Parents of Young Children with Celiac Disease - Any advice? - Celiac Disease Message Board

Hunter4Heaven · 02-05-2007, 12:48 PM

Hello Parents,

I am a mother of a 3 yr old boy who has had "failure to thrive" issues at a very young age. He is only 23 lbs and is below 0 percentile for his age in the way of weight (he is short in stature but is still on the charts for height). For the longest time I thought he was just petite as my husband and I aren't very tall and I tended to be a thinner child. I just kept hearing from everyone I knew that all kids develop in their own way and time. The only thing that made me wonder if he had some stomach issue was his loose foul smelling stools. Developmentally he is amazing in the way of hand eye coordination, memory, and his vocabulary is beyond some 4 yr old boys. But for the past year he complains of stomach pain almost daily and now will complain of his rectum hurting along with burping, flatuating, and a fluctuation between constipation/diarreah. His regular Dr. said that she is now very concerned with his lack of growth on top of his symptoms and would like us to take him to a pediatric GI Dr. We haven't been able to go to a specialist yet only because my husband and I won't have medical insurance until March 1. I had been doing a food journal for him as I was trying to monitor what he was eating and see if I could get him to gain weight by adding fat and high calorie food to his diet - but all my effort just showed me even more that he has to have a problem. Some days he would eat 1100 calories (which is a great deal for a 3 yr old his size) and the scale would never tip. My mom, who is a nurse, had mentioned Celiac's disease to me and told me to look into it. After reading the symptoms, it sounded just like him. He even has the rough skin rash/patches on certain parts of his body. This all leads me to believe that he has a nutritional absorption problem and it could very well be caused by Celiacs. I put him on a gluten free diet for the past 5 days and already his stomach pain is a lot less frequent. I am hoping and praying that whatever specialist we take him to will not be the kind that knows nothing about Celiacs or is unwilling to look at that as an option.

Any parents out there who have had children with the same symptoms or problems? Can you give me any advice before seeing the specialist? Any gluten free foods or recipes your child liked/loved that you care to share? I have spent so much time worrying about my son that I'd like to put that energy into being as proactive as I can so he can get back to growing and we can move on from all this!

It's just nice to know we're not alone in all this. Any advice would be appreciated.

Thanks to anyone who has read this far

mnmnmnmn · 02-06-2007, 03:39 PM

Hunter..... while i do not have a child with this, i "take care of" children that do occasionally. It sounds like your child does have some form of digestive problem, whether it is gluten intolerance only tests will tell. Many digestive or even malabsorption problems present with the same symptoms, mainly weight loss or failure to thrive. Here are a couple things that I recommend... eliminate or reduce lactose (milk) if you havent already, limit fat. Fat is likely something that your child is struggling with and with doing a high calorie you have to be sure you arent giving them a bunch of fat as this could only make it worse. The celiac diet is healthy and mostly low in fat so that is why is may be helping.
Hope that helps a little.

Hunter4Heaven · 02-07-2007, 10:16 AM

mnmnmn - Thanks for the tip. I have heard about lowering the dairy, but I didn't even think about fat intake being a factor, but if he has a nutritional absorbtion problem it makes sense because fat is usually more slowly absorbed and harder to process even by the normal person!

Thanks again for your time and bringing that to my attention.

Ratatosk · 03-01-2007, 12:30 PM

Has your son been tested for cystic fibrosis?

alamaz · 03-05-2007, 03:04 PM

be careful about taking your son off of gluten before an exact diagnosis. if you eliminate the gluten and get him tested and the tests come back negative, he could still have celiac. ask your pediatrician for an initial blood test and go from there. do not diagnose this disease on your own as it brings with it plenty of other complications if not monitored properly.
before i was diagnosed i had to ask for the blood test and was given a scoffing by my dr. who thought the disease is just hype. was she ever wrong when my blood tests were off the charts! as i'm finding now, specialists or drs. in general who are aware of celiac are few and far between. also, celiac tends to run in families so if some one else in your family has it, there is a good chance your son (and yourself!) has it as well.

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amy