This story cedes control to an enthusiastic author of the study being covered, allowing him to speculate optimistically about the benefits of an experimental treatment that is very early in its development. The restraining hand of an outside expert isn’t felt until the very end of the piece, by which time the story has already pumped up the potential benefits far beyond what is warranted.
For patients with celiac disease, strict adherence to a gluten-free diet is currently the only effective treatment option. But such diets are very hard to follow and a lot of nutritious foods are restricted. While it would be ideal to have a pill that would allow these individuals to eat gluten without restriction, it would also be useful to have a tool to mitigate the danger posed by unintentional exposure to small amounts of gluten. One of the biggest problems these individuals face is accidental exposure to gluten in foods that are supposed to be gluten free (e.g. in restaurants, bakeries, etc.).
We’ll rate this not applicable since the concept is obviously still in the very early stages of development.
The story is far more generous in discussing potential benefits than these results warrant. Quoting a study author, the story suggests that patients with mild cases of celiac disease could “pop one [pill] before each meal and eat anything they want.” Really? Based on a single test tube experiment? Even if the enzyme was capable of dismantling 95% of the harmful protein, as the story suggests, we’re never told how quickly the protein was neutralized, or how much enzyme was needed to break down how much gluten, or what amount of actual food the gluten in the test corresponded to. In other words, we’re given no reason to believe that these data have any real-world application to celiac patients at this time, and so such speculation would only be acceptable if accompanied by strongly worded caveats. Unfortunately, the only caveats come at the very end of the story, long after it has been suggested that the pill might allow celiac patients to “eat freely.”
The story addresses harm, but in an unsatisfactory way, when it quotes a study author who says, “It shouldn’t be toxic; it’s just a protein you’re eating.” In fact, proteins can be plenty toxic, and until this new compound is tested in humans, we can’t be certain of what its effects might be.
And even if it’s not directly toxic, such a treatment might give patients permission to indulge and overdo it with respect to gluten, a compensating behavior that might cancel out any benefit from neutralizing small amounts of dietary gluten.
A close call here, as the the story did identify some important caveats in comments from an expert source — especially that we don’t know if the enzyme neutralized enough of the protein to provide protection for celiac patients. But it should have done a better job of putting these concerns higher up in the story, and it should have noted some other issues — particularly the fact that the enzyme was only tested on one type of gluten protein (alpha-gliadin), whereas celiac patients also react to several other gluten proteins (e.g. glutenins) that are presumably not targeted by this enzyme. In addition, the story should have given us some sense as to what evidence would be required to demonstrate the treatment’s effectiveness in real patients.
Given gluten’s growing reputation for being toxic, even among those who have nothing to fear from it, we think the story could have done a better job differentiating celiac disease — an autoimmune intolerance to gluten that can have serious health consequences, including higher risk of lymphoma — from the garden variety indigestion that some people attribute to eating wheat products. While some patients with gluten hypersensitivity and celiac disease can have extreme reactions (and this can be part of the spectrum of this condition), this is by far not the norm for the condition.
We’ll give the story the benefit of the doubt on this criterion.
The expert source quoted at the end of the article provides some very important context. This is the major strength of the story. However, the story should have mentioned that Dr. Murray is on the scientific advisory board of a company testing a competing treatment for celiac disease. His comments should be viewed with that perspective.
A gluten-free diet is the only effective alternative for celiac disease. The story makes this clear.
The story makes it clear that this is an experimental treatment and not available to the public, although we’re a little uncomfortable with the prediction that a pill could be available “in a few years.” That’s true, but it’s also possible that such a pill might never be available. Why not mention that possibility as well?
The story makes it sound like this is the only pill-type treatment that is currently being developed for celiac disease. In fact, at least one other pill is already in phase 2 human testing.
There’s enough original reporting that we can be sure this isn’t based on a press release.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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