So, its been about a month since I was removed from the Nexvaxx trial for my safety. Just in case you didn’t know, a day after food challenge #2 I had an allergic reaction that required me to go to the ER to get it under control. I’m fine, but out of an abundance of caution I was removed from the study. Fair enough.
Just so everyone knows – the Nexvaxx trial involves a gluten challenge, then 6 weeks of twice weekly injections of increasing medication dosing, and 10 weeks of twice weekly self injections of a maintenance dose of the medication. During the maintenance dosing, there were three food challenges, where one would be gluten, one would be placebo, and one would be either gluten or placebo. Then final testing and completion of the trial. If completed there were a total of 32 injections. I got 28 of those injections before being removed.
When I started the trial, I was sick. I was sick all the time. Stomach troubles, bloating, yellow diarrhea (sorry if that’s too much, but we talk a lot about poo here), fatigue, and just looking sick all the time. I was not in a good place.
The trial helped a lot. Stomach troubles, bloating, yellow diarrhea, and fatigue were almost gone while in the trial. Before the trial, I used to consistently go to bed a 9p and sometimes as early as 8:30 and wake up tired. During the latter part of the trial, I was able to stay up past 10p, get up the next morning, and still have energy. Bowel movements were the kind that Dr. Oz describes as perfect – long, smooth, and easily passed. It was glorious.
I lost weight while eating whatever I wanted and not really exercising. Over the past 4 years, I’ve gained a significant amount of weight even while dieting and exercising – hence the name of the blog – Fat Celiac. 😉 Doctors could not explain the weight gain. So, I stopped exercising and not really caring what I ate and the weight did not creep up anymore. During the trial, weight came off without trying and not really eating a super healthy diet. (I have a theory about this one – PM me if you want to know my theory.)
But it didn’t come without some struggle. There were a few days I didn’t feel well while on the medicine. I especially remember the last injection of “updosing” where I was extremely fatigued for 3 days. After the 3 days, the fatigue lifted like a curtain rising. I had a flushing reaction after almost every injection. The flushing was not bothersome, but it was noticeable. Otherwise, the side effects were easily managed for me.
Now, almost a month after my last injection, my bowel movements are less perfect. They still aren’t as bad as they were before I did the trial, but they aren’t the Dr. Oz perfect. Fatigue is up and down – some days are good and some aren’t. I’ve been dealing with sick kids, so the stress of that could be a part of my increased fatigue. Bloating hasn’t returned.
But I am having a problem where my hands and feet will be swollen. I was swollen before the trial too. The swelling went down during the trial. I can’t really get my wedding rings on anymore due to the swelling and I’m not sure if that is related to Celiac or something else. I’m not willing to pay doctors to chase that one down just yet.
I believe I got the medicine. I’m not sure and may not know for a long time. If we look at me being on the medicine as 100%, I’m probably at 75% of where I was. I’m not as good as I was on the medicine, but I’m better than where I was before the trial.
Even with my allergic reaction and getting kicked out, I’m glad I did this trial. I’ll keep you all in the loop about how things are going over the next couple of months and if things remain the same or if they deteriorate. But I’m hoping I’m sort of at my new normal. I’m hoping this is a permanent or at least a long term improvement.