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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Celiac Disease and Covid-19: Thread with selected highlights from the webinar today co-hosted by @NationalCeliac and the @harvardmed Celiac Research Program, moderated by Dr. Alan Leichtner @BostonChildrens, featuring Dr. Alessio Fasano @CeliacResearch and Dr. Jonathan Li @DrJLi
Physician-scientist Dr. Jonathan Li @BrighamWomens, director of the Harvard University Virology Specialty Laboratory, opened with an excellent overview of Covid-19 that I highly recommend watching, but for length I will focus on the celiac-specific content in this thread
Dr. Alessio Fasano said that because Covid-19 is brand new, "we are building the airplane while we are flying" and it's too early to answer many of the questions that come up about how #celiac disease as an autoimmune condition interacts with #Covid19
Camp Celiac swag is our #GivingTuesdayNow fundraiser! We have cool gear for everyone. Support kids with #celiacdisease and other #gluten-related disorders during the pandemic by helping us fund virtual Camp Celiac! Here's one of two logo styles customink.com/fundraising/ca…
We can't host in-person Camp Celiac this year but our director & counselors are planning Virtual Camp Celiac 2020 on our social media platforms & Zoom. We have substantial costs in providing virtual camp & other free community services during the pandemic. Thx for your support!
@GeneralMills@US_FDA Thanks to @GFWatchdog for alerting the community to this issue and taking the lead. @GeneralMills needs to provide a statement. We would consider a boycott if this cannot be resolved through other means. It's an unsafe approach to labeling #publichealth#celiac
@GeneralMills@US_FDA@GFWatchdog While @GeneralMills is planning to skirt and possibly violate the @US_FDA#glutenfree labeling rule with "gluten friendly" products using a "GF" symbol, note that the unwelcome term has only been used in restaurants, not on packaged products made in controlled environments
Our foundation needs your input. I am writing about Microdrop's "imaware" home #celiac test and #rheumatoid#arthritis tests. Reply, DM or send an email to me at jiscol@celiaccommunity with your experience. Your name will not be published without your permission. RTs helpful.
We would like to hear about your Microdrop @imaware_health#celiac or #rheumatoid#arthritis test experience, positive or negative, whether adults or children were tested, whether you acted on the results, whether you looked into it and haven't purchased one, etc.
Let's recall what @US_FDA has stated about food labeled #glutenfree in restaurants:
"FDA recognizes that compliance with the gluten-free regulation in processed foods and food served in restaurants is important for the health of people with celiac disease." 1/8
"FDA’s regulation established a federal definition of the term “gluten-free” for food manufacturers that voluntarily label FDA-regulated foods as “gluten-free.” The definition was intended to provide a reliable way for people with celiac disease to avoid gluten, and..." 2/8
It's very good to see the first validation study @imaware_health. Congratulations to your team! This is important progress. I look forward to the followup studies described in the validation. In the meantime, I have some questions, which are numbered Q1-3 in this thread. 1/9
I am studying @MicrodropHealth / @imaware_health from multiple angles. I don't see investors or medical/scientific employees (rather than paid advisors) on the website. So I have a few Qs that arose as I started my review, and that I hope you are in a position to answer. 2/9