Elimination Diet Experiences?

[OBXMom]

My 8 year old son with celiac disease was not showing enough improvement of his GI symptoms after 4 months on a gluten free diet. Under the guidance of a children's hospital feeding clinic we have begun an elimination diet to explore additional food allergies and sensitivities. My son tests positive on blood and skin prick tests to many foods.

I am interested in hearing about anyone's experiences with elimination diets following a celiac diagnosis. It is hard work, and I would love to hear what worked and what didn't. I am interested not only in the physical results, but also the psychological. My son is very afraid of new foods, well, actually of most foods, and I am concerned that we will be making his fears worse with the additional restrictions and constant analysis of the results of each thing he is eating.

Thank you for any experiences or insights you can share.

[ryebaby0]

My son was hospitalized at 9 and due to the severity of his condition, was placed on an elimination diet. He ate only rice with olive oil and salt for about 3 weeks (breakfast lunch and dinner) plus 7-8 cans of an prescribed elemental formula (yes, by mouth. He HATED his ng tube) and then added another food item every 10 days. His peds GI let him make a list of the things he most wanted to eat, and then she told us which ones to add. As we were successful, after about 6 weeks we added one food every 7 days, and then two, and then his diet was unrestricted (apart from the gluten and egg -- he was allergic to that, too). I'm thinking we added potato, spinach, carrots, soy, first, and peanuts and milk were waaaaay at the end.

My son actually was very, very comforted by eating such a simple diet. He didn't have to worry about getting sick, and we let him choose 4 or 5 foods he didn't want in the house (like french fries) until he could have them too. We got a beautiful notebook for the food diary, and let him be in charge of it. They need to feel like they have some control, I think. The monotony was broken up by different kinds of rice (all white rice is not created equal) and olive oil (ditto). We got some fancy plates, too, and he would sometimes pick what to eat from -- but by and large, it was a very positive experience. (Which sort of tells you had bad things had gotten!) It gave us time to learn how to read labels (another piece of control your son can master) and research ingredients, too.

joanna

[OBXMom]

Joanna, thank you so much for sharing with me about your son. It sounds like he went through a really tough time. It must have been encouraging to find that he only was allergic to eggs, in addition of course to the wheat issues. Do you remember if he had an immediate response to the eggs, or did it take a while to figure out? Also, how is your son doing now? I told my family about your story at dinnner and they all want to know.

Thanks again, Jane

[ryebaby0]

When he was hospitalized (after about 3 months of testing/illness/decline and 3 weeks of not responding to a gluten-free diet) he weighed 48 pounds, which is literally off the charts. He is now nearly 15; 125lbs. 5'9" (which are the 60th and 75th percentiles for weight/height) and apart from his particular combination of immunesystem malfunctions, perfectly healthy. He eats like a horse -- a fairly varied diet --- and you would not know he has an interesting health history by looking at him.

He had no food problems until he became ill that year. We eventually kept a food diary and had started to suspect eggs too, but he was so sick -- life-threateningly so --- that more vomiting was hardly a definitive sign. In hospital he was RAST tested and that was the only positive. He stayed off eggs until last summer, when at my request they did an egg trial and he passed. I really felt that he had never had a food allergy, and considering how damaged his gut was and how challenged his immune system is, that it was a temporary thing as part of the celiac "crisis". Including eggs in gluten-free food makes it much more palatable!

[OBXMom]

When he was hospitalized (after about 3 months of testing/illness/decline and 3 weeks of not responding to a gluten-free diet) he weighed 48 pounds, which is literally off the charts. He is now nearly 15; 125lbs. 5'9" (which are the 60th and 75th percentiles for weight/height) and apart from his particular combination of immunesystem malfunctions, perfectly healthy. He eats like a horse -- a fairly varied diet --- and you would not know he has an interesting health history by looking at him.

He had no food problems until he became ill that year. We eventually kept a food diary and had started to suspect eggs too, but he was so sick -- life-threateningly so --- that more vomiting was hardly a definitive sign. In hospital he was RAST tested and that was the only positive. He stayed off eggs until last summer, when at my request they did an egg trial and he passed. I really felt that he had never had a food allergy, and considering how damaged his gut was and how challenged his immune system is, that it was a temporary thing as part of the celiac "crisis". Including eggs in gluten-free food makes it much more palatable!

Thank you so much for letting us know how things have worked out. It is great for us to hear such a terrrific outcome, as we are the beginning of our celiac journey. My son has always been around 25% in height and weight, which honestly never bothered us, but it has been amazing that in his few gluten free months he has jumped to 45%. Can't wait to pass all this on to my family . . .