Have you ever thought about how much our society revolves around food? It is the center of our celebrations. It is the thing that sustains us, nourishes us and tempts us. Well, imagine a life where you were allergic to the things you liked to eat, or even worse could no longer have an solid foods. That would be torture for just one meal, but imagine a life altered by that dilemma, and you will begin to appreciate the stress, struggles and difficulties, both emotionally, physically and socially of a life with an Eosinophilic disorder.
Our daughter, Kylie, was diagnosed two years ago with one of these disorders known as EE, or [E-O-sin-O-fill-ik E-soph-a-jI-tis] Eosinophilic Esophagitis. It is a condition that is different in each person diagnosed and there are no known cures today, only different medicines, diets and protocols that you hope provide solutions. In my daughter’s case, she went through skin and RAST testing which measure allergic reactions to certain things tested. The skin tests told us things she might be allergic to on a scale from 1 - 4. These included things in the environment as well as foods. The RAST tests were done by taking vials of her blood and testing them for specific allergic responses. The list was narrowed down through the skin tests. This is how we found out that she is anaphylactic to Oats and highly allergic to other items such as wheat, barley, rye and has other sensitivities to eggs, corn and some dairy. It was after much searching for further answers and trying alternative methods of testing for allergies that we found out she is also allergic to B vitamins and more specifically the hormones in milk, rather than lactose or casein. It has been a long journey including trips to the GI (gastroenteroligist) and endoscopies to see what is actually going on inside her throat plus countless, scary trips to the ER while in the middle of a reaction that have helped us to grow a bit wiser in understanding her allergies. We have often kept detailed food diaries since the reactions are commonly delayed with EE. So there is lots of guess work involved in knowing what might have caused the flare ups. And there are always the possibilities of cross contamination by foods being processed at a plant that processes ingredients you are allergic to, even if they are not in the list of ingredients on the label. Uhhh! You get the drift...not an easy road, and try packing things on the go or eating while traveling. It is definitely a challenge.
So how did we get started on this journey of discovery? It started when my husband was having similar incidents of things getting stuck going down that I finally questioned her allergist about it. Dr. Warner said there could definitely be a genetic component and that she thought it was worth talking to a gastroenterologist. And so that began our relationship with Dr. Kubchandani (Dr. K or Dr. Sanjay for short). He is young and smart, and Kylie really respects him. He took a more laid back approach to the EE diagnosis suggesting she start on flovent, a swallowed steroid treatment to shrink the swelling in her throat. Kai was already on so many allergy and asthma meds that this was concerning, but we started on that course. After several scary incidents and reactions, her allergist had something else in mind. It was 9/11/08, a day we will never forget after Kylie’s allergist ordered us to begin a highly restrictive diet. When she listed all the things we had to avoid: [wheat, rye, barley, oats]- basically a gluten-free diet plus no corn, dairy or nuts, I thought we were all going to go nuts! I cried after spending 3 hrs. of shopping at 3 different stores reading labels only to find that one of the banned items was always in the ingredients. It took forever to navigate the grocery store and was more and more depressing reading label after label and feeling the helplessness of not knowing what to possibly feed your child. We were down to very few meats, fruits and some veggies. Many sauces, dressings and seasonings had to be avoided, too. It was a difficult time for us all. As a family, we tried to live within the restrictions ourselves so Kylie didn't have to go it alone, atleast with our family meals. I tried it for a month and it was very challenging and highly restrictive. The easy part was that I had the ability to return to the foods I wanted to eat, and she could not.
Things got easier as we learned alternatives to use in cooking, found new sources for foods, and even some treats. Thank goodness she could have soy, potato and rice to work with! I am very grateful for that as well as the amount of information and support that we have received from other parents on the eosinophylic yahoo group I belong to. We share ideas, treatments, solutions that have worked for our kids, recipes and where to find help and locate good doctors. But incidents continued despite our food journals and what we thought at the time was avoidance to allergic foods. Who knew that there was wheat in Twizzlers licorice or oats in Hot Dog chili? Now, we read ALL labels and never assume. My best advice to parents of newly diagnosed kids.
The reason that I am posting this information now, is that this is National Eosinophilic Awareness Week, and to raise awareness for this growing disorder that is affecting so many people, especially young children at an alarming rate, I am daring you to take the EGID challenge of trying to follow a highly restrictive diet for one day, or even just one meal. If you are on facebook, click on the link above to go to this facebook event.
If not, simply follow these instructions:
On May 14, commit to eating only foods that are free of the top six allergens. These are: Milk (in all forms), Egg, Wheat, Nuts/Peanuts, Soy, and Seafood. This may be quite a difficult task, but after all, this is a CHALLENGE! If you miss doing it on the 14th, try to do this one day or for one meal this week. If you would like to support this cause, consider donating the money that you would normally spend on a coffee, ice cream or one meal to help find a cure. There are two great organizations: CURED and APFED, which raise awareness and support research to help find a cure for EGID (Eosinophilic Gastro Intestinal Disorders). Even a small amount adds up, and yes, the doctors are making progress with their research. Please help them continue making strides towards a cure by donating today in Kylie’s honor. As you can see by her photo, she looks like the average teenager. You would never assume that she has life-threatening food allergies. Not all of the children are as lucky. Some of these children have feeding tubes through their nose or stomach that help sustain them. You can read more about them on the websites below.
To donate to CURED, click here.
To donate to APFED, click here, then click on the donations link.
Feel proud that you are helping brighten the lives of the families and children effected by EGID. And the next time you feel deprived because you missed out on a chocolate chip cookie or favorite meal, count your many blessings and pray for a cure. God Bless You!