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

Onset Of Celiac Disease


gfb1

Recommended Posts

gfb1 Rookie

i've noticed an increase in the frequency of postings regarding understanding of partially-positive or negative test results, in the face of celiac-like symptoms. conflicting test results also seem to be common.

celiac disease can be considered to be a 'threshold' disease. that is, blood test results and small bowel injury do not occur in a persons life until AFTER some 'threshold' or minimum level of gluten exposure. this threshold level appears to be extremely variable, taking into account both the degree to which one's gastrointestinal tract can metabollize gluten, one's level of inherent immune response to gliadin/gluten as it contacts the intestinal mucosa (probably the role of HLA alleles), the extent of one's immune response AFTER small bowel injury (i.e., following the entry of gliadin into the bloodstream) and, unsurprisingly, the amount of gluten one eats!!

a personal example;

my wife came from a 'meat and potatoes' family -- eating bread approx once per week-- with no health issues.

she had the misfortune of marrying some good looking italian 'guy', who (not to be stereotypical, but.... ) insisited on pasta twice a week and bread at every meal. worse, this poor fellow was a ny/nj-italian-american -- who introduced her to the wide, wonderful (but gliadically evil) world of bagels -- probably 5 times per week (the other 2 breakfasts were usually red bean cakes from chinatown...).

within 2 years, age 23, her health issues started and it took nearly 10 years to be diagnosed.

not a strange story, in and of itself... but, her dad -- who continued on the same meat/potatoes diet -- was only diagnosed with celiac disease 5 yrs ago at the unripe, young age of 77.

so, as equivocal test results start rolling in; remember that in order to consistently test 'postive' across all blood/biopsy tests; you really need to be eating gluten and have 'mature' celiac disease. perhaps contrary to expectations, some of the gastrointestinal outcomes of celiac disease, eg. bloating, gas, diarrhea, occur BEFORE all the clinical testing is postive.

this is probably why the 'old timers' in the group always tell the newcomers to try a gluten free diet for a few weeks to see if you feel better.

the difficulty with this approach involves the personal decision as to whether to re-introduce gluten into the diet in order to test positive...


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



Celiac.com Sponsor (A8-M):



nasalady Contributor
i've noticed an increase in the frequency of postings regarding understanding of partially-positive or negative test results, in the face of celiac-like symptoms. conflicting test results also seem to be common.

celiac disease can be considered to be a 'threshold' disease. that is, blood test results and small bowel injury do not occur in a persons life until AFTER some 'threshold' or minimum level of gluten exposure. this threshold level appears to be extremely variable, taking into account both the degree to which one's gastrointestinal tract can metabollize gluten, one's level of inherent immune response to gliadin/gluten as it contacts the intestinal mucosa (probably the role of HLA alleles), the extent of one's immune response AFTER small bowel injury (i.e., following the entry of gliadin into the bloodstream) and, unsurprisingly, the amount of gluten one eats!!

a personal example;

my wife came from a 'meat and potatoes' family -- eating bread approx once per week-- with no health issues.

she had the misfortune of marrying some good looking italian 'guy', who (not to be stereotypical, but.... ) insisited on pasta twice a week and bread at every meal. worse, this poor fellow was a ny/nj-italian-american -- who introduced her to the wide, wonderful (but gliadically evil) world of bagels -- probably 5 times per week (the other 2 breakfasts were usually red bean cakes from chinatown...).

within 2 years, age 23, her health issues started and it took nearly 10 years to be diagnosed.

not a strange story, in and of itself... but, her dad -- who continued on the same meat/potatoes diet -- was only diagnosed with celiac disease 5 yrs ago at the unripe, young age of 77.

so, as equivocal test results start rolling in; remember that in order to consistently test 'postive' across all blood/biopsy tests; you really need to be eating gluten and have 'mature' celiac disease. perhaps contrary to expectations, some of the gastrointestinal outcomes of celiac disease, eg. bloating, gas, diarrhea, occur BEFORE all the clinical testing is postive.

Very helpful post...thanks!

I should add that many of us who have battled with weight problems have tried every diet out there, and not surprisingly, discovered that we felt BEST on a low-carbohydrate diet....that it made our "IBS" subside or even go away entirely!

So we have unconsciously been on a "gluten-light" diet for years or even decades to control gastric discomfort as well as to lose weight. This definitely complicates things when we go see the doctor wanting a firm diagnosis! :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,687
    • Most Online (within 30 mins)
      7,748

    tafora242
    Newest Member
    tafora242
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ShariW
      I recently traveled to Spain and Portugal. I was with a tour group, they knew I needed to be gluten-free and made sure the kitchens preparing the group meals were aware. But just in case, I took Gliadin-X with me and took it for every evening meal - and most other meals. The one time I got glutened was from lunch early in the trip - had to be from cross-contamination. I had not taken Gliadin-X before that meal, which made for a pretty miserable day. Learned my lesson... 😞 
    • Hummer01
      Hi trents, thanks for the response.  The 2nd opinion doctor said that if my CRP is still elevated at that time, he would advise me to look at Crohns/UC or another autoimmune issue. The colonoscopy I had this year seemed to rule those 2 out for now so he still believed celiac may explain it. No previous doctors have suggested any explanation for it even after calling to tell me it was a concerning result.  I guess it feels tough knowing I have positive blood testing, permissive genetics, and visible duodenum changes... and somehow it's NCGS instead of celiac. I'm still surprised the biopsies came back negative when the doctor was so sure they would be positive.
    • trents
      "He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body? "She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong! This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test. The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition. The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article: Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.
    • Hummer01
      Hi all, just wanted to post an update.  I have been gluten free for about 1.5 months now and seeing improvement already in the bathroom.  Recently I had a visit with another GI doctor for a 2nd opinion. He said that while my blood tests and scope are not a "slam dunk" for celiac, he believes it's more likely than not that I have it. His advice was to stay with a celiac-level gluten free diet (no CC) for 6-12 months then retest to make sure TTG-IGA is still negative. He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac.  Today I had a follow up with the original GI that performed the scope. She is confident it is NCGS and says I can still have gluten sometimes. When I asked about the visible duodenum damage, she said it is just "irritation" from gluten because the biopsies were negative. She also said that my positive EMA isn't valuable because it has "a high false positive rate."  I guess I'm having trouble reconciling the totally different advice from these 2 GI's. I want to believe the new doctor more at this point because what he said just makes more sense to me, and he gave an actionable timeline for possible next steps. Feeling lost and disappointed at this point and wanted to write it down here in case anyone has input. Thank you.   
    • knitty kitty
      @junell, Can you get a DNA test to look for genes for Celiac Disease?   Have you had your thyroid checked? Have you been checked for nutritional deficiencies?  Being on a restricted diet for so long and especially now since you are having symptoms can cause malabsorption resulting in vitamin deficiencies.   Talk to your doctor and dietician about supplementing with essential vitamins and minerals.
×
×
  • Create New...