As my trial nears its completion, I finish April 12th, I am starting to think about life post-Nexvax and what it means.
If I got the medicine, does that mean I can return to a gluten containing diet? Now, the trial is only supposed to be testing for cross contamination and I am maintaining my strict gluten free diet during the trial. And with just circumstantial evidence from my own experience, I seem to be getting the medicine and it seems to be working.
I’m not sure if I’m getting the medicine. I was really sick before the trial started and I’m not sick now. Even this morning after a late night and an early morning my mom even commented that I looked healthier.
As Celiac sufferers, we don’t eat gluten because it makes us sick and causes damage to our bodies. But, what if that barrier was removed? I imagine silent Celiac sufferers deal with this all the time. They have no outward signs of trouble, but internally they are doing damage. So, what is to stop them? That’s gotta be tough. The only thing stopping them from eating gluten is an iron clad will.
Also, there are new medicines in clinical trials that are looking like they may stop the effects of eating gluten, but the jury is still out on whether they protect against mucosal damage. Again, if we aren’t suffering the normal glutening symptoms, would you not eat gluten? That is a big question and I’m not sure I could. But I have symptoms, so thank goodness that is not one cross I have to bear.
But once the trial is done, who is to stop me from eating gluten? That’s right, nobody.
I’ve been thinking a lot about this. I’m thinking that I might have one treat – a doughnut, a biscuit, cake, real Chinese food, or real pizza – and then return to my gluten free diet. I think I won’t worry so much about whether the fryer was cross contaminated. I won’t worry so much about restaurant cross contamination. I will probably continue to be gluten free for the most part. By that I mean, I won’t worry too much when eating out, but at home I would maintain my gluten free diet. I’ve found a ways to make delicious easy gluten free food without too much expense or trouble.
That is what I’m thinking. I have two more food challenges, so all of these fantasies may go out the window if the food challenges don’t go the way I think they will. Also, I’m going to be cautious because we don’t know if this is a cure or if the effects of Nexvax are permanent or temporary. We don’t know if I will have to have periodic boosters to maintain the effects. We just don’t know.
For now, I’ll just fantasize about my perfect world where I got Nexvax, it works, and I’m cured of this terrible, awful, no good, very bad disease.
PS – I hope you guys will still follow me as I explore other ideas, clinical trials, and experiments.
PPS – Would you guys be interested in me trying one of the food recommendation companies based on my DNA? I was thinking of trying StrataGene.