What does a cure look like?

Lots of drugs for celiac disease are going into clincial trials. As I look at the design of these studies and think about what it would take for me to either participate in the trial or evaluate taking the drug after it was approved.

So, there is this idea of a band-aid, an almost cure, and a cure. A band aid looks like a drug that prevents symptoms of gluten exposure but doesn’t necessarily stop damage to the small intestine. An almost cure looks like continuing a gluten free diet but preventing damage to the small intestine from accidental gluten exposure. A cure looks like returning to a gluten containing diet with no damage to the small intestine.

For me, a band-aid type medicine looks like something to be taken on a temporary basis, kind of like when going on vacation or maybe eating out at a friend’s house. It would be something that would be used infrequently because damage would still be done to my system and I’m trying really, really hard not to allow more damage to my system.

An almost cure is exactly that, an almost cure. It means that I still have to eat a gluten free diet, but my system is protected from accidental cross contamination. This sounds great! The issue becomes complicated because what is the threshold where the cross contamination damage starts to happen. It is tricky there. But it allows me to be less concerned.

Then the cure is a cure. It means my life can go back to what is was and I just have to take a pill or give myself a shot and all will be well. This of course is the ultimate goal and would be life changing.

Of course, none of the three options have any side effects, too, because that is a whole other conversation. Because what level of side effects would be acceptable and would the side effects be so bad I might as well stick to my gluten free diet.

I feel like the gluten free diet, while woefully inadequate, is an acceptable solution. It isn’t pretty and it is really hard, but we can do it. I feel like drug companies have to prove to us that their drug is a better option than a gluten free diet.

For me, proof is results from the clinical trials. For the band-aid, I want to see that there was a significant reduction in symptoms even when exposed to gluten. For the almost cure, I want to see that there is no damage to the small intestine via biopsy during small gluten exposure. For the cure, I want to see cytokine profiles, blood tests, and small intestinal biopsies go unchanged while consuming copious amounts of gluten.

As a side note, all of this proof requires exposure to gluten during the clinical trials. The courageous people in clinical trials have to put their bodies on the line to help decide if these drugs work or not to help the entire celiac community. That is the trick.

How much gluten needs to be consumed? How many gluten challenges would it take to make someone believe a drug worked? Are the requirements for gluten challenges different for each of the three types of drugs – band aids, almost cures, or cures?

Anyway, the idea that there may be something coming along in the drug pipeline that may help us. I’m not sure which we will get first, but I’ll be grateful for any help to deal with this disease.

These are the things I’ve been thinking about recently and want to hear what you all think.

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