Help vs. Cure

Larazotide acetate or INN-202 is now in Phase 3 trials. I’ve ranted and raved about this trial and this medicine. I’ve talked about how this trial only evaluates the symptoms someone experiences or soft end points rather than cold, hard scientific facts, like TTG IGA or biopsy results.

But the question is – does it matter?

Yes, symptoms matter. Symptoms are what keep most of us away from gluten, except the hardy silent celiac bunch they are a special breed. But with the recent studies that demonstrate that celiac damage is unrelated to symptoms other than persistent diarrhea, are they good enough to have this drug based solely on an improvement in symptoms?

There are pros and cons to this approach. Here’s my take.

I would love a pill that would allow me to go on vacation and not experience side effects of gluten exposure. Because most restaurant meals have cross contamination issues, we always get glutened on vacation – if you don’t, you need to write a book! Imagine a world, where you are getting glutened from cross contamination but have no symptoms. Sounds like a great world, but there is a down side. It feels like a devil’s bargain.

Also, it is important know that the damage is still being done to your intestines, so this isn’t a free pass to consume all the gluten you can stand. One might be sicker at home when returning to your gluten free diet because damage has been done to your intestines. All the healing you have done over time is potentially wiped out because of the cross contamination damage done.

Here’s the really slippery slope, what if the drug is so good that you return to a gluten containing diet but experience no symptoms? Then the damage is really being done. I imagine someone taking this to the extreme. Then ending up with celiac cancer because they didn’t follow a gluten free diet because they were symptom free.

Again, on the other hand, it would be nice to go to a friend’s house or cookout and not have to worry about their grill having cooked buns on it even and cross contaminating my burger. It would be nice not to have to ask 100 million questions each time we go a restaurant about their cross contamination procedures and then still getting sick.

As you can see, I’m struggling with this answer. Especially after going on vacation and for the most part being okay, but struggling through a serious glutening episode. Then having to continue my vacation when all I really wanted to do was spend the next day in bed. I’m even still struggling with the remnants of the glutening 4 days later.

This is a difficult decision and one that has to be thought through for each person. Also, in my mind, this is only the first step to a cure. If they can figure out a way to stop symptoms, then surely they can figure out a way to stop the disease.

Anyway, this has been rattling around in my brain for a while. I’m not sure what the correct answer is for me. I think when and/or if this comes out, I will just be grateful I can make a choice.

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