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Got Labs, Should We Start Gluten Free Or Wait....


fordena

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fordena Newbie

my daughter, 8 just got her labs, anti gliadin 70.8, tiss transglut IGA antibody 79, IGG antibody 84, and EMA Anit Endomys -Postive. , we have an appt. with the pediatric Dr. May 8, we were wondering if we should start going gluten free or wait for further testing? any suggestions. and what are you rinterpretations of the labs if you can help. I have problems sleeping at night worrying and would really appreciate any advice.


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ang1e0251 Contributor

Post the full results with the parameters as different labs can have different measurements.

happygirl Collaborator

Sounds like she is positive on all tests run for Celiac. However, do not start the gluten free diet until you have discussed it with your doctor, as they may want to do further tests. Luckily, your appointment is coming up shortly. Use that time to learn a bit about Celiac.

SHEFFIE77 Newbie

MY DAUGHTER WAS DIAGNOSED 2 YRS AGO AT AGE 8. THE GASTROENTEROLOGIST COULD NOT WORK HER IN FOR 5-6 MONTHS SO, I STARTED HER ON THE GLUTEN FREE DIET.

(SINCE YOU HAVE AN APPOINTMENT SO SOON I WOULD WAIT.)

I HAD TO RESTART GLUTEN 3 WEEKS BEFORE HER BIOPSY SO IT WOULD NOT GIVE A FALSE READING.WHICH OF COURSE WAS NO FUN,SHE WAS SO USE TO NOT BEING IN PAIN AND DID NOT WANT TO EAT IT ANYMORE.

THE ONLY REASON I DID WAS BECAUSE THEY SAID HER LEVELS COULD NOT GET ANY HIGHER OR SHE WOULD BE AT RISK FOR SERIOUS COMPLICATIONS AND ALSO, HER TYPE 1 DIABETES WAS BEING AFFECTED ADVERSLEY,YET THEY COULDNT SEE HER ANY SOONER,GO FIGURE.

PLEASE LET ME KNOW IF YOU NEED ANY HELP,MY DAUGHTER HAS SO MANY DIFFERENT CHRONIC HEALTH CONDITIONS,I AM CONSTANTLY FINDING NEW INFO.

THE DRS ACTUALLY SAID THAT IF THEY WOULD HAVE FOUND THE CELIAC FIRST,THAT SHE MIGHT NOT HAVE DEVELOPED THE TYPE 1 DIABETES.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
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