First off, thank you for all of the kind words yesterday. I can’t tell you how encouraging and positive you all are and I really, really appreciate it.
I did rest a lot yesterday. I posted and then took a long nap. Actually, I was feeling pretty good, which was surprising. I was expecting to feel really bad for a couple of days, but the nap and a big lunch made a huge difference.
Comparing this episode to the initial glutening in order to actually get in the trial, I would say this was much better. It still stinks to throw up and be tired. If a nap and a big lunch can make a glutening better, I’m ok with that result compared to a week of being ill. I’ll take 20 minutes of vomiting and a nap and call that a day!
All was well until about 3p. I slept in my wedding rings and I normally don’t. In the summers with all of the sweat and sunscreen, I can get a nickel allergy reaction on my ring finger. After my shower, my left ring finger was swollen and sore. On the way to get the kids from school, I stopped at the store, bought some topical benadryl, and put it on my finger to alleviate the symptoms.
That was okay, until my head started itching. I asked my daughter to take a look and she said it was red and splotchy. My husband and I had a date, so I toughed it out and we to our local dedicated gluten free eatery. I love that place – gluten free everything, fries, poboys, chicken, all of it!!
Anyway, by the time we left dinner, my hand was so swollen I couldn’t make a fist. Then my right starts to swell and I can’t make a fist in that hand either. As the next few hours pass, the red, angry hives start to spread up my arms. Then I start to feel like there is something stuck in my throat. I can withstand a lot, but I don’t need to let this get into a dangerous situation. That was the moment I decided it was time to go to the ER.
Note that I’m taking Benadryl all through this and it is not stopping the spread of this reaction. By the time I got to the ER I had taken as much Benadryl as you are supposed to take in a day and it isn’t stopping.
I spend the next two hours in the waiting room with the very nice people with masks over their faces to protect us from the spread of whatever germs they had while also holding almost full vomit bags. I don’t like the ER and I think its gross. I avoid it at all costs, but when you need it I’m grateful its there.
I get to a room, the PA takes one look at me and says, “You are having an allergic reaction. We will give you ours special allergy cocktail.” I asked if I could drink it with a straw. She said, “Yep, the straw in your arm.” I asked what was in this cocktail – a steroid, more Beandaryl, and something to protect my stomach.
This is not good. I’ve been authorized to take Benadryl at will, but not anything else. I know that you cannot have had any steroids 6 months before the trial. I know that steroids suppress the immune system and we are trying to change the way mine works. Uh oh. So, I give them the card to talk to the doctors in charge of the trial. They say they won’t do anything until they talk to the study doctors.
About 40 minutes later, they come back and say the study doctors have authorized whatever medicine I need in order to shut down this reaction. Okay, here we go.
So, now, its 3 in the morning and I’m worried that my trial is over. I worried about all of you guys and gals being disappointed. I was worried about me never, ever being able to take this medicine because of an allergic reaction. I was worried about a lot. I had a very sad moment in that dark, lonely room in the middle of the night.
A few minutes later, the nurse came in and started the IV, I got the steroid and Benadryl, and laid quietly in the dark trying to rest. About 20 minutes in, I said the Benadryl isn’t working and I got another dose. They also said that the swelling and reaction would not stop today and that it would take a couple of days. I left about 4:30a, got home, and went straight to bed.
I woke up at 9:30a this morning with dread. The swelling in my hands went down by 50% or so over night, which is awesome. At least I could use my hands again. But now, in the bright morning light, I am worried about the trial. The worries from the night before all come flooding back.
I finally called the on-call doctor and we talked about it. He said a single dose of a steroid might not affect my trial. Whew! But we don’t know.
I got a prescription for a steroid. It is there if I need it. If I get to the point where the reaction is so bad I can’t contain it with Benadryl again, I will start the steroid pack. Right now, I am getting additional rash sites. Today its on my legs and it was not on my legs yesterday. So, I’m not 100% but I certainly know that this is gonna be okay.
Our next step is to get the medical records from the hospital and have the study sponsors review it. I would normally do an injection on Sunday, but that is currently on hold. I should know more about my fate on Monday.
So, I’m not going to hazard a guess if this is study related, if it’s related to the gluten I got Thursday, or if it is something else. I’ve got to put this out of my mind and move forward. Well, really, I’ve got to keep taking Benadryl like it was candy because my reaction is still going on, but it is MUCH, MUCH better than yesterday.
But I cannot wallow in what may happen. I did the best that I could in a scary, dangerous situation. I took all of the advice given and really, my well-being is more important than the trial.
We will see how it goes and I’ll keep you in the loop!
My husband wanted to make some smart-alec comments today, so here you go! This is Fat Celiac’s husband. I’m not one to toot my own horn…but wait yes I am. Can I just tell you all, that after this weekend I have applied more benadryl cream in more places than ever in my life? Because yes, yes I have.