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Still trying to process


Jules22

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Jules22 Apprentice

My type 1 diabetic daughter has an appointment with the gastro next week but something I'm wrestling with in her test results

 

her immunoglobulin A was 78- lower than range which is 80- up

her transglutinminase TTG IGA was > 100

 

Is she immunoglobulin a deficient?  If she is, doesn't the deficiency only rule out negative results and since she is very much positive then she is definitely headed toward a celiac diagnosis?

 

Thanks!- I'm having a hard time waiting for this appointment 


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tessa25 Rising Star

To my knowledge a deficiency only rules out a negative. >100 is very high to be anything other than celiac, in my opinion. She should stay on gluten until after the endoscopy, assuming the doctor orders one.

 

PinkyGurl Explorer

Yea even deficient in IGA she is very positive.  Your little is likely celiac.  Ditto to still eating gluten till the endoscopy.  It is important to have it to correlate the diagnosis!

ravenwoodglass Mentor

I agree it is pretty certain with a number that high that she is celiac. Do keep her on gluten until you see the GI. Depending on her age, and the GI's preferences, the doctor may want to do an endo.

It is hard when your child is sick to wait but thankfully next week will be here soon. I hope she heals quickly.

Jules22 Apprentice

Thanks for the responses- I'd be lying if I said I wasn't hoping for another possible explanation.

cyclinglady Grand Master

I know.  It is a lot to process, but it is doable.  You ALL will have the rest of the summer to research and learn about the gluten free diet and learning how to avoid cross contamination.  Planning and being prepared always will make it much easier.  

Your daughter will so much better in school if she is feeling well. 

  • 3 months later...
Lindsey1978 Apprentice

Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old.

I would be interested to know what your gi said and how your daughters doing now?

xx


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Victoria1234 Experienced
9 hours ago, Lindsey1978 said:

Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old.

I would be interested to know what your gi said and how your daughters doing now?

xx

You can go here, which is found by clicking on the posters name https://www.celiac.com/profile/74789-jules22/ and read her most recent posts about the biopsies.

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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.
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      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
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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