Now, I complain a lot about cooking and getting my kid to eat. But let’s face it. My daughter can eat anything.
What if eating anything was the problem? What if your kid was severely limited in what he/she could eat? I’m not talking about picky eaters, I’m talking about being allergic to food. We’re often aware of common allergens—peanuts or milk… But there are some people who are allergic to almost everything. I say everything, because I look at the list they can’t eat and I think, “Whoa. That’s everything I eat.”
Eosinophil-associated Gastrointestinal Disorders (EGID) occur when specific white blood cells are in too great abundance in digestive systems (okay, so this is the really unspecific non-technical version) and these react to cause diarrhea, malnutrition, chest pain, choking, and so on. Basically, people with this problem have a variety of food-related allergies. Many of them have to avoid the entire “top 8 allergens”: wheat, eggs, dairy, peanuts, tree nuts, fish, shellfish, and soy. Some people with EGID are allergic to other foods in addition to these—vegetables and fruits, even. When I say “avoid” I mean, labels have to be checked for even small amounts of any of these related products. Did you know Barilla brand pasta sauce is one of the few bottled sauces without any of these allergens? Even a couple of their varieties have soybean oil.
I look at that and despair. Feeding tubes and drink/food supplements are not uncommon in this group. Hospital trips, surgeries, research—these things are a part of their everyday lives.
But I’ve been reading a lot about these parents with kids that have EGID. It’s amazing how positive they are. Over and over they say that there is a focus on what they can eat vs. what they can’t. The parents know that food becomes an enemy and they work hard to try to make eating a positive experience.
Now that’s love.
Meet Katie, a friend of mine from high school who has THREE kids with symptoms or confirmed cases of EGID. I asked her to write about her children and how this diagnosis has affected their lives. Here’s a little about her family: Nathan is 4 and has confirmed EGID but Matthew is 1 and 1/2 and does not. We knew something was not right with Nathan from the time he was born. He had nasty reflux, was always crying, and would choke and gag when he would eat. It took 18 months that were filled with hospital stays and doctor visits until we got a diagnosis. Nathan wound up choking on a banana and having to get taken to the ER by ambulance. They found out then that there was something wrong with his esophagus. Nathan gets most of his nutrition through a feeding tube in his stomach called a g-tube. He is a very picky eater and has a diet free of the top 8 allergens. You cannot tell by looking at him that he has any health issues.
Our 18 month old Matthew does not have a confirmed case of this disease. As soon as Matthew started showing signs of EGID, we removed the top eight food allergens. Like his brother, he is on neocate through a g-tube and eats a restricted diet. He is also on oxygen at night and has neurological issues.
Starting when school gets out, for social reasons, Nathan will be on an elemental diet and then we will probably start food trials. Both boys get daily pulmicort (a steroid) through the nebulizer. The only difference between them is that one has EOS on a biopsy and the other does not probably because he does not eat foods that he is allergic to. So I consider Matthew to likely have it but not officially diagnosed......yet. We are going to Cincinnati Childrens' Hospital for a good 2nd opinion on the boys in late summer/early fall.
Our oldest, Zoe does not have a confirmed case of EGID but she does have stomach issues. However, since we started eating allergen free at home, her stomach issues have improved as well as her behavior and performance at school.
Katie writes a blog called “Cooking Allergen Free” if you want to read more about her adventures in cooking.
To raise awareness for EGID, a facebook group has been started for the “Eat Like Us for a Day Challenge” which will happen on Friday, May 14th. Do you think you could go even one day without eating any of the top 8 food allergens? I’m going to try. The group is also asking that participants donate to aid research into EGID, which has no cure, and basically the only treatment is restricted diet.
Just to get you started even thinking about it, here are a few things you can eat:
- potato chips (you’d be surprised at how often I saw this as a recommendation)
- rice (yay!)
- beans (check the labels) or make it from scratch
- french fries (if you get them at a restaurant ask them to cook them in a freshly washed, separate fryer). Apparently Burger King is okay.
- meat (cooked at home)
- rice krispies
- salsa and corn tortilla chips (check the labels)
- Cabbage, rice, and Kielbasa dinner
- Doughnuts (special ones)
- Herb-marinated chicken breast
- orange juice (as long as the facility doesn’t prepare peanuts!)
I was amazed at how many wheat/dairy/soy free prepared foods are available at Whole foods and other grocery stores. But I was happy to find that cooking itself isn’t totally out as long as you have some resources. The website Living Without is a magazine for those with food allergies. Even if you can eat some of the top 8, a lot of the recipes in this magazine are for those with even 1 food allergy.
I don’t have food allergies. And suddenly I’m looking at the variety of food out there and just loving it. I’m so lucky! My daughter has no excuses at the dinner table.
But let’s be sensitive to those who do have food allergies. Just the social atmosphere that surrounds food must be a huge issue for these kids. When you bring cupcakes to school for your kid’s birthday—they just have to watch. Coming over to your house for a play date could turn into a whole Q&A about why eating that snack is forbidden. Food is such an afterthought for most of us.
Please join us for Eat Like Us for a Day Challenge on Friday, May 14, 2010. You can ask questions to the group and find support if you or your children have been affected by food allergies. You can also contribute to research for EGID at www.apfed.org. Leave us a comment so we know if you’re joining!
I’m also going to post a recipe tomorrow that you could make on that day, and you won’t even feel like you’re going without. Promise.