A Letter to my Child's Leader Explaining Gluten Intolerance - or Paleo Diet

Recently L, my nine year old daughter, went to her activity group at our church. For a year I had to accompany L to her group to assist with both my daughter and her friend with ADHD. When they assigned new leaders I was thrilled that the leaders were able to keep both girls calm and in control. I no longer have to attend meetings with her (I am now in the hallway). I call her leader the child whisper - she has a unique bond with special needs children. Yet, this blinds her to the more dangerous aspects of a mental health issue. It can also cause a person to assign blame to the parent. "If I can keep her so calm in the one hour twice a week that I see her, why can't her mother do it all the time."

I discussed L's diet with the new leaders. Since they had never offered snacks before, it had never been an issue. Also, both S and J's leaders have been extremely understanding. One of J's leaders even brought him an organic orange - since he wrote a very detailed list of what he cannot eat. While I am proud of J for self advocating, we then discussed moderation, and the difference between eating in the home and out of the home. Also, how it is not very funny to include every preservative, dye, etc. on a list.

S leader made a paleo banana muffins for all of the girls to eat. Before hand she checked with me to make sure that this was ok. This last week, in addition to cookies, the also brought oranges. Even though S is sick of oranges she took one and did not let her brother eat it.

I also bring them snacks. I make sure to have something with me every week. Last week it was oranges, carrot sticks, and Lays. I even included L's favorite since I knew it had been a tough week.

I knew there was a problem the minute L walked out of her meeting. She had huge red raccoon eyes. My first question "what did you eat?" Then her I see her friend with a muffin covered in what looked like M&Ms. When I went to talk to her leader she used phrases such as "That is so negative, I prefer to be positive," "Tell me what she can eat instead of what she cannot eat," "My dad was gluten free and I would not wish that on any child," and my favorite "My nephew had ADHD and could not eat red dye, so I completely understand." If she understood she would not have fed my kid this junk, knowing that she was not suppose to eat it. L is nine, if someone tells her it is ok, she will eat it. I am convinced the teacher told her it was ok. I am very upset that my right as a parent was question by someone who thought they knew what was best for my child.

As a person with aspergers I do not always respond best in the moment. I am also not very articulate. However, I believe myself to be a much better writer (spelling errors aside). This is the letter that I wrote as a response.
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I do not think I was clear in relating that while our family being gluten free is a choice, it is a direct result of L being allergic to gluten. While she will not go into anaphylactic shock, such as a peanut allergy, it does do harm to her body. I got the strong impression that you do not agree with what my family eats. I respect your option. However, as the sole caregiver of my daughter it is my obligation to keep her safe. So, here is a list of what she is not allowed to eat and why she is not allowed to eat them. I do not mean this to be negative, but to help you understand why these choices have been made. It is my understanding, backed by psychological research, that individuals are more likely to comply with medical instructions when they are given more information.

Gluten – L must not ingest this. This includes cross contamination. She is allergic and when ingested it can cause severe abdominal pain, not allow her body to absorb the nutrition that she needs, and affect her behavior. Every time she ingests gluten her body has to heal from it. For more information you can visit http://celiac.org/

Dairy – L cannot have diary because the proteins of milk are too similar to gluten and can cause her body to have an allergic reaction from its consumption. For more information you can visit http://drclark.typepad.com/dr_david_clark/2012/03/the-danger-of-milk-products-and-gluten-sensitivity.html

Soy – soy is often contaminated with gluten. It is also not a healthy for your body. So, we steer clear completely. For more information you can visit http://celiacdisease.about.com/b/2013/04/23/is-soy-gluten-free.htm

Dye – Dye is made from petroleum, the same stuff that is put in our car to drive. It is disgusting and we removed it completely from our diet. Even if it has not effect on behavior we do not consume it at the request of her brother J. I would prefer my daughter does not digest a petroleum derivative. For more information you can visit http://www.100daysofrealfood.com/2012/03/13/real-food-tips-7-reasons-i-hate-artificial-food-dyes/

Sugar – while we mainly watch sugar as a relation to her older sister with bipolar, this is still a concern for L. Sugar can cause a reaction for individuals with a gluten allergy. We use honey, agave, and stevia. You can find out more here http://celiacdisease.about.com/od/glutenfreefoodshopping/f/Is-Sugar-Gluten-free.htm We do not use Splenda because it can cause intestinal problems – which is what we are trying to heal in L. Here is more information http://articles.mercola.com/sites/articles/archive/2009/02/10/new-study-of-splenda-reveals-shocking-information-about-potential-harmful-effects.aspx

I would prefer that I make all items for her. Since our household is completely gluten free I do not have to worry about cross contamination. However, this would require advance notice, and I cannot guarantee that the item would be exactly the same. For additional recipes you can look up recipes which are Paleo. Lexi may consume all paleo recipes.

PLEASE ASK ME BEFORE FEEDING ALEXIS ANYTHING.

 

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Here are some snack ideas. All of these L eats.

Apples and Peanut Butter (she only eats organic peanut butter from Ralph’s)

Raisins

Lay’s Potato Chips – original (she can also have ruffles original, and Frito’s original but Lay’s are her favorite)

Fresh Fruit – although what she will actually eat depends on her mood, bananas are a favorite

Pepperoni

Pickles

Zevia Soda

Enjoy Life Chocolate Chips (brand is in an orange bag and can be found at Target, Fresh and Easy, and natural food stores)

Sweet Potato Chips (must be gluten free)

Gluten free Dairy Free Popcorn

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I then included the coconut cupcake recipe, the breakfast brownie recipe, and a sugar cookie recipe that I have never made before.