Some Days are Just Hard

BS"D

Lillie came home hysterical today. I expected this kind of uncontrollable, can't catch your breath sobbing from some sort of fight between friends or tormenting by a bully. But, not over a cookie.

Apparently, her camp had a Rosh Chodesh (beginning of the month) celebration involving cookies that Lillie couldn't have, for obvious reasons. Neither her counselor or her division head, whom I had given a letter to about her condition just 2 days ago, contacted me in order to send a suitable treat to camp with her. She kept screaming that I should tell her counselor not to give the other campers anything with gluten. I tried to soothe her and asked if she wanted a cookie at home that she could have?

As Lillie sat nibbling on her Lieber's Passover chocolate chocolate chip cookies (which aren't bad) and sniffling still, I told her that it wasn't realistic for me to ask the counselor not to give the other kids gluten containing treats. Although, her cries pierced my heart more than she could know, I felt I couldn't be her hero this time. Mommy really couldn't make it better. I could provide her an alternative, but I couldn't change her world. It is a terrible feeling when a child realizes their mommy or daddy aren't the heros they thought they were for so long, making everything right in a seemingly swift motion.

I am dreading pizza day on Friday, when the whole camp will be happily munching on steaming slices of cheesy goodness from the pizza store. I am hoping there is some child with a wheat or dairy allergy that will also be eating a lunch from home. But, as with any special circumstance which makes a person different, whether small or dramatic, there are challenges to be faced---sometimes daily. I am hoping these cumulative experiences will maker her stronger. I recognize that it is especially challenging when a child has to face them. I couldn't imagine an adult diagnosed with celiac throwing a tantrum at a cocktail party because they couldn't have the canapes. They may be dissappointed, perhaps desirous of the food, but emotionally scarred...I don't think so.

Lillie said she was sorry she told us that her stomach hurt. I thought it quite perceptive of her to recognize that if she hadn't spoken up, she wouldn't have been going through all of this right now. I tried to explain to her it was a good thing she was diagnosed now, as alot of damage could occur if she wasn't. She paused for a moment, but overall I think she just wanted that cookie like the other children. Five years old do have a tendency to want to live for the day.

I drafted a memo for her school teacher, as well as camp counselors (see below) in an effort to ensure that her physical and emotional needs are met while she is in their care . I also provided a list of permissable candies (see Dalla R.O.C.K.S. entry below), and ingredients that are problematic. For all its worth, it's not followed 100%, as I saw today. But, I feel clear guidelines help these caregivers who are not otherwise knowledgable of celiac disease .

MEMO

I would like to outline a few issues related to Lillie’s diagnosis of celiac disease. Please share these with any teachers or staff members who may be handling food for her. Attached you will find a list of ingredients which Lillie cannot eat in any form.

* Celiac Disease is an autoimmune disorder. Celiac’s cannot tolerate gluten found in foods. They may not eat wheat, rye, barley and sometimes oats in any form. It is not a food allergy. Even 1/8 of a teaspoon of gluten can cause a reaction in the celiac’s body. Lillie would get a bad stomachache upon consuming gluten.

* Given her age, Lillie understands that she is allergic to wheat. Even though celiac disease is not a food allergy, this is the simplest way to explain it to her and ensure she doesn’t eat items with wheat.

* Lillie’s food must not be on the same plate or in any way touch gluten containing products. If someone makes a mistake, throw out her food. Do not try to “clean off” her food from gluten crumbs. A small amount of gluten in her body has the same effect as eating a whole loaf of bread.

* Regarding brachos (blessings), many of the foods she will be bringing to school may look like they require mezonos or hamotzi. However, given their ingredients they may be shehakol and bread may be mezonos (or even shehakol). I will try and label them accordingly, and she knows certain items by heart. Many of the items that require a mezonos (i.e. rice bread) bracho only require Borei Nefashos afterwards.

* A bag of snacks and treats that are gluten-free has been given to her teacher. In case of a party, please contact me in advance, if possible, so I may send in a cupcake that she can eat. Some items like plain potato chips, fruit and plain corn tortilla chips she can have. In that bag are rice cakes and soy “peanut” butter. If she forgets her lunch, please give her this as she can no longer have the sandwiches provided by the school. Please discontinue serving her the school lunch.

* She must was her hands after playing with Play-Doh as it contains wheat.

* Regarding projects involving the above forbidden foods, such as baking challa, she may participate and bring the items home, but she cannot eat them herself. In addition, she must wash her hands after the project.

* Any questions about celiac disease or gluten intolerance, I can recommend: www.celiac.com.

Thank you for your ongoing consideration in this matter. If you need to reach me with any questions or concerns, my phone numbers are: home....and cell....