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

Celiac Or Ncgs... An Interesting Doctor's Perspective

MsCurious

Recommended Posts

MsCurious Enthusiast
MsCurious
Posted

Still here, lurking, and playing the waiting game. :( Hopefully, will have EMA results Monday, provided the lab didn't screw things up (should have been back by now). I have no idea if test results will be positive or negative... no idea if I'm celiac or NCGS.... but regardless, after reading endless posts of frustration, and sometimes heartwrenching stories, I can empathize with all of you. I found this article very validating... no matter WHAT is going on with you, and the doctor admittedly agrees that there is a huge need for massive research, and they really know next to NOTHING about the different gluten sensitivities, and the "journey" of gluten sensitivity people have to endure to reach the "golden ring" of a celiac diagnosis. Personally, I think there are several "kinds" of gluten sensitivity that manifest different symptoms, but the result is all the same... we are sick, and gluten makes us sick. They seem to have no research to "validate" us so they make us feel crazy. Well, this article made me feel better, just by virtue of doctor admitting that they really can't diagnose something for which they have no hard scientific proof. I guess that's why when they can't diagnose celiac disease, they just say, try the gluten-free and if it works, great. I have a feeling its going to be a LONG time before there are difinitive answers for a lot of us. Thank goodness for this forum. :)

Here, Dr. Sheila Crowe, a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia, responds to readers who asked whether you can be intolerant to gluten, the way some people might be intolerant to milk, without having full-blown celiac disease.

Intolerant to Gluten Without Having Celiac Disease?

Q.What is your take on non-celiac gluten intolerance? There are some medical professionals who say that without the definitive markers of celiac disease (blunt villi, positive blood work), there is no reason to ever change to a gluten-free diet.

Could it be that the markers only become evident after a certain degree of damage and ill heath has been attained, and that celiac is really part of a spectrum of disease relating to the body

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I wonder what her take is on DH. Having DH is considered a firm diagnosis of celiac disease and is not referred to as gluten sensitivity or intolerance instead. But many times folks with DH have no intestinal symptoms or villi atrophy for years if at all. So much we still don't know.

MsCurious Enthusiast
MsCurious
Posted
  • Author

I wonder what her take is on DH. Having DH is considered a firm diagnosis of celiac disease and is not referred to as gluten sensitivity or intolerance instead. But many times folks with DH have no intestinal symptoms or villi atrophy for years if at all. So much we still don't know.

Hey Raven,

I looked it up for you... Dr. Crowe responds...

The ABCs (and TTGs) of Celiac Disease Testing

First, by definition, a diagnosis of celiac disease requires abnormal microscopic findings in small intestinal biopsy specimens. One exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which case a characteristically abnormal skin biopsy result can substitute for checking intestinal biopsies.

You make an interesting point though... in these cases... there need not be villous atropny to make a diagnosis! Rather inconsistent with the "gold standard" isn't it? :blink:

Igg postive Rookie
Igg postive
Posted

You did it again. Great Post!! Your post help me answer what I should be doing after I have my biospy. I have a positive DGP IGG test. Should I consider a gluten free diet if my biopsy comes back negative? Here is what the doctor Sheila Crowe said;

It depends on the type of patient. Some patients have symptoms of celiac disease but do not have an abnormal intestinal biopsy that is taken before starting a gluten-free diet (by definition, they are not categorized as having celiac disease). If blood tests show that such patients also have antibodies to tissue transglutaminase (TTG) or deamidated gliadin peptide (DGP), I would suggest that these individuals consider going on a truly gluten-free diet, since they are most likely on their way to celiac disease. The same advice could apply to those who have H.L.A. DQ2 or DQ8 genes without elevated antibodies, though in this case the recommendation is more ambiguous, since there are no immune abnormalities or intestinal damage.

You can see the rest of her post on (Open Original Shared Link).

I felt I was in limbo until I had the results of the test. (I know you have the same feeling). Now I feel I can proceed forward with my healing process what ever my biopsy results are. Your post really help me find the answer I needed. Big Thanks!

MsCurious Enthusiast
MsCurious
Posted
  • Author

You did it again. Great Post!! Your post help me answer what I should be doing after I have my biospy. I have a positive DGP IGG test.

I felt I was in limbo until I had the results of the test. (I know you have the same feeling). Now I feel I can proceed forward with my healing process what ever my biopsy results are. Your post really help me find the answer I needed. Big Thanks!

Igg, YOU JUST MADE MY DAY! :D It's so nice to know I could have helped even one person in some small way! This is a long journey... feel like I've been in the "pre-diagnosis forum" forEVER, and I'm sure you do, too! LOL :P But, I'm learning a lot and it feels good to know I can make even a teensy difference in relieving someone's frustration level. ;) Thanks for letting me know it helped! :)

GFinDC Veteran
GFinDC
Posted

Scott posted this article link not long ago about NCGI research. you might find it interesting.

Study Shows Gluten Intolerance Without Celiac Disease - Celiac.com

ravenwoodglass Mentor
ravenwoodglass
Posted

Hey Raven,

I looked it up for you... Dr. Crowe responds...

The ABCs (and TTGs) of Celiac Disease Testing

First, by definition, a diagnosis of celiac disease requires abnormal microscopic findings in small intestinal biopsy specimens. One exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which case a characteristically abnormal skin biopsy result can substitute for checking intestinal biopsies.

You make an interesting point though... in these cases... there need not be villous atropny to make a diagnosis! Rather inconsistent with the "gold standard" isn't it? :blink:

I am glad she does address this and yea I agree it is rather inconsistent with the 'gold standard' and is why I personally consider 'gluten intolerance' and celiac to be basically two names for the same thing but perhaps with different organ impact.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.