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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
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      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
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      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
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