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[Endermom]

Hi! My name is Stacy, and I'm here because of my son, Ender. Ender is 27 months old and has been tenatively diagnosed with Celiac disease. I have been keeping him on a gluten-free diet for almost a year now, but with him starting preschool and being interested in eating more foods, I am in need of a little advice and support.

Our story:

Ender was always fussy and cranky, pretty much from the day he was born. He cried for hours on end on a regular basis, and seemed particularly uncomfortable after feedings. I gave up breastfeeding at 3 months out of exhaustion from his constant crying and put him on Similac, which seemed to make things a bit better. At 4 months we started on rice cereal, and this is where things really got bad. By 6 months of age, Ender was vomiting daily. Nothing I fed him seemed to help. He'd eat, and then about an hour later he would vomit profusely for approximately 2 hours before passing out in complete exhaustion. He would be pale and pretty much look like was dying during this time. It was quite terrifying.

I got the typical run-around with pediatricians and 3 gastroenterologists: Endoscopy (that was done after he was already gluten-free and therefore showed nothing!), Upper GI, Bloodwork, the whole thing. By 8 months, he was on nothing but formula-45 oz a day, in an attempt to "clean out his system" and let his digestive tract mature. On my own I figured out that breads and grains seemed to be a problem, which lead to the the probable diagnosis of celiac disease by 2 of the gastroenterologists. By 1 he was gluten-free completely. However, after vomiting constantly and being taken off food completely, he was afraid to eat anything, and it took a year of therapy to get him to accept a few foods and stop relying on formula for his nutrition.

As of Today, along with the gluten, he is also intolerant/allergic to rice. It causes the same vomiting that I used to see with the wheat, and smelly, acidy, bottom-burning poops that you all seem to know so well. In addition, grapes, watermelon, apple/apple juice and now dairy give the same result.

The foods that Ender has to choose from are rapidly dwindling. With Wheat, Rice, Dairy and some fruits out of the picture, he seems to subsist on meat, green beans and Fritos. He weighs 26lbs and is in the 5th percentile, so I figure that we aren't doing all that badly.

We've started preschool this week. He is also very "active", and really seemed to require a few days out a week to give me a break and him a bit of socialization. When I walked into his preschool room for the first time, there were kids eating muffins at the tables and beautiful toddler art made with rice-krispies on the walls. I have sent along a box of acceptable snacks for him, and have had long, involved talks with the teachers on what is safe and unsafe for him, but him inadvertantly picking up someone else's food or eating the "art" materials is a constant concern.

So, how do I do it? How do I keep him safe out in the big world? How do I get him to try new foods? How do I find gluten-free recipes that taste good even though I'm not able to use Rice Flour??? Its been a long 2 years, and instead of getting easier, it seems to get more difficult.

Thanks for listening.

Stacy

Mom of Ender-27months,

and Addie-4 years (she can eat anything! )

[lovegrov]

I don't know what your situation is but some people with children who have the diet problems your son has eventually find they have to homeschool, at least until the child gets older and learns he can't eat the art or sample somebody else's treat. Even if your school is completely cooperative and extermely vigilant, they still can't assign somebody to watch Ender every second.

richard

[Kim]

Stacy:

It sounds like you have your hands full. I have no business handing out advice, but I'll go ahead.. I would try very hard to keep him in school and not home school. I would meet with the teacher and principal and ensure that they fully understand the significance of vigilantly watching him. There's no reason why they can't do art projects with supplies that aren't harmful to your child. Perhaps you can volunteer with the class once in a while as well, but it seems to me that it would be important for both of you if Ender could go to school.

Can Ender eat eggs and potato/potato starch? If so, I can give you some recipes that do not use rice and actually taste good. In fact, if you look for Passover recipes, you'll find a lot of them depend on potato starch and eggs (but you must avoid matza meal, which is gluten). I can also give you a brownie recipe that is flourless and relies on canned chickpeas -- I know it sounds strange, but they're quite good and very moist.

Let me know if you want any of this stuff and hang in there. Good luck. Kim., Atlanta, GA