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Savvy Celiac: Why so much anger with the Gluten-free movement? - MinnPost.com (blog)


Scott Adams

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MinnPost.com (blog)

Want to get the celiac or gluten free community riled up? I think we now know how. A vile Facebook entry earlier this month by self-proclaimed “chef” Damian Cardone in Colorado did just that when he said “gluten free is bulls*#t” and he would serve ...

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Serafina57 Newbie

I am disabled because of celiac disease. My nervous system is attached and I can't walk or think. Gluten Ataxia. It takes about 14-18 hours after eating gluten to have symptoms for me and I'll be sick for weeks. So...this "chef" seems to support what I suspect many chefs/cooks believe. I always ask to speak to the manager when I dine out. Always. I stopped eating out two months ago, because I was constantly getting glutened. I feel much better. By the way, I live in Colorado.

Takala Enthusiast

There are lots of "foodie" trolls all over the internet. Just like there are trolls for all sorts of different subjects. Why the "anger?" It's very simple. I had several identities trolling me on the specific topic of auto immunity on another board, and there was a specific, deliberate effort to discredit the information I presented, which was not done in a way that would be considered polite. It was ghastly. ( I was not getting paid, but just writing in an informational, conversational way as an educational sort of thing to advocate for better general knowledge. But I also cited scientific papers, which must have really messed up their narrative. ) I dug around and found out who and what the likely reason they were doing this. I was not pleased when I found out. My only cold comfort was that since then, they've gone to extraordinary lengths to hide their online identities. One of them since then, I've seen communicating publicly in a friendly, advisory way with a writer who's done what could only be described as a hit piece on the entire topic of gluten intolerance/celiac and other related conditions.

This is pretty weird, actually. 'Cause now they've gotten even more people annoyed with them in the auto immune disease community.

They aren't like the chef guy, whom I think just has a bit of a screw loose, and should perhaps seek some counseling on why he's claiming he likes to hurt people. Instead it's deliberate as part of a business strategy, as far as I can figure out.

Imagine these types of encounters happening, over and over again. They like to try to make people angry because in their mock calm and "reasoning" it gives them a feeling of control. Here are people who tout their online identities as being professional, cool, and very erudite, and they have this secret side of themselves that is not.

The classic response is supposed to be to ignore trolls and take the higher road. But if we get a few hundred people cleverly manipulating the "common knowledge" data base of public opinion on the internet, with out a passionate response to correct the sabotage, we could end up with the general public thinking that it's an imaginary disease, or a psychiatric condition.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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