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. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      316

      Terrible Neurological Symptoms

    2. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      316

      Terrible Neurological Symptoms

    3. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    4. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      316

      Terrible Neurological Symptoms

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

    • Total Members
      133,588
    • Most Online (within 30 mins)
      7,748

    FSteele
    Newest Member
    FSteele
    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

    • knitty kitty
      @HectorConvector, My blood glucose level would spike after I ate.  It wouldn't return to "normal" fasting blood glucose level for longer and longer.  Blood glucose level should return to normal an hour after eating.  Mine would take two hours, then three hours, then longer.  So over night fasting blood tests wouldn't necessarily be very high until they got really bad.  But the peripheral neuropathy would feel the worst while my glucose was too high.  My blood glucose meter confirmed this.   On top of all that, my Celiac disease was still undiagnosed at the time, and I was suffering from malabsorption and nutritional deficiencies.  The deficiencies in B vitamins affected not just insulin production in the pancreas, but also the nerves in my extremities.  Nerves need B vitamins to maintain the myelin sheath protecting the nerves (like the plastic coating on electrical wires) when they fire.  When the myelin sheath is not maintained, that "pins and needles" feeling starts and increases as more of the sheath is damaged.  My parathesia progressed until the "pins and needles" went from my toes all the way up to my thighs.   Without sufficient vitamins, I started slowly losing weight.  Our bodies will start using not only stored fat, but also tear down our own muscles to provide fuel for the body to stay functional.   I hope you don't have pre-diabetes or diabetes.  Most diabetics have a thiamine deficiency.   How much thiamine are you taking?  What form of Thiamine are you taking?  
    • HectorConvector
      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 
    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
×
×
  • 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.