Discover and read the best of Twitter Threads about #celiac

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

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CALL TO ACTION: @US_FDA is temporarily relaxing food labeling to help minimize the impact of COVID-19 disruptions to the supply chain. It weakens #glutenfree labeling & may create a #celiac health risk.
Read our group letter & submit your comment to FDA.
celiaccommunity.org/2020/letter-to…

Tremendous thanks to @GFWatchdog for leading the collaborative letter writing, two attorneys who volunteered their time, & @NationalCeliac @TweetSSCD, @GlutenDotOrg @BeyondCeliac & others. Please add your own voice by submitting a comment to FDA. Link and content in our blog.

Special shoutout to the two attorneys, Adam Rapp of Glynn & Finley in Walnut Creek, CA, and Kaki Schmidt, in Washington, D.C., who helped draft the letter and work with @GFWatchdog pro bono. It makes a huge difference when community members with specific skills jump in.

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Homa Sayyar Woodrum

@woodrumlaw

A thread of some of my thoughts reading through the guidance temporarily relaxing food labeling regulations...

You can read the whole thing for yourself here:

fda.gov/regulatory-inf…

Not a fan of the lack of options for public comment in advance. The guidance states: "[...] this guidance is being implemented without prior public comment because FDA has determined that prior public participation for this guidance is not feasible or appropriate [...]"

The guidance goes on to indicate it is just that, guidance, but it appears it could have very real effects on consumers if manufacturers take advantage of the options set forth in the guidance to make changes to formulations without changing packaging to reflect that.

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Priyanka V. Chugh, MD

@AntiWheatGirl

I had a pretty scary experience last night as a patient that I wanted to share. This story may hit home for #allergy #foodallergy #celiac friends and I hope will be enlightening for my #medtwitter #medstudenttwitter friends! 1/

So my family ordered takeout from a restaurant that I’ve eaten safely at dozens of times in the past. Unfortunately 2 bites into my food, I started to feel nauseous and my lips start tingling.

For anyone with food allergies, you know that’s the start of something bad. 2/

That uncomfortable feeling progressed into full blown anaphylaxis very quickly.

Ive made it 28 yrs, never had to use my EpiPen before & I made the huge mistake of not having it with me. I am INCREDIBLY thankful that my partner keeps one for me at all times just in case. 3/

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Proposed labeling by @GeneralMills of using "GF" for a product that is not also labeled "gluten-free" violates the spirit if not the letter of the @US_FDA #glutenfree labeling rule & is an ill-considered affront to #celiac advocacy & #glutenfree consumers generalmillscf.com/products/categ…

@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.

If you used an @imaware_health home #celiac or #rheumatoid #arthritis test in LATE APRIL, MAY or JUNE, we have an extra interest in hearing from you.

If you are an influencer paid to promote the company or received a free test, please disclose.

Qs are welcome - thanks!

Congratulations to Dr. Alessio Fasano for receiving Italy's highest honor to a research scientist! Brilliant scientist & clinician, has always taken time with patient groups & journalists. Most U.S. #celiac experts are immigrants, now teaching the next generation. @CeliacResearch

https://twitter.com/MassGeneralMDs/status/1143540623217254401

2/3 Leading U.S. #celiac experts and where they grew up and/or were educated (partial list, any errors or omissions are mine):
Sheila Crowe (Canada)
Alessio Fasano (Italy)
Nielsen Fernandez-Becker (Dominican Republic)
Peter Green (Australia)
Stefano Guandalini (Italy)...

3/3 (continued)
Bana Jabri (France)
Ciarán Kelly (Ireland)
Chaitan Khosla (India)
Francisco Leon (Spain)
Joseph Murray (Ireland)
Ritu Verma (India)

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Great teamwork by media, physician, patient, advocate, lab, to demonstrate for public understanding that restaurant #glutenfree pizza may not be safe for those with #celiac. Need restaurant education & @US_FDA action @GMA @BenjaminLebwohl @GFWatchdog @k_liebowitz @Biadiagnostics

https://twitter.com/GMA/status/1145669427314085889

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

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Dr. Greene-Liebowitz

@k_liebowitz

On a serious note:
Tuesday is my father's 2nd yahrzeit
Sunday 4/21 was the 2y anniversary of his death.

