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Saturday, May 14, 2016

Food For My Kid with Multiple Food Allergies

This is the last of my Food Allergy Awareness Week Posts and I thought I'd go through the process of what it's like to buy and prepare food for my son.

To start, when you look at it all at once, it's a lot to manage and it's all very overwhelming.  Although it would have been great to somehow download this right from the get go, we are still learning the nuances of feeding our kid with multiple food allergies.  This is exactly why we don't expect anyone else to be able to cater to our needs when it comes to food. The best thing anyone can do to make us feel welcome and comfortable is to just not offer any food to our son and to not hold food or be near food when playing with him. An extra level of comfort is added if everyone washes their hands and wipes their mouths after eating (or drinking - especially beer), but ultimately we know we're in charge of keeping him safe so we try to do all the hard work, but appreciate any offered support. 

Here's how it goes when we shop for O's foods:

Some of O's allergens are covered by the FDA's requirementfor labeling and should be listed in the ingredients using "plain English" as Wheat, Peanut, Tree Nut, Egg, or Soy.  They essentially have two options for labeling: the word “Contains” followed by the name of the major food allergen – for example, “Contains milk, wheat” – OR -- in the longer ingredient list in parentheses – for example, “albumin (egg).” 

Allergy families tend to only trust certain brands after a while because there are frequently errors in labeling and you've got to read every ingredient anyway every time since ingredients and formulas change all the time.  ALSO, the use of advisory labeling (i.e.,  “may contain,” “processed in a facility that also processes,” or “made on equipment with”) is - at this time - voluntary and optional for manufacturers. There are no laws governing these statements or what they mean, so they may or may not indicate if a product could have come in contact with a specific allergen during the manufacturing process. So if they don't plainly state that their product is made in an allergen-free facility, we have to call or email the company to make sure that they don't share manufacturing lines with the allergen because there is a risk of cross contact with the allergen

We also have to call the company to make sure that anything like "natural flavors" or "artificial flavors" or "spices" or "natural colors" does not contain gluten (wheat, barley, rye, some oats) because a "gluten free" product can still technically contain wheat and barley, and rye in small amounts that might not affect someone with gluten intolerance or celiac disease, but could be enough to trigger a reaction in a person with IgE mediated allergy.  And since those non-wheat, gluten containing grains are not included in the top 8 allergens that must be labeled clearly, we need to double check those.

Anyhow.  Onto the list of O's allergens:

Wheat (aka. Bran, Bulgur, Cereal extract, Couscous, Durum, Einkorn, Emmer, Farina, Germ, Gluten, Kamut, Matzoh, Matzo, Matzah, Matza, Malt, Seitan, Semolina, Spelt, Triticale, Wheatgrass, Wheatgerm, Wheat berries, gelatinized starch, modified starch, modified food starch, starch)
Peanut (watch out for Lupine flour - not a peanut, but high risk for reaction in peanut allergic people.)
Tree Nuts (aka. may be labeled as: Almond, Beechnut, Brazil nut, Bushnut, Butternut, Cashew, Chestnut, Filbert, Ginko nut, Hazelnut, Hickory nut, Lichee nut, Macadamia nut, Nangai nut, Pecan, Pine nut, Praline, Pistachio, Shea, Walnut)
Egg (aka. albumin, lysozyme, ovalbumin, surimi)
Soy (aka. edamame, miso, natto, shoyu, soya, tamari, tempeh, tvp, tofu, vegetable gum. O can eat Soy Lecthin and Refined Soybean oil)
Coconut (can be labeled as a Tree Nut)
Barley (Not covered by FDA's labeling laws and can be listed as: brown rice syrup, caramel color, malt, malt vinegar, maltose, fructan, brewer's yeast)
Rye (Not covered by FDA's labeling laws)
Legumes (Not covered by FDA's labeling laws - O had a reaction to green beans and lentils in the last six months. We're waiting to confirm these allergies with a test at his next allergist appointment.  Until then, we're avoiding those and other legumes which we don't eat regularly including adzuki beans, black beans, soybeans, anasazi beans, fava beans, garbanzo beans (chickpeas), kidney beans, lima bean, etc.)
*Oats (Not covered by FDA's labeling laws.  *O is NOT allergic to oats, but anything with oat in the ingredients must be marked as gluten free or they can not be used because there is a very high risk of cross contamination in manufacturing.)

Mind you, the "Plain English" label laws only apply to food - not to cosmetics, bath and body products, or cleaning products - so for any of that stuff, you have to really get familiar with how all of the above might be used as a derivative in various products that you use every day.

Then, after all the label reading to confirm nothing up there shows up in the food we're trying to buy, there's actually preparing the foods.  Cross-contact and cross-contamination with allergens in the kitchen is a big reason allergy families don't eat out and don't really eat food prepared elsewhere. 

For example, a knife that has been used to cut a regular bagel and is only wiped off or rinsed with water before being used to cut a gluten free bagel could still have enough wheat allergens remaining on the knife to cause a reaction in a person who has a wheat allergy.  All equipment and utensils must be cleaned with hot, soapy water before being used to prepare allergen-free food. Even a trace of food on a pan, spoon or spatula that is invisible to us can cause an allergic reaction.  Certain items, like serrated knives, cutting boards, cracked stoneware, mesh strainers, which can not be totally cleaned in those tiny nooks and crannies should probably not be used.

It's a lot to process - we've had several good friends and family ask us what they can buy for O to have at their parties. We generally bring his safe foods along with us but if you want to offer some safe foods just keep them in their original packaging for us to read. Anything that's not in the package is usually not considered safe. We are beyond grateful that anyone ever even considers accommodating us at an event where there will be a lot of food, but we never expect it because we know just how hard that work is.  That said, one or two safe snacks can go a long way in making us feel like part of the fun and just bear with us as we chase O around watching everything he touches while wiping things down.  It's what we do!

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