Jennifer Iscol Profile picture
President of the Celiac Community Foundation of Northern California, an independent, all-volunteer nonprofit

Oct 9, 2018, 8 tweets

1/ This is an important area of study for #celiac disease and it’s good to see a major celiac center like @CeliacatCUMC taking it on. It’s a difficult topic to study for many reasons, but scientific rigor is still the only way forward. [thread]

2/ Crowd-sourced data on #gluten cross contact in #glutenfree restaurant meals could be a useful addition to Columbia’s excellent body of work on hypervigilance and anxiety in celiac disease patients if it is presented with equal scientific care and rigor.

3/ My understanding is that this was a preliminary abstract from a conference, restricted in word count and expanded upon in oral presentation.
Unfortunately, the preliminary simplified conclusion that one third of GF meals contain gluten has predictably already swept the news

4/ It may be true that a third of #glutenfree restaurant meals contain gluten, and that would be significant (or even understate the complex of problems faced in restaurants by those with celiac disease), but to be useful the conclusion requires a strong scientific foundation.

5/ Characteristics I would expect to see in a final published study:
- Rigorous analysis of Nima validation data and how it could impact study conclusions
- Discussion of sensor limitations, including food type, user error, sample size, margin of error, rate of false positives

6/
- Discussion of biases inherent in this crowd-sourced data, including the fact that due to the significant cost for each use of the sensor it is likely to be used in environments and on foods that present the greatest risk of cross contact

7/ Finally, to avoid confusion and misunderstanding, disclosures should be consistent for the two authors who are on the Nima scientific advisory board

8/ It will be interesting to see whether an academic journal will publish a study based on crowd-sourced data from Nima’s gluten sensor and what the final paper will hold. Regardless, let's support rigorous study of this central health issue to celiac disease treatment [End]

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