In reflecting back, I have some thoughts for #medtwitter, #Jews and the general public...
1/

#death #dying #grief #PalliativeCare #medicine

1. Condolence notes just need to say, "I am thinking of you" or "I was sorry to hear your news" or "I am sorry for your loss."

Don't overthink it, and don't offer false platitudes. Send your note or make your call, and the person who is #mourning knows you care.
2/

2. Show up.
For #shiva, for #kaddish. The first week, there's a lot of people around in a #Jewish house of mourning. Then everyone goes home, and we are left alone.
Offer to go to lunch. Bring dinner. Take a walk.
Join us in shul. Kaddish that first time in services was hard.
3/

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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

https://twitter.com/imaware_health/status/1110183751370371072

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

According to a PR release by the manufacturer of your kits, SQI Diagnostics @Best_Multiplex, the goal within a year is to begin testing 50k people annually for #celiac disease and 25k more for #rheumatoidarthritis finance.yahoo.com/news/sqi-diagn… 3/9

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Meredith Hutchison Hartley

1/ A new study by @BrighamGI & @MIT documents unlabeled gluten, lactose and other inactive ingredients in medication. "In a recent survey, 18% of manufacturers said their medications contain gluten." #celiac #medication #gluten wapo.st/2Jat3kk

2/ The study was led by Dr. Giovanni Traverso @BrighamGI, whose #celiac patient felt sicker after starting a new #drug, due to unlabeled #gluten. The national celiac community has lobbied for over a decade for mandatory labeling of gluten in drugs: celiaccommunity.org/2016/gluten-in…

3/ We hope @US_FDA takes notice and revisits its position that #gluten in drugs is rare and in too small amounts to require labeling. @FDAPatientinfo @FDA_Drug_Info This is our position on FDA's stalled and inadequate 2017 gluten in drugs proposal: celiaccommunity.org/2018/fda-comme…

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@thequalitygirl

No. 1/130 people getting properly diagnosed w #celiacdisease or allergies “popularized” safe gluten free food. We fought for it ourselves.
@GwynethPaltrow popularized pseudoscience & not taking people seriously whose GF diets are medically-necessary.
m.eonline.com/news/1021344/g…

We fought for our children and ourselves. We called companies. We voted with our dollars. We’ve been vocal online for decades. It is the height of arrogance for Gwyneth to claim a few articles on GOOP and a cookbook 4 years ago deserve any credit. #celiac

Because it’s not a “lifestyle craze” for hundreds of thousands. It’s not a wellness fad. It’s life or death. And amazing advocates & activists like @GFWatchdog fight every day to make sure gluten-free food is consistently safe & companies are accountable.

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1/ In a significant development for students with celiac disease and food allergies, @TheJusticeDept today announced a settlement with @RiderUniversity that ensures accommodation under the Americans with Disabilities Act justice.gov/usao-nj/pr/us-…

2/ Following a student complaint, a DOJ investigation found the university violated the ADA by failing to make reasonable modifications for students with food allergy-related disabilities. DOJ reached a similar settlement in 2012 with Lesley University celiaccommunity.org/2013/lesley-un…

3/ We applaud @TheJusticeDept for upholding the civil rights of students with celiac disease and food allergies under the ADA, send appreciation to the anonymous student who filed the original complaint, and support @RiderUniversity in its new efforts

Exciting new online tool to share far and wide for diagnosing #celiac in kids! The "NASPGHAN Clinical Guide for Pediatric Celiac Disease" is by @NASPGHAN doctors in partnership with @CeliacDotOrg. Check it out! It's interesting to follow the algorithm clinical.celiac.org 1/4

Kudos and appreciation for this important new #celiac diagnostic tool to Norelle Reilly @CeliacatCUMC, KT Park @KTPARKMD @StanfordChild, Ivor Hill @nationwidekids, Stefano Guandalini @CureCeliac, Edwin Liu @ChildrensColo, Ritu Verma @ChildrensPhila...2/4

...Joseph Levy @nyulangone, Alessio Fasano @CeliacResearch, Edward Hoffenberg @ChildrensColo, Marilyn Geller @CeliacDotOrg and many other contributors, including Rajitha Venkatesh @dr_rdvenkatesh @Duke_Childrens. Free access on tablet, smartphone or desktop 3/4