Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Who Really Should Not Eat Gluten.


Lisa

Recommended Posts

Lisa Mentor

Open Original Shared Link

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).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,433
    • Most Online (within 30 mins)
      7,748

    emmelyn
    Newest Member
    emmelyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.