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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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