where the inflammation is coming from. I have not yet found any little ones with all 3 of these diagnoses. Not even sure if this is where I need to be but just looking for a place to help with suggestions.

Interested in more discussions like this? Go to the Celiac Disease group.

Hi Lisa,
My son was diagnosed with celiac at 13, UC and crohn’s at 18. He is now 24 and living life fully. He has an occasional flair up with UC and keeps things under control with diet and istatis cooling a natural anti inflammatory pill. His symptoms really improved when he eliminated all dairy products and sugar….Have you tried any dietary changes besides eliminating gluten?

REPLY

Hi Doug, You are one of the first people I have heard that has a child with all three diseases. It is so good to hear that he is doing well, I think that is one of my biggest fear is her future and quality of life. We have only pulled gluten thus far, her next colonoscopy is May 12, at which I am fully expecting them to pull Dairy. what milk does he prefer? she is a big milk drinker so it will be difficult for sure. What is the deal with the sugar? She recently tried and liked Almond Vanilla milk. thank you for getting in-touch with me.

REPLY

Hi Lisa I was surprised to hear about your daughter as well and I’m sorry that we have this scenario in common…My son Jordan enjoys both Rice, Almond and coconut Water/milk and uses all of the above alone, on GF cereal and or to mix up a nutritional shake called Vega One available on line through vitacost (wait till it goes on sale BOGO 50% off) From personal experience Milk, sugar and processed foods seem to aggravate/flare up the colitis. Jordan has not a had a flare since getting off sugar and dairy and he is much less congested. Not one of our Doctors suggested going sugar or dairy free so this may be something you might try on your own or ask your doctor what he or she thinks. In the meantime best of luck at your next appointment and I pray all the best for you and your family!

REPLY
Please sign in or register to post a reply.