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Celiac Test

Ashley462

By Ashley462
in Meet Up Room

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Ashley462 Rookie
Ashley462
Posted

Hi, I'm Ashley and I'm 14 years old. I have been gluten-free for about 3 weeks.

On Friday I was tested for Celiac Disease. My docotor said MANY of her patients are gluten-intolerant, but the Celiac Disease does not show up! Its very clear to me that whenever I eat gluten I am in pain, and when I dont, I feel fine.

The test said I did NOT have Celiac Disease. Thats great, but are any of you gluten-intolerant w/out Celiac?

Just Curious,

;) Ashley ;)

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gf4life Enthusiast
gf4life
Posted

Hi Ashley,

I am a mom of three kids, ages 5, 7, & 9, and we are all gluten intolerant without Celiac. Only me and my daughter have the gene for Celiac Disease, but we don't have enough damage in the intestines to be called Celiac yet. (And I do not plan on waiting to get further damaged!) Celiac is just what they call the worst form of gluten intolerance. But you still need to stay on the gluten free diet for life. Even if it isn't Celiac. It is just as important to your health. I hope you are feeling better on the diet. You are lucky that your doctor recognises gluten intolerance without Celiac. Most don't and us patients are left without follow-up care since our doctors won't believe us that gluten is our problem.

God bless,

Mariann

Ashley462 Rookie
Ashley462
Posted
  • Author

Thanks Mariann

gf4life Enthusiast
gf4life
Posted

You're welcome. :)

God bless,

Mariann

  • 3 weeks later...
celiac3270 Collaborator
celiac3270
Posted

What test did you get done? Blood test or endoscopy? There are cases where the blood test finds you not to have Celiac, but the scope does, or the other way around. It could be that he said you have an intolerance because the blood suggested, but didn't strongly indicate Celiac, or something like that. If you had both tests done, then the doctor's probably right, but keep in mind that the blood test isn't always 100% accurate, though the biopsy almost always is. However, I guess gluten-intolerant or Celiac, you'll still need to be on the gluten-free diet, so it probably doesn't even matter.

- celiac3270

13 yrs. old

13 wks. gluten-free

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    • Jy11
      Conflicting results

      By Jy11 · Posted

      Would you also agree that being so close to the IgA deficient cut off is significant? We just have been told he’s not as just over into the not deficient category…   thank you so much for all the help so far, it’s been so helpful!
    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      One study showed that up to 44% of first degree relatives also have celiac disease, so his odds of having it are quite high. Also, if he were not IgA deficient his celiac disease test scores would likely have been much higher because they were based on the IgA antibodies.
    • trents
      Conflicting results

      By trents · Posted

      Statistically, the incidence of IBS and other bowel disorders is higher in the celiac population than it is in the general population. Still, I would take one thing at a time. There is significant reason to believe your son does have celiac disease and there is no nasty prep needed for that endoscopic procedure. Assuming that he does have either celiac disease or NCGS, it is likely that a gluten-free diet corrects his symptoms and there would be no need to pursue a lower GI and it's nasty prep.  I would also add that the immune system of a child his age is not mature. It's in flux. Because of this, celiac disease testing can yield erratic results. And I would also add that some experts believe that NCGS can be a precursor to the development of celiac disease. If this is true, there would seem to be transition phases. I hope you will keep us posted.
    • Jy11
      Conflicting results

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      Thank you, I do feel the likelihood is high which is why I am reluctant to do a colonoscopy as I feel we will find the answer. Whatever the endoscopy says though and even if it were to be negative he will be going gluten free as the positive EMA has to mean something with symptoms and one parent coeliac.  But there is a niggling doubt as I try and make the right choice… I just want him to get better and be happy again! 
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      Conflicting results

      By Scott Adams · Posted

      As the article mentions: EMA-IgA (endomysial antibodies IgA) Blood Test for Celiac Disease: tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease: So the likelihood is very high he has celiac disease, and even if the biopsy results turn out negative, I would still consider a gluten-free diet.
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