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Who Really Should Not Eat Gluten.


Lisa

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Lisa Mentor

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In part -

“Confusion about gluten sensitivity has been rampant,” says Alessio Fasano, director of the University of Maryland’s Center for Celiac Research and a co-author of the proposal, published this week in the journal BMC Medicine. “That prompted a few of us to say, ‘Let’s put some facts on the table to assess what’s known and what’s not known.’ “

The proposal—partly supported by a maker of gluten-free products, Italy’s Dr. Schär AG—also spells out diagnostic criteria to help physicians determine which, if any, disorder a patient suffers from. “It is well possible that many individuals are on a gluten-free diet for no sound medical reasons,” the authors note.

The American Gastroenterological Association says that much more needs to be known about gluten sensitivity before official guidelines can be devised—including how many people suffer from it and to what degree.

About 1% of people in the U.S. have celiac disease, a fourfold increase over the past 50 years. Some gastroenterologists say that for every patient with celiac disease, they see six to eight who have the same symptoms, but without the tell-tale antibodies or intestinal damage needed to confirm celiac.

Evidence is mounting that gluten sensitivity does exist. Dr. Fasano and colleagues last year compared blood samples and intestinal biopsies from people with suspected gluten sensitivity to those with confirmed celiac disease and healthy controls, and found distinct differences in each.

And in a study published last year, researchers in Australia showed in a double-blind, placebo-controlled trial that subjects with suspected gluten sensitivity had substantially fewer symptoms on a gluten-free diet than control subjects who unknowingly ingested gluten.

“Many physicians would roll their eyes and say, ‘God, another crazy person with food sensitivities,’ ” says Peter Green, director of the Celiac Disease Center at Columbia University and a co-author of the proposal. “It’s only now that studies are coming out showing that there’s something real about gluten sensitivity.” In fact, he notes that patients with gluten sensitivity often have even more severe symptoms than those with celiac disease, which is frequently “silent” or asymptomatic, even though antibodies to gluten are slowly damaging their intestinal tracts. That’s partly why celiac disease is underdiagnosed, he says.

Confusing the picture further are private labs that offer tests of stool or saliva that they say can definitively diagnose gluten sensitivity. Experts say that such tests haven’t been validated and shouldn’t be relied on for a diagnosis. “If anyone claims they have a test that is specifically for gluten sensitivity, there is no such thing, though I’m not ruling it out.(in the future).


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Skylark Collaborator

Good stuff, Lisa! Thanks for sharing. :)

Very interesting that Peter Green notes that gluten sensitivity can be more severe as far as symptoms than celiac.

Lisa Mentor

It's also good to know that research is ongoing for better diagnostic methods.

Yeah, I thought it was a good article.

And....

Confusing the picture further are private labs that offer tests of stool or saliva that they say can definitively diagnose gluten sensitivity. Experts say that such tests haven’t been validated and shouldn’t be relied on for a diagnosis. “If anyone claims they have a test that is specifically for gluten sensitivity, there is no such thing, though I’m not ruling it out.(in the future).

Skylark Collaborator

Me, Nora, Researchmomma and the other folks on the board who read the peer-reviewed literature and explain over and over that fecal/salivary testing is unreliable weren't enough? :blink:

Lisa Mentor

Me, Nora, Researchmomma and the other folks on the board who read the peer-reviewed literature and explain over and over that fecal/salivary testing is unreliable weren't enough? :blink:

I think people are hungry for answers, and willing to pay for that affirmation. :( But, as mentioned in the article, I wonder how many people are on the gluten free diet, who do not need to be.

mushroom Proficient

I think people are hungry for answers, and willing to pay for that affirmation. :( But, as mentioned in the article, I wonder how many people are on the gluten free diet, who do not need to be.

Not as many as doctors think :ph34r:

Skylark Collaborator

I think people are hungry for answers, and willing to pay for that affirmation. :( But, as mentioned in the article, I wonder how many people are on the gluten free diet, who do not need to be.

I find the posts from people who can eat bread in Europe and not in the US extremely interesting. There may be a lot more people reacting to GMO grains than we realize.

There is too much emphasis on "diagnosis" in this country and too little actual healing. Companies are victimizing people who have unknowingly bought into the Western medical emphasis on diagnosis. It drives me crazy and hopefully I've saved some people around here a few hundred dollars on needless testing that they can spend on their families or on something that makes them happy.


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mushroom Proficient

I find the posts from people who can eat bread in Europe and not in the US extremely interesting. There may be a lot more people reacting to GMO grains than we realize.

I find it interesting that my big three reactions are to wheat, corn and soy :unsure:

Skylark Collaborator

I find it interesting that my big three reactions are to wheat, corn and soy :unsure:

Wow, yeah. I hope you are getting organic, non-GMO rice.

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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.
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    • 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. 
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      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.
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      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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