FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Monday, December 13, 2010
Ignorance is bliss....
It was brought to my attention yesterday that someone thought that an Allergen-friendly recipe for a cookie was comical. It is a recipe for: Inoffensive Cookies: Recipe for Gluten Free, Dairy Free, Egg Free, Soy Free, Nut Free, Fructose Free Cookies. This author provided her commentary for the well-thought out recipe someone provided. To her, it was comical that someone would need to follow such restrictions. Even going as far as to say that if they had to follow these restrictions, that she felt sorry for those people but her comments were anything but sympathetic. They are condescending and even ignorant. Her opinion doesn't offend me in the least, it is her opinion. She is entitled to it and I always welcome people to voice their opinion...how else can we learn? How else can we see just how much we need to teach others.
Her opinions do not offend me. Her inaccuracies do. Such as: "if someone can't have gluten, dairy, eggs, soy, nuts or fructose, then they probably have more to worry about than baking cookies". Well, you're right about that, but does that mean they don't deserve a cookie too? She goes on to give the recipe (thanks for sharing because I think I could use this in a modified way for my son soon), stating "The comments in the parentheses are mine. If you are offended by my comments, then you need to get a sense of humor. Or you desperately need some Inoffensive Cookies."
Inoffensive Cookie Recipe (for people who can't eat squat)
1/4 cup plus 1 tablespoon golden flaxseed meal (we're off to a good start)
1/2 cup dairy-free, soy-free vegetable shortening (I can probably find that) This would be her first ignorant comment....dairy and soy free vegetable shortening is not easy to find....where do you think the vegetable comes from?
1 cup xylitol birch sugar (okie dokie) Really, because you have to special order this. I know, I've checked in hopes that it is something my son could eventually tolerate since he can not have anything from corn or tapioca.
1 teaspoon pure vanilla extract (ahhh... something I have!) No, you probably don't....ignorance again- pure, meaning free from soy, dairy,corn...not just one that says "pure" on the package.
1/2 cup plus 1 tablespoon Authentic Foods GF Classical Blend flour (I'll put it on my list)
1/4 teaspoon xanthan gum or guar gum (I don't think they mean chewing gum). She's right- they don't. And you'll have to be careful because xanthum gum can be from either corn or soy.
1/2 teaspoon baking soda (I know what this is)
1/2 teaspoon double-acting baking powder (I know what this is too). Yes, but again- you would never guess that there are additives such as corn in baking powder.
1/4 teaspoon cinnamon (this is getting better by the minute)
1/4 teaspoon fine sea salt or table salt (I better stick to table salt) If you did, you'd be adding corn to your recipe (not that this recipe claims to be corn free)- but just to point out it's not as simple as it may look, or as she appears to think. It's not as simple to make fun of, because it is simply not funny.
1 1/2 cups gluten-free old-fashioned oats (they are starting to confuse me again) Well, let me educate you then. Oats are contaminated with gluten in this country...it comes from the growing stages as well as the production of it. A gluten intolerant person will react to gluten in the size of a crumb. This reaction will begin to attack the small intestine villi, which will in turn result in malabsorption of nutrients, which in turn will result in more villi being flattened from poor nutrient absorption....all from minute amounts. So, assuring it is gluten free (usually from another country- such as Irish Oats) is essential for the health of a gluten intolerant individual.
1 and 1/4 cup dairy-free, soy-free, gluten-free chocolate chips (they make that?) Yes, they do. Enjoy Life is one of such brands.
Preheat oven to 350 degrees.
Line two baking sheets with parchment paper.
Combine 1 tablespoon of flaxseed meal with 3 tablespoons of warm water, mixing well. Set aside. This is your "flax egg" (I'm so glad to know that).
In the bowl of a stand mixer fitted with a paddle attachment (I'm confused enough as it is), cream the shortening, and the birch sugar, mixing on medium speed for about 3 minutes.
Add the vanilla extract and the flax egg (that's the stuff you made in the first step, I guess). Mix about 30 seconds on low speed until combined.
In a separate bowl, whisk together flour, the remaining 1/4 cup flaxseed meal, gum (remember, this isn't the gum you have in your mouth), baking soda, baking powder, cinnamon, and salt (I'm beat!).
Add oats and mix. Add dry mixture to stand mixer bowl, and mix on low speed until combined.
Add the chocolate chips (hopefully you didn't eat them all while mixing the rest of the stuff), mixing on lowest
possible speed until just combined.
Using a 2 tablespoon scoop (can't I just estimate?), place dough balls on a baking sheet and flatten them slightly (I will flatten them, I promise).
Bake in the center of the oven 13 minutes, until lightly golden. Let cookies cool for about 5 minutes before transferring to a cooling rack (then transfer to your mouth).
Source for the ridiculous cookie recipe: http://www.wholeliving.com/
This is the end of her article. She was leaving an area open for comments but has shut it down, after a few fellow FPIES mom's attempted to leave her some feedback to her article. These comments were not negative, just informative and raising awareness to the people (in our case CHILDREN, who by the way go through enough in their lives, no one deserves a cookie more) who may come across this article. I have included one comment from Mama of B (that so far has escaped her from deleting).
Mama to the B 12/13/2010
It is sad that you have to delete comments because they refute what you are saying. Our comments were very polite and in a very rude situation. I suggest that you think about the people who will come across your article in a search-- people with severe food allergies or parents of children with severe food allergies. The title alone would cause it to come up in such a search. As a writer, I am shocked that you did not consider your audience. I really hope it was not your intent for people who are actually searching for such recipes to come across this article. That would be pretty mean and I would hate to think that anyone would be that harsh. There is no humor that is worth that meanness. If you would like more information about FPIES and other severe allergic conditions, since you do not seem to understand them, I hope that you will do a little bit more research before judging this community. www.kidswithfoodallergies.com is an excellent place to start.
I'm not sure why this informative language would need to be deleted from her post. I believe in the good in people, so lets just assume she wasn't meaning to offend by her jest....then why not leave the comments given on her post to raise awareness? I will let the reader decide. I simply wanted to share that ignorance is bliss...and I don't blame her for being ignorant about food allergy's....many who do not need to include such restrictive dietary habits in their everyday just for the health and well being of themselves or their loved ones simply do not think that food could also be poison. My thinking has been forever changed by this diagnosis and I do not have the luxury of thinking something like this article/commentary is comical.
oh this made me angry! Reading her article I began looking for ways to complain to yahoo. Ridiculous!
ReplyDeleteThank you for putting into words what I felt last night when I read that. Tears filled my eyes when I came to the part about having more to worry about than a cookie. Obviously not someone who lives like we do, everyday with a child who cannot have the foods that his brothers are eating. Foods that he is entitled to, regardless of his condition. Foods that make every toddler smile! I feel for the person who originally posted this great recipe. Thank you again!!
ReplyDeleteThank you. I am so over people who have NO idea what it's like thinking what we go through is a joke. It's far from a joke but me and mothers like me bend over backwards with these complicated cookie recipes so our children can be like every other kid. Kids who eat cookies.
ReplyDelete