In a recent post I talked about my trip to the ER due to an allergic reaction and then later having blood drawn for a screening. Well, a few days later I returned to see my PCM(primary care manager) and she told me the results of the screening. I am highly allergic to grass(which I knew) and wheat. The wheat did not cause my hives which I knew because I have been eating wheat well, forever and never had hives, but that having wheat in my system left me vulnerable to whatever did cause the hives. She referred me to the allergy clinic on post and told me I had to stop eating wheat completely because I was so reactive that once it was out of my system, even a small amount could have me reaching for my epi pen. She also told me that there was a chance I was allergic to all or most grains so I should be very careful.
I was totally freaked out and in a panic. I wasn't sure what to do but my world was turned upside down. I got this news just a week before we were set to leave for Disney and all I could think of was how horrible it would be if I needed to find an ER in Orlando because I accidentally had wheat. I decided to go against what she said and keep wheat in my system at least until Disney so that I wouldn't have as much to worry about. It didn't really help though. I became so paranoid about all foods that I had a hard time eating. We went out and bought all kinds of gluten free and wheat free foods but I was still afraid that I was allergic to other grains too. I made sure to eat a little wheat each day to keep it in me but it got harder to do.
Once we got to Disney I was convinced it was getting worse so I decided to stop eating wheat while we were there. This really made it easier in a lot of ways. Disney is AMAZING when it comes to allergies and every where I went, the chef came out to speak to me before the meals to let me know what they could do for my wheat allergy. The only time I had planned on eating normally was our traditional last meal before the race. We had reservations for Via Napoli and I was planning on still eating pizza the night before. I've done it for every Disney race and it is my absolute favorite pizza in the world. I wasn't going to eat the outer crust but I figured the actual pizza part should be fine because the crust is so thin. When we got to the restaurant I started second guessing myself. I was thinking back on every time I had eaten wheat over the past week and realized that each time, I had an upset stomach after. I was afraid that this was due to my allergy and I was scared that if I ate the pizza, I may get sick during the race. I finally decided not to eat it.
Sitting there that evening was TORTURE. There we were in my favorite restaurant with everyone around me eating my favorite dish and I couldn't have any of it. Once we left I had to find somewhere to eat. We finally decided to head to the Land pavilion and try their quick service food court since everything there is all natural. We stopped for a quick potty break in Morocco and I lost it. I started bawling and I couldn't stop. I was just so afraid of food that I didn't want to eat anything but I knew I had to eat for the race the next day. I was so overwhelmed with everything that I had been told and that had been going on I just couldn't take it anymore. I finally calmed down and we made it to the Land. I found out that the grill there serves only gluten free items so I got a pork chop and some white rice for dinner. It was very good but I was still nervous. I did not eat any more wheat for the rest of the trip.
Today was my appointment at the Allergy Clinic. I arrived and met a very nice PA that took me back to discuss what had been going on. I mentioned the blood test and he said, "Let me stop you there. You aren't allergic to wheat. Now go on." I was FLOORED. I was so overwhelmed and relieved that I started crying. I explain to him how scared I had been since she told me that and he explained that she should have never done the blood test because she didn't do all of the screenings that she should and she misread my results. Some how she mixed up my wheat and Bermuda grass results. He showed me the results on the screen and what she told me was a 5 was actually a .65. The 5 reaction was for bermuda grass along with my two 8 reactions for two other types of grass. I am highly allergic to GRASS and that's it.
Well, that's not completely it because there is something that has caused the hives. He said that I may be right and it may be red 40 but there is also a good chance that it is one of several preservatives. He is testing for all of them in the blood panel he ordered after my visit. I will go back in two weeks for the results but he told me to just keep doing what I had been doing with avoiding processed foods and I should be fine. When we were done he told me to go home and eat some pasta. I had to laugh.
I was relieved, happy, pissed and annoyed. How could someone be so careless and say and do something to scare someone as badly as that woman did to me. Looking back now I know that all of those upset stomachs were caused by my anxiety over the fact that I had eaten wheat. I have always had a nervous stomach so all I had to do was focus on it too much and I made myself sick every time. All I really want right now is to have a do over of our trip so I can have my pizza and be happy and not worrying every second of every day.
I have been so scared of food that I told Mac the other day that our meals were going to become just grilled chicken and broccoli so I could eat and not be afraid. We had chili last night made from a gluten free mix and I still worried all night about it. I didn't sleep well at all and had nightmares all night because I was so scared of what I was going to find out at the allergist. I was terrified and miserable.
Now it is like a huge weight has been lifted off my shoulders. I've been thinking a lot about things today though. Even though I do not NEED to be on a gluten free diet now, I think I am going to continue eating mostly gluten free. For one thing, we have found several things that we really like that are gluten free. Plus I know that in a lot of ways it is just better for me. I'm really excited about it all now though. I don't have to panic if I forget to check a food label for wheat. I don't have to throw out so much stuff that is in our pantry. Even though I am planning to eat mostly gluten free it is nice to know that every now and then I can indulge in a treat or two and not end up in the ER. I'm really hoping that this will give me the flexibility and the freedom to move forward and enjoy the day to day not fear it.
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