Celiac + FPIES

THIS IS REAL! Celiac is REAL! Food Allergies are REAL!

This June, Kendall had her second experience eating gluten since we she was diagnosed on 12/19/12 (yes, the date will forever be ingrained in my mind.)

Her first exposure to gluten was 5/5/14 - by my hands. I accidentally fed my Celiac daughter gluten. Her reaction was severe and required an ambulance to transport her to the closest hospital, where I was greeted by a Dr that said to me, "What do I do? Give her an epi pen? I don't know about Celiac." [This is NOT a lie, or fabrication, or exaggeration.] My daughter laid unconscious and lifeless, and the ONLY person in the room that, IMO, could save her, had no idea how. And, it was me who made her sick. It took a long time to get over that guilt (maybe I still have it a little?)

6/2/19 - We took the girls to eat at PJ Whelihan’s in Downingtown. Michael discovered several months earlier that there was a waitress there who had Celiac and interrogated (yes, that is what I call it, because that is likely what it feels like as a waitstaff) about their preparation, caution and attention given to food allergies, specifically gluten. Now, mind you, Celiac is NOT an allergy; however, due to the amazing gluten free fad diet and the lack of education, we are required to call it an allergy when we are ordering out. [This made us feel fraudulent, as we have family members with severe food allergies, that have a specific course of action should they require medical attention.]

I was never really comfortable with the idea of PJ's but we had been there over a dozen times and the girls enjoyed it. As any great Celiac Mom, I questioned the food when it was delivered and was reassured numerous times it was made safe. A gluten free salad and gluten free kids hamburger on a gluten free bun. I then did my normal eye inspection. In fact, the fries that my one daughter ordered where way too close to Kendall's burger when the waitress was carrying them, but they assured me they were a safe distance away, that no cross-contamination was possible. Within 90 minutes Kendall started to have a stomach ache. Followed by several trips to the bathroom (we happened to be out shopping after lunch.) We did not think much of it, but knew it was better to get home quickly. That morning we participated in a 5K for the elementary school, and it isn't uncommon to have several bathroom trips after a race.

Exactly 2 hours after eating her burger, we pulled into our driveway. Kendall could not make it into the house before vomiting. She would then continue to vomit for the next 4 hours - without stopping. I immediately called CHOP in Philadelphia and spoke with the emergency nurse. She explained they could not order Zofran (which miraculously helped her years earlier) or any other medication. I asked, if she had an allergic reaction could you order an epi-pen, the response - no. I get it, she needed medical attention, and we intended on getting her that; however, the closest hospital was not my first choice, and if we could get her to the closest children's hospital, that would be been ideal.

My husband helped Kendall into the car, we hoped to make it the 20 minute drive to Nemours; however, 1 minute in the car made it obvious that was not a good choice. We arrived at Chester County Hospital just after 4 PM. I explained to the nurses that she needed medical attention (who doesn’t in an ER, I get it.) They gave her Zofran, and a barf bag, and sat us in the waiting room. They suggested, because it was crowded, that we go to the side room, which would be a bit quieter. HOURS later, my daughter, who continued to throw up the entire time, eyes rolling in back of head, pale skin, clammy to the touch, sat in a chair in the waiting room of an ER vomiting, continually, without medical attention.

Finally, around 7:30 PM they brought her into a room. They gave her an IV, started fluids and administered Pepcid. Eventually her vomited stalled and they released her. My husband, who was experiencing his first ER visit, drove her home and helped her back into the house. She was exhausted, mentally and physically. Completely wiped out. Michael, my husband, reported back that we were to follow up with her doctors and suggested that we see an allergist as well.

6/27/19 – Kendall was diagnosed with FPIES (http://fpiesfoundation.org/fpies-questions-and-answers-from-the-medical-advisory-board/qa-what-is-fpies/). After the allergist had performed a skin test to determine that she was not allergic to gluten (or many other things), she was confident she has FPIES.

What I learned that day: 1. Most children grow out of FPIES by the time they are 3.

2. It takes 2 incidents for someone to be diagnosed with FPIES.

3. Without proper medical attention, someone with FPIES will go into shock, and potentially die.

4. Kendall will have to carry a letter to present (should she be glutened) to a medical professional so that they can better understand how to help (save) her.

5. We can never make a mistake again.

This morning this image showed up in my feed, which is why I share this story with you. My 10-year-old will go her entire life asking these questions, and I cannot image how that feels. The weight that is on her shoulders. We, Michael and I, do the best we can to protect her. But, one day, she will be on her own. Will society protect her? Will she be safe? I sure hope so.

#celiac #glutenfree #fpies #gfdiet #allergies