Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      128,174
    • Most Online (within 30 mins)
      7,748
    stache
    Newest Member
    stache
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet. 
×
×
  • Create New